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DR SARAH MYHILL, UPPER WESTON, LLANGUNLLO, KNIGHTON, POWYS,
LD7 ISL TEL: 01547 550331 Fax 01547 550339 August 2000: 13th Edition -reprint
DIAGNOSING AND TREATING CHRONIC FATIGUE SYNDROME
4. Introduction
4. Diagnosis of CFS
6. Overview of available treatments
6. what must be done in every case all of the time
6. what must be tried in every case and continued some of the time
9. which are not worth trying (in my opinion)
10. weird and wonderfuls – what have worked for some people
and are safe to try
11. how long before I recover?
12. dealing with doctors
13. ideas for the future
15. Management of CFS – the details
15. Rest
16. Managing energy levels – systems analysis approach
18. 10 commandments for reducing stress
19. Sleep
19. Getting a good night’s sleep
21. CFS and sleep disorder
24. Nutrition
24. The healthy diet
26. Nutritional supplements
28. Trace elements in food
29. Nutritional supplements in acute infections
32. Treating magnesium deficiency
34. Magnesium by injection
35. Magnesium per rectum
36. Magnesium by mouth.
36. Painkillers.
37. Congeners.
38. Antidepressants in CFS
38. B12 injections
39. Food allergies
40. The elemental diet
42. Gut dysbiosis:
43. tests of gut fermentation
44. management of a positive gut fermentation test
45. the anti-candida diet
45. nystatin
46. other treatments for gut dysbiosis
47. The Specific Carbohydrate Diet
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48. Chronic undiagnosed infections
50. Hyperventilation and Buteyko’s treatment
52. Hormonal disturbances in CFS
55. Thyroid supplementation
55. DHEA and cortisol
60. Natural progesterone
62. Enzyme potentiated desensitisation (EPD)
67. instructions to follow for every dose of EPD
70. Healing with Seka Nikolic
72. Heparin injections
73. Toxic Causes of CFS: organophosphate poisoning, silicone poisoning, carbon monoxide
poisoning and others: Recognising the problem.
Chronic organophosphate poisoning
74. Treatment
75. Multiple chemical sensitivity
76. COPS – a psychiatrists view
77. Silicone implants
79. Treatment
81. Carbon monoxide poisoning
82. MISCELLANEOUS INFORMATION
82. CFS check list
83. CFS Ability scale
84. Physical or psychological?
85. SPET scanning for CFS
86. The plastic rose syndrome
89. Detoxification
92. The Pill and HRT
95. Homo sapiens chemicalis
95. Arthritis
96. Osteoporosis
98. Dental problems and CFS
100. Mercury poisoning
101. Getting Benefits
102. Further information
Handouts pinched from other people!
Papers about B12 papers
Chester MESH – Dr Skinner’s paper on thyroid function
Action for ME diagnostic guidelines
ME Action Campaign Information for Doctors
Carbon monoxide poisoning information
Moving house
Ampligen trial information
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This book has evolved over the past 19 years from my experience in treating patients with CFS in
NHS and private practice. Many of the ideas have been given to me by patients to whom I am
eternally grateful! All have been tried and tested on hundreds of patients.
Anybody is welcome to use any of this information in any way they see fit. You are welcome to
copy bits and send them on to anybody else. But please do not (as has happened to me in the
past) pretend that somebody else has written it!
Who Am I?
I have worked in NHS and private practice over the past 18 years since qualifying from the
Middlesex Hospital Medical School in 1981. I am the Hon Secretary of the British Society for
Allergy Environmental and Nutritional Medicine, a medical society interested in looking at
causes of disease and treating through diet, vitamins and minerals and through avoiding toxic
stress. I lecture regularly on organophosphate poisoning, the problems of silicone, CFS and so
on. I am one of the medical advisers for Action For ME.
I have two girls Ruth and Claire now 17 and 16. My hobbies are anything to do with horses! In
the winter I hunt, in the summer I go BHTA eventing – dressage, show jumping and cross
country.
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Introduction
My ideas and information about CFS are evolving all the time. This is an attempt to keep all my
patients up to date and make sure I am not overlooking details. These ideas are my own, but
reflect the principles followed by most other practitioners who are also treating this illness. I
welcome any suggestions for changes or improvements to this document. Anybody who would
like a copy of this can have one by sending me a cheque for £9.00, plus £1.00 p and p, or by
accessing this on my web site (which is about to be set up!). This book has evolved over several
years and additions are therefore dated. CAPITAL LETTERS indicate there is an information
sheet somewhere in the book.
Many thanks to my secretaries, Hania Baker and Caroline Breeze who have revised this edition!
They work regularly for me Monday to Friday and the telephone is answered between 10.00am
and 12.00 noon. Please, call then for appointments and/or with queries. If you have a query for
my secretaries, or you wish to order drugs (PATIENTS ONLY) and you wish to do so by e-mail
then please put HANIA in the subject of your e-mail.
A recent report from the Royal College of Physicians tells me I have to call ME, Chronic Fatigue
Syndrome. There are lots of other names: fibromyalgia, post viral syndrome, neurasthenia. It is
all the same thing. Whilst the experts argue about names I am only interested in getting sufferers
better. Actually I see ME as a virally induced CFS, but CFS has many other causes. The problem
with Western Medicine is that doctors do not diagnose any more. They treat symptoms with
symptom suppressing drugs instead of getting to the root cause of disease. This arises as a result
of original thinking in medicine being driven by the pharmaceutical companies. The best policy
for drug company profits is to have a population of sick people requiring medication for life – so
never diagnose and cure – that’s bad for business. The multinational pharmaceuticals dictate to
the doctors, medical journals and government and treatment guidelines are set up accordingly.
Diagnosis of CFS/ME (Myalgic Encephalitis)
CFS is a clinical diagnosis based on a characteristic set of symptoms and signs. The symptoms
are severe fatigue which is physical and mental and usually delayed 24-72 hours after exertion,
malaise (ie a feeling of illness), muscle pain usually worse with exertion, muscle weakness
(which manifests in the eyes with episodic, variable, blurring of vision), very poor stamina, sleep
disturbance (whereby the “biological clock” is moved on 4-6 hours and CFSs drop off to sleep
late and wake late), tendency to get recurrent infections, a general hypersensitivity to noise, light,
touch, pain, smells etc and alcohol intolerance. There are so called “autonomic disturbances”
with low blood pressure (feeling faint), poor temperature control and intolerance of extremes of
temperature and inappropriate sweating. The mental fatigue manifests as poor short term
memory, inability to follow a line of argument, difficulty reading or watching TV, poor problem
solving ability. There are often other associated problems such as irritable bowel syndrome,
headaches and mood swings.
Common Associations That I See:
Colicky baby, dry skin/eczema, sinusitis/catarrh - allergy to dairy products.
Fatigue/lethargy - allergy to grains, underactive thyroid
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Cold hands and feet, muscle ache/spasm/cramp/twitching - magnesium deficiency.
Thirst - lack of essential fatty acids - GLA and EPA (evening primrose/fish oil).
Natural addicts - some people get "hooked" on things easily - often sugar, caffeine, tobacco,
alcohol, wheat, cheese, running, chewing gum etc. They tend to substitute one addiction for
another. They often have allergy problems.
White flecks on the nails - trace element imbalances, especially zinc.
Sugar craving/wind and bloating - gut fermentation problems.
Headaches - allergy to tea, coffee, caffeine, dairy products
There are usually few physical signs. Sometimes there are tender trigger points in muscles and
tendons, sometimes signs of chronic infection such as swollen tender lymph nodes in the neck of
low grade fever. However usually there are no abnormalities on physical examination – indeed
often the patient looks well.
Depression is not part of CFS but can arise in any patient who has been chronically ill with “no
light at the end of the tunnel”. The main cause of depression in CFS patients is bad treatment by
their physicians. It appals me that so many physicians are able to send their patients away with no
coherent sensible management plan or glimmer of hope for the future.
Blood tests merely serve to exclude other diagnoses - there is no simple test currently available to
diagnose CFS. The most definitive test is probably a SPECT scan although more recently Prof
Behan from Glasgow has developed a series of neuro-endocrine tests which are specific for CFS
(and usually make the poor patient feel awful). These might be useful for medico-legal cases but
are impractical for day to day diagnosis.
I have come to the view that CFS is simply a description of a group of symptoms with several
causes, of which more than one may be present in any individual. Most patients present with CFS
following a viral infection and therefore it has been assumed that viral infections cause CFS. I
don't believe this is entirely right. I think people are predisposed to getting CFS partly through
genetic factors and partly by the way they live their lives. A viral infection just happens to be a
powerful stress or trigger, i.e “the last straw”, which tips them into CFS. I am increasingly seeing
patients with CFS following exposure to toxic chemicals such as organophosphates and more
recently following silicone breast implants. It is no coincidence that the increasing incidence of
CFS parallels rising environmental pollution. I suspect that toxic chemicals damage the immune
system so that it is unable to deal adequately with viral infections leading to a CFS.
In some respects the body is not very clever. It can only respond to noxious things in one way –
that is with inflammation. It is inflammation which releases cytokines, interferons, leukotrienes,
prostaglandins etc which causes symptoms. It is not the virus which causes symptoms in ‘flu – it
is the body’s reaction to that virus which makes you feel ill.
Since inflammation results from infection (viral, bacterial or fungal), from allergy, from toxic
stress, from cancer, from physical damage (trauma, heat cold) etc, it is almost impossible to
work out the cause of the inflammation from physical symptoms and signs. A good history of
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how the illness developed and the chronology is essential to elucidate the underlying causes.
Tests can also be very helpful to exclude other diseases and causes. By the time I see patients
with CFS they have usually been worked up but the following tests should be done: full blood
count and ESR (a sign of inflammation), urea and electrolytes, liver function tests, serum
calcium, urine analysis, autoantibody screening, thyroid function tests (TSH and T4) and serum
cortisol. Where there are symptoms pertaining to a specific area such as the gut, tests need to be
done to exclude ulcer disease, gall bladder disease, cancer and so on.
Overview of Treatment:
What Must Be Done In Every Case All Of The Time
Getting somebody better from CFS is like solving a jigsaw puzzle - you have to get all the pieces
in the right place at the same time to achieve a cure. The problem is that we don't even know
what all the pieces are! But there are some very obvious ones, without which a cure is unlikely.
The pieces which I know to be important in every case are:




Rest – REST,
Good quality sleep - SLEEP AND SLEEPING DRUGS, CFS AND SLEEP DISORDERS
Diet - HEALTHY DIET
Trace elements and vitamin imbalances - SUPPLEMENTS IN CFS. These also help to
prevent the recurrent infections which are the bane of CFS.
What Must Be Tried In Every Case
All CFSs must observe the above all the time to improve. However for some people one or more
of the following problems are important. When I first started treating CFS I used to try these
things one at a time. However I find I get much better results by doing as many things as I know
to do straight away. The logic here is that the priority is to get the patient feeling better as quickly
as possible. Then one can knock off the treatments one at a time and see if stopping causes
relapse – if so reinstate at once. The second reason is that by the time someone has been ill for
several years, there will be more than one “biochemical glitch” causing the problem. This is a bit
like a horse being lame because it has 4 nails stuck in its foot. Only by removing all four nails
will you render him sound again.
1. Poor magnesium status is present in at least 90% of CFSs (treated by injections, oral
supplements and magnesium per rectum) - the main symptoms of deficiency are fatigue, cold
hands and feet, muscle cramps/spasms and pain, vivid dreams, muscle pain. SUPPLEMENTS IN
CFS, MAGNESIUM BY INJECTIONS, P.R. MAGNESIUM.
2. Vitamin B12 injections - Professor Behan, who is a "big cheese" in the CFS world has shown
there is a high incidence of CFS in patients with Gilbert's syndrome. Gilbert's is a mild liver
disorder characterised by slightly raised liver enzymes. It means effectively that the liver does not
work at 100% efficiency. The liver is a vital organ for detoxifying poisons (which may be natural
plant toxins or artificial chemicals). If it does not detoxify well, poisons or toxins accumulate in
the body and cause disease.
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The point about B12 is that it is an important co-factor for liver detoxification and can be
effective in improving levels of general well-being. The injections are very safe and, with
training, can be self-administered. Initially I try 2mgs (2 ampoules) every week for 6-10 weeks,
then twice weekly (only available on prescription) see B12 SCIENTIFIC PAPER. I find this
particularly helpful for chemically induced CFS/ME. I like to try B12 in all my patients at some
stage.
Work in the USA on CFS patients found undetectable levels of B12 in the brain (irritatingly I
can’t reference this.
3. Food intolerance (about 50%, especially grains such as wheat). This is suggested by a history
of food related problems often pre-dating the onset of CFS such as irritable bowel syndrome,
migraine and depression, - also patients with multiple symptoms (the "core" symptoms of CFS
are profound fatigue, malaise, and muscle aches), or a positive family history. ELEMENTAL
DIET, SPECIFIC CARBOHYDRATE DIET.
4. Dysfunctional gut syndrome (this used to be called "candida", but since this organism has not
been unequivocally proven as the cause, the name has changed). The main signs are a history of
antibiotic use, sugar craving, wind and bloating, chronic thrush infections (either mouth, vagina,
feet, nails). See GUT FERMENTATION TEST, MANAGEMENT OF A POSITIVE GUT
FERMENTATION TEST, TREATMENTS FOR GUT DYSBIOSIS. If I have a patient who has
not responded to the elimination diet and still has gut symptoms then I would consider an
antifungal regime.
5. Hyperventilation - often "driven" by low magnesium and allergies. HYPERVENTILATION.
6. Depression - this is not a primary part of CFS but often arises after time and when enough
people have told you that it is "all in the mind" and all you have to do is "pull yourself together".
REST SHEET. PLASTIC ROSE SYNDROME. Most doctors do not distinguish between
sadness at being ill, frustration at being ill and depression. I often use low dose anticholinergic
drugs at night which often make patients feel better (such as amitriptyline 10mgs nocte)
7. Pain relief - chronic pain causes fatigue - PAIN KILLERS IN ME. Pain is often caused by
muscle spasm secondary to magnesium deficiency.
8. Chronic undiagnosed sub-clinical infections or infestations. The most important seem to be:
gut parasites - Helicobacter pylori (this is the cause of stomach and duodenal ulcers - these are
not always caused by stress!) amoebiasis, giardia and blastocystis hominis; dental sepsis; chronic
tonsillitis (especially if there is a long history of sore throat), fungal nails, yeasts and pelvic
inflammatory disease (10% of young adults are infected with chlamydia). I suspect parasites
especially if the problem dates from an abdominal upset or travel abroad. CHRONIC
UNDIAGNOSED INFECTIONS. Tests for gut infections can be done at Great Smokies
Laboratory in the USA.
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9. Chemical sensitivity - this is becoming the most common cause of failure in those people who
fail to respond to the usual "work up" CHEMICAL ALLERGIES, MOVING HOUSE (not in this
handout), DETOXIFICATION. Chemical sensitivities are very common in CFSs who also have
gut dysbiosis. I recommend a recent publication by the British Society for Allergy Environmental
and Nutritional Medicine (I am its secretary) Multiple Chemical Sensitivity (I am a joint author)
Cost £10, available free on www.bsaenm.org.uk. Chemical pollution is a much greater problem
inside buildings compared to outside, but some people do sensitise to ourdoor air pollution. The
only answer here is to move to a cleaner area – largely speaking the east side is more polluted
than the west side (with the exception of South Wales and Merseyside). If you find you are
noticeably better in a warm climate (eg the Mediterranean) then suspect either chemical
sensitivity and/or mould allergy.
10. Dehydration. The best way to quench thirst is by drinking water. All other drinks contain
substances which need water to be excreted (such as sugar, salt, flavourings etc) and some are
diuretics (such as caffeine). Top athletes will drink regularly to maintain their level of
performance. I recommend people drink at least 2 pints of water daily as well as their other
drinks. Most CFSs are thirsty due to low levels of ADH (anti-diuretic hormone). All hormone
levels in CFS tend to be low which probably reflects the hypothalmic-pituritary-adrenal axis
inactivity in CFS.
11. Salt. Many CFSs have low blood pressure which can cause fatigue. Unless you suffer from
high blood pressure, eat 1/2 teaspoonful of salt daily on food. Use Solo Sea Salt, a low sodium
(41%)mineral sea salt which also contains potassium (41%) and magnesium (17%) and other
trace minerals (1%). It is available from Tesco, Sainsbury, and Safeway. I can supply 200gms at
£2.50 inc p and p. I am interested in this product because of its trace mineral content – sea water
contains all trace minerals essential to human metabolism and there may well be essential
minerals that we don’t know about present in sea salt.
11. Chemical poisoning. I see many farmers with so called "sheep dip 'flu". This is CFS caused
by exposure to organophosphates and other pesticides. Part of Gulf War Syndrome which is
largely a CFS is also caused by organophosphates (and other factors). Which begs the question,
how much CFS is caused by low dose exposure to organophosphates in foods? All our foods are
contaminated by OPs through our chemicalised farming industry. The Royal College of
Physicians estimate the level of CFS to be 2% of the population. This seems too high to me, but
is this epidemic caused by toxic foodstuffs? Silicone breast implants can also cause a CFS by
activating the immune system and causing chronic inflammation. Many other chemicals can also
cause problems. I have recently been involved in two cases of CFS caused by exposure to toxic
chemicals (I suspect formaldehyde) in the chicken farming industry. Similarly carbon monoxide
poisoning can present with CFS.
In all these cases the “treatment” is strict avoidance of chemicals and anticipating future
problems!
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12. Poor thyroid output. This can be checked by measuring blood thyroxine levels. THYROID
HORMONES IN THE TREATMENT OF CFS, THYROXINE, ME AND THE THYROID
GLAND by Dr Skinner). I am indebted to Doris Jones for pointing out that thyroid insufficiency
may well be caused by fluoride in the water – no fluoridated toothpaste or water! There is a
simple biochemical explanation – fluoride is a close relative of iodide and the thyroid gland gets
them muddled up. Doctors will tell you that the most sensitive test of thyroid function is the TSH
– the hormone released by the pituitary gland to stimulate the thyroid gland to produce T4.
However in CFS patients the hypothalamic-pituitary-adrenal axis is damaged and not working
properly. Therefore one sees a normal or low TSH and depressed T4 in CFS.
13. Adrenal insufficiency. Work in the 1950s by Hans Selye is relevant here. He studied stressed
rats. In the short term the rats coped well with stress, but when they were sacrificed he found
enlarged adrenal glands. The glands had enlarged in order to pump out more cortisol and stress
hormones to allow them to cope with stress. If the rats were rested then the adrenal glands
recovered to their normal size. However if the stress was unremitting then eventually the rats
collapsed and died. Examination of these adrenal glands showed shrinkage with minimal output
of stress hormones.
I believe CFSs are the result of unremitting stress causing the adrenal glands to partially fail. The
adrenal gland is the equivalent to the gear box of a car – it allows the car to move up a gear when
the accelerator pedal (stress ) is applied. If the gear box does not work, the engine screams but
the car goes no faster – sounds familiar?
15. If I do not get results with the above then I consider Enzyme Potentiated Desensitisation. This
has been proven in placebo controlled double blind trials to be effective in the treatment of
allergy. It seems to work as an immune stimulant. I often use it when there is obvious allergy.
However some of my CFS patients see substantial and worthwhile improvement with EPD for
reasons unknown!
Treatments Which Are Not Worth Trying
Graded exercise – this is positively harmful when CFS is active. I find it quite extraordinary that
so many doctors seem to advocate this as a treatment. It is as if they are unable to distinguish
between CFS and lack of fitness! Let’s face it, if graded exercise worked then the diagnosis could
not possibly be CFS. The only possibly explanation I can think of as to why this has stuck in the
medical folklore is that after a physician has recommended this to the CFS patient, the latter
never bothers to attend again for useless advice. The doctor then believes he has cured the patient
because they don’t come back. Has anybody else got any better explanation?
Cold water therapy. This was advocated as a treatment for fatigue by Kakkar. It probably works
because it gives the adrenal glands a huge “kick”. However if the adrenal glands are not working
properly, as in CFS, then the patient feels awful. I don’t recommend cold baths.
Amino acids. I tried these after reading a paper about amino acid deficiencies in CFS. The tests
are expensive, the amino acids expensive and the results very disappointing.
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Glutathione/ATP injections. Again the initial paper looked promising. I tried these on 4 patients,
twice a week over six months but no response from any, so I gave up.
Enada. This sounded like the perfect treatment. I read about it in Autumn of 1998 and faxed the
author straight away. No reply. Six months later it was launched with widespread publicity.
Many of my patients tried it but only 2 reported slight improvement. If Enada was all it was made
up to be, then it would have sold itself through personal recommendation.
Cocktails of Low Dose Antidepressants and Treatment of CFS
April 1998
At the British Society for Allergy, Environmental and Nutritional Medicine meeting in April
1998, Dr David Smith presented his views on the treatment of CFS using cocktails of low
dose antidepressants. His theory is that CFS patients have low levels of neurotransmitters
across the board, namely acetylcholine, noradrenaline, adrenaline, dopamine, GABA,
serotonin and probably others. It is this which causes the multiplicity of symptoms including
fatigue. He has concluded from his studies and his experience with patients that the fatigue in
CFS is central - that is to say the cause is within the brain. These abnormalities are within the
mid-brain, thalamus and hypothalamus and are neurological in origin.
I tried these cocktails for several patients but they just developed the side effects that I see in
most of my patients with any one antidepressant. I was not impressed by this approach and
would not particularly recommend this line.
Fludrocortisone. The idea here was that the fatigue in CFS is caused by low circulating blood
volume and low blood pressure. By using a mineralocorticoid this could be increased. In practice
I found that the fludrocortisone simply caused swollen ankles and the blood pressure was
unchanged.
Alternative Therapies such as homoeopathy, herbal medicine, acupuncture, reflexology,
aromatherapy, osteopathy, etc. Many of these therapies help many patients. However each
therapy is just a tool and only as good as the therapist. I can wield a knife and fork, but that does
not make me a heart surgeon. Try to get personal recommendations.
Weird and Wonderfuls
There are some treatments which I have seen work but I are not sure why! Not that that matters –
if something gets results then that is good enough for me. Eg: Heparin injections.
Healing
Many of my patients see marked benefit from healing, in particular one healer Seka Nikolic (tel:
0171 637 3377, see sheet). She works in combination with a dowser Alf Riggs. Seka charges £60
per session, in London expect at least 7 sessions. I see excellent results with many of my patients.
I know many other consultants who routinely send their patients to Seka.
The National Association of Healers can put you in touch with somebody more local tel 01891
616 080 or 01932 783 164. Some do not charge for their services.
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Geopathic Stress
Natural radiation from the Earth is focused by geology and underground water to create "hot
spots" of radiation which can cause illness including cancer and ME. Such hot spots can be
identified by dowsing and avoided or diverted. Alf visits the home and charges £60 plus his
travel expenses, tel: 01992 719735. Some of my patients have seen marked improvement
following a visit from Alf Riggs.
High Dose Evening Primrose Oil Dr Les Simpson from New Zealand has done work showing
that red cells in CFS patients are stiff. Red cells are wider than the smallest blood vessels they
pass through and so need to twist and distort to pass through. Simpson proposes these stiff cells
get stuck, block the blood and oxygen supply and this accounts for many of the symptoms. He
recommends essential fatty acids (EFAs) to soften the red cell membrane, hence my
recommendation for Essential Fatty Acids. A few patients will respond to high dose EFAs - say
8 capsules daily, but it is an expensive treatment. Try this for 3 weeks.
Recommended Reading
Why ME? Dr. Belinda Dawes and Dr. Damien Downing - available from most book shops.
£4.99.
ME, Post Viral Syndrome and How To Live With It, Dr. Anne McIntyre, Thorsens, 1992, £7.99.
Better Recovery From A Viral Illness - Dr. Darrell Ho Yen from Dodona Books, "Corriemuir",
Viewhill, Inverness, IV1 2EA, £14.50.
Recovering from Chronic Fatigue Syndrome - William Collinge
Nutritional Medicine, A Drug Free Guide To Better Family Health - Dr. Stephen Davies and Dr.
Alan Stewart . Pan Books 1987, £4.99 in paperback.
Guide to Self Healing - Mathew Manning 1989 Thorsens.
M.E. Action Campaign - this is an active national ME support group with locally based contacts.
They produce an excellent journal every 3 months, which contains the recent medical work, new
information about treatments, letters, etc. ME Action Campaign, PO Box 1302, Wells, Somerset,
BA5 2WE, 24 hour help line 01891 122976. I do the readers letters column.
PEGS is a support group for patients with pesticide exposure group. Contact Peter Beaumont,
The Pesticides Trust, 23 Beehive Place, London SW9 7QR.
Local groups:
MEND: ME North Derbyshire, 46 Edinburgh Road, Chesterfield, Derbyshire, S41 7HE
MEDALS: ME Doncaster, 10 Thellusson Ave, Scawsby, Doncaster DN5 8QN, Tel: 01302
787353.
ME North Notts: 3 Roderick Avenue, Kirkby in Ashfield, Notts
ME Leicester: 36 Scraptoft Lane, Leicester, LE5 1HU
Heather Sharpe (Action for ME contact) 27 Ringstead Crescent, Sheffield S10 5SG Tel: 0114
266 4292.
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How Long Before I Recover?
Everybody asks me this question! It depends how you define recovery. If you mean that you want
to get back to how you were before the illness struck, then the answer is probably never. This is
because you will simply set up the same conditions which made you ill in the first place.
People who get better from CFS are those who are prepared to make changes. These changes are
often painful - changes to diet, personal relations, jobs, attitudes, desires, living environment and
so on. If you are not prepared to make changes, recovery is unlikely.
Most CFS sufferers come to me hating themselves. They hate themselves because they can't
function as they used to. People have to learn to love themselves as they are, and to be grateful to
the illness for allowing them to make changes that make them better people to be with. The
people who are best at making such changes get better fastest.
Having said all that, how quickly one gets better depends on what it is that is making you ill. I
have some patients who improve simply by taking supplements, or by sleeping better, or by
eliminating certain foods from their diet. Usually however it is a combination of these factors. It
seems to me that everybody seems to get better in a different way and I am constantly being
surprised! This is part of the fascination of treating CFS!
I am painfully aware that having CFS usually prevents one from earning a living. Therefore the
treatments I suggest start off with the “cheap and cheerfuls” and progress onto those which are
more expensive or difficult. This is the reason why I put EPD right at the end – because it is time
consuming and expensive. However in my NHS practice I would start on EPD soon because the
treatment is free.
Expense of treatments always must be taken into account when thinking about alternative
treatments – I have seen many patients who have spent large amounts of money on untested
treatments.
Dealing With Doctors
There are very few doctors who recognise that CFS exists, of those only a minority actually
understand the devastating nature of the illness and a very few of those have any idea how to
treat it. Unfortunately the view of the psychiatric field headed by Simon Wessely (who has
achieved this by endlessly quoting his own studies) prevails, which is that all you need to do is
give a few antidepressants, cognitive behaviour therapy, graded exercise and bingo – a cure is
round the corner. The key to getting these results is make the patients exercise at the expense of
all other activity, then don’t follow them up long enough to see the relapse.
So do not expect any miracles from your GP. The problem is that the GP is the gatekeeper to all
NHS services, benefits, social support etc, so you need him on your side. With a fully cooperative GP and this book, you can do almost everything which I can offer.
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Most doctors do not distinguish, indeed do not want to distinguish, between fatigue, frustration,
sadness and depression. If you burst into tears at frustration with the total lack of understanding
that merely reinforces the universal diagnosis of depression. Nearly all CFSs react adversely to
“normal” doses of antidepressants and so they stop them. This is then used as evidence of lack of
co-operation in a difficult patient. Indeed it is this “battle of belief” which has to be waged at
every doctor-patient meeting which is so exhausting for CFSs.
Because doctors do not diagnose any more, i.e. they do not look for causes of ill health, they will
be unsympathetic to possible toxic causes of CFS. They receive virtually no training in nutrition
at medical school so expect no help here. Most of them do not accept that food allergy exists
which makes desensitisation seem daft to them. Most have no idea of the many functions of
magnesium but on the basis of complete ignorance will tell you that magnesium injections are
dangerous. Because they only use B12 for preventing pernicious anaemia, you will be told that
2mgs a week is an overdose. Because they are used to diagnosing hypothyroidism on a TSH they
will refuse to do a T4. If your GP tells you that he wants to consult with colleagues before
sanctioning a treatment, then the battle is already lost.
They will ask for evidence of success for these treatments. However the best results come from a
package of treatment which includes all the above factors. Such a package is not amenable to the
traditional method of assessing treatments, namely the placebo controlled double blind trial
(perfectly suited of course to testing drugs and considered the only truly “scientific” method).
However if you do have a doctor who is willing to learn, then the scientific background to this
work can be found in:
Environmental Medicine in Clinical Practice, price £43 available from the British Society for
Allergy Environmental and Nutritional Medicine (BSAENM) PO Box 7 Knighton LD7 1WT Tel
0906 3020010 (premium line 50p per minute)
Effective Allergy Practice cost £5
Effective Nutritional Medicine cost £5
Multiple Chemical Sensitivity cost £10
The Journal Of Environmental and Nutritional Medicine
Clinical Pearls – this monthly paper goes through the world literature pertaining to nutrition –
makes for excellent reading.
If you wish to join the BSAENM which gives you easy and cheap access to these publications,
please telephone the above number and ask to speak to Sue Price.
The Web site address is www.bsaenm.org.uk.
Ideas For The Future
There are two further information sheets which I am preparing at the moment but will not be
ready for this edition. One is about CFS being a state of hypercoaguability – this means CFSs get
tiny clots in their capillaries which impair blood supply. This would certainly explain the
multiplicity of symptoms in CFS and could be treated by heparin injections.
13
The second is the idea that CFS is a channelopathy – ie there is damage to the membrane pumps
which pump magnesium in and calcium out of cells and potassium in and sodium out of cells. A
nice idea but as yet no implications for treatment.
Whilst we are in the future – there is no doubt in my mind that CFS will be the disease of the 21st
century. Ultimately it is caused by overpopulation (and so lots of new viruses and infections),
increasing pace and stress of life and environmental pollution.
14
MANAGEMENT OF CFS – THE DETAILS:
REST
Rest is the single most important factor in allowing CFS sufferers (CFSs) to get better. An
invariable feature of the history is that exercise (either mental, physical or emotional) makes the
symptoms worse. Indeed this distinguishes CFS from depression - exercise tends to improve
people who are simply depressed. In CFS the desire is there but the performance lacking.
However, all CFSs tend to push themselves to their particular limit every day and therefore do
not give themselves a chance to get better.
Most CFSs compare themselves to what they were like before their illness began. This is
hopeless. It is vital to work out exactly how much you can or can't do in a day - and then do less.
Imagine that a normal healthy person has £1,000 worth of energy to spend in a day. The CFSs
only have £100. What is more, this has to be spread out throughout the day in such a way that
they have £20 "change" at the end. This will then allow recovery to occur.
Resting In The Day
Two points about proper rest. By resting, I mean complete rest from exercise, visitors, telephone
calls, reading, computers, talking, child minding, noise and TV. All the above count as activities
which have to be carefully rationed through the day.
The second point is to have a proper rest, when you actually go to bed, regularly in the day,
EVEN ON A DAY WHEN YOU FEEL WELL. The fatigue in CFS is delayed. If you push
yourself one day, expect to "pay" for it 12-36 hours later. So just because you feel well one day,
don't overdo things or you will be worse off the next.
One of my patients, Lydia Noor, has developed a useful technique for rest. Every activity is
scored as to whether it is energy giving (e.g. sleep, lying in bed in a darkened room, meditation),
energy taking (e.g. dressing, walking, talking, cooking, cleaning etc) or energy neutral (easy
reading, easy TV, having a massage etc). Each day is scored in terms of time spent doing each
activity and balanced out so energy input equals energy output. Everybody has their own balance.
But one can quickly see if too much has been done on any one day, in which case a balancing is
necessary. Doing it like this, on a chart, takes the guilt out of resting. It simply becomes a
necessity like eating or drinking.
I can recommend the National Listening Library, a registered charity providing tapes of books to
the chronic sick. The annual subscription is £50, there are no further costs. Contact National
Listening Library, Room 23, 12 Lant Street, London SE1 1QH, tel: 0171 407 9417.
Work
There is a whole spectrum of CFSs from those professional athletes who cannot do their
marathons in less than 2 hours 12 mins, to those who are bed-ridden. Some CFSs can manage
full time work, but very often are operating "on adrenaline" and crash when they give it up. This
15
crash can last several weeks or months. Many can do some part-time work - in which case
afternoon work is the best. Don't try to change the job you are in - never resign or you will lose
valuable rights. I am happy to give sick notes, write to companies/bosses, do letters for early
retirement and fill in disability living allowance forms etc. I never used to charge for these letters,
but because there is so much paper work now, I make a charge reflecting admin/time costs.
If you work to your limit, then you should do very little outside work - spend the evenings and
weekends resting.
Get Organised
The people who get CFS are those who "burn the candle at both ends". They hold down a
demanding job, care for a family and are often active sportsmen/women. I see many top athletes
with CFS - professional footballers, England cyclists and swimmers, decathletes, many county
badminton, hockey, cricket and squash players and several quality marathon runners. These
people are the very ones who find it difficult to ask favours of others.
Ask other people to do things. Stop being house-proud. Get a cleaner and dish washer. Simplify
your life. Accept offers of "meals on wheels" from others. Standardise shopping lists so you don't
need to think each time. Arrange for as much food to be delivered as possible - e.g. have a
standing order at the green grocer for £10 worth of fruit and vegetables a week, with the fishman,
with the butcher, milkman etc. Many city areas have organic food delivery. Have standard menus
every week so you don't need to think about what to eat. Choose foods requiring minimal
preparation. Take advantage of a washing machine and drier. Give up ironing - a nonsensical,
energy sapping waste of time and energy. Ironing came into fashion to kills nits and fleas in the
seams of clothes and had a purpose once! I don't iron, but then I always was a scruff!
Managing Energy Levels In CFS
June 2nd 1999
I am very aware that one of the hardest aspects of having CFS is knowing how to manage your
time so that in each day you have enough complete rest. Without this the healing process does
not have the chance to begin its work and the illness goes from bad to worse.
I am grateful to one of my patients, Andy Stephens, for the theory behind this handout. He has a
background in systems analysis which is a tool used to ensure a consistent output from a system.
Lost already? Don’t panic. Andy tells me this can be applied to any system, including the body.
He has used his experience to devise a system to help him pace his activities and predict the level
of activity at which he is going to be well. This is very helpful for CFS patients. It is vital that
they pace all their activities, but most sufferers are driven by guilt because they feel they are not
doing enough. Working out this system for each sufferer means that how much they are or are
not allowed to do in a day is dictated by a few simple guidelines.
Many thanks also to Lindsey Adams, who supplied the figures for our example and made this
handout CFS patient friendly.
16
EXAMPLE (the figures we are going to use to work out the guidelines)
Day
1
2 3
4
5
6
7
8
9
Hours
8 ½ 8 ¼ 10 ½ 9 ½
8
Of Activity
Differences
¼
2¼
1
1½
8¾
¾
10 ½
1¾
9½
1
11 ½
2
10
11
12
8¾
9½
12 ½
2¾
¾
3
This is how you do it for yourself:
1/ You keep a daily record of all your activities, which you log on an hourly chart (not shown
here). You do it for a month paying careful attention to record the periods of rest when you are
either sleeping, lying down without the TV or radio on, or are in the bath. Gentle yoga, relaxation
or meditation can also be logged into this category.
2/ You add up the hours of activity for each day, i.e. day 1 - 8 ½ hours, day 2 – 8 ¼ hours etc.
3/ Now you work out the difference between each day’s hours of activity and the next. In our
example the difference between day 1 and day 2 is ¼ hours, between day 2 and day 3 is 2 ¼
hours and so on.
4/ Add up all the differences: ¼ + 2 ¼ +1+1 ½+3/4 +1 ¾ +1+2+2 ¾ +3/4 +3 = 17.
5/. To find the average of this sum you divide 17 by the number of differences (the number of
differences in our example is 11) : 1711=1.54
(Don’t ask where 1.128 comes from
– it is just a number that works for this
system!)
This figure 1.73 (rounded up to 1 ¾ hours) is called a standard deviation from the average.
7/ Total up the daily hours of activity - in our example the sum is 115.75 hours. When divided
by the number of days it gives you your average hours of activity per day.
115.75 12=9.64 (rounded up to 9 ½ hours)
6/ Use this average and multiply it by 1.128 = 1.73
Using these figures we can draw a graph
THIS GRAPH DOES NOT APPEAR ON THE E MAIL VERSION BECAUSE I DON’T HAVE
A SCANNER.
RULES
1. 9 ½ hours of activity per day (the average amount of activity in your day) ensures that you will
remain well unless something unexpected happens (extra stress you did not budget for)
17
2. If you exceed your standard deviation of 1¾ hours (in our example 9 ½ + 1 ¾ = 11¼ hours)
more than 3 days in 4, expect to relapse.
3. If you exceed twice your standard deviation (9½ + 1¾ + 1¾ = 13 hours) more that 1 day in 4,
expect to relapse.
4. If you exceed three times your deviation (9½+1¾ +1¾ +1¾=14¾) at all, expect to relapse.
5. If you exceed the average mean line (average hours of activity per day, i.e. 9½ hours) on more
than eight consecutive days, expect to relapse.
In plain language rule 2, for example, means that if you have 12 ½ hours of activity in a day 3
days out of 4, you must be prepared that you will relapse.
This does make sense. What it means is that to work most efficiently you should never do more
than 11 ¼ hours activity and never less than 7 ¾ hours. Working outside these limits mean you
become inefficient and waste energy needlessly.
This is comparable to a marathon runner. If he is to succeed he must pace himself carefully and
always run within certain limits – not too fast, not too slow. The runner who sprints 100 metres,
then walks 100 metres is not going to manage a marathon. The runner who jogs along at
comfortable running speed will make it!
This technique can be applied to any activity. Andy tells me he does similar graphs for changes
of activity. Again this makes sense as each change takes up mental energy reserves and shows
that there is a limit to chopping up major tasks into smaller ones.
Furthermore this system can be used to monitor how the system is performing. Andy finds this
works best with pulse and temperature. By measuring these daily you can get the raw material to
make the graphs. You can then work out that if your pulse or temperature dips below three
standard deviation or breaks the other rules, expect to relapse the next day.
For further information on this statistical package look up the British Deming Association
Salisbury How to SPC (Statistical Process Control), Why to SPC on the Internet or phone for the
booklet
FEEDBACK PLEASE – THIS WORKS FOR ANDY, DOES IT WORK FOR YOU?
This seems like a perfect opportunity to include some more wisdom on the subject of pacing
yourself. I am grateful to yet another CFS patient of mine, Sylvia Waites, for sharing these
guidelines with me - and you!
1.
2.
3.
4.
THE TEN COMMANDMENTS FOR REDUCING STRESS
Thou shalt not be perfect or try to be.
Thou shalt not try to be all things to all people.
Thou shalt leave things undone that ought to be done.
Thou shalt not spread thyself too thin.
18
5. Thou shalt learn to say “NO”.
6. Thou shalt schedule time for thyself, and for thy supporting network.
7. Thou shalt switch off and do nothing regularly.
8. Thou shalt be boring, untidy, inelegant and unattractive at times.
9. Thou shalt not even feel guilty.
10. Thou shalt not be thine own worst enemy, but thine own best friend.
SLEEP AND SLEEPING DRUGS
July 1998 (revised February 2000)
One of the most important aspects of health is a good quantity of good quality sleep. Lack of
either can cause a chronic fatigue. In any person with fatigue, I always ask about sleep.
I instinctively do not like prescribing drugs. However I do use them for sleep, if only to restore a
normal pattern of sleep after which they can be tailed off or kept for occasional use. So often
CFS patients get into a bad rhythm of poor sleep at night which means they feel ill for the day,
which means they get another bad night. They are half asleep by night and half awake by day.
Furthermore their natural time for sleep gets later and later. They go to bed late and if they have
to get up at the usual time, chronic lack of sleep ensues.
Often some medication is needed to facilitate sleep. Most CFS patients react badly to drugs in
normal doses. I like to use combinations of low dose herbals, natural remedies and prescribed
drugs to get the desired effect. Everybody works out their own cocktail which suits. This may
have to be changed from time to time. I like to supply a “starter pack” which has a selection of
hypnotics to try. Once you have worked out your best combination you can either order it from
me, or your GP or whatever is easiest. Please note that I am only able to prescribe the
sleeping drugs, and any other medication listed in this booklet to my patients and not
members of the public.
I am always asked about addiction. My experience is that this is rare. One has to distinguish
between addiction and dependence. We are all dependant of food, but that does not mean we are
addicted to it. We are all dependant on a good night’s sleep for good health and may therefore
become dependant on something to achieve that. This does not inevitably lead to addiction.
Addiction is a condition of taking a drug excessively and being unable to cease doing so without
other adverse effects. Stopping your hypnotic may result in a poor night’s sleep but no more than
that. This is not addiction but dependence.
Getting A Good Night’s Sleep
The first step is no stimulants (such as caffeine in tea, coffee, coca cola) after 4pm.
There are some “auto suggestion” techniques which may be helpful. Lie in bed, then start with
your feet and tell them to go to sleep. Make them feel heavy and tired. Soon they will go “numb”
so you can’t feel them. Work on your hands, then up the legs, arms and trunk until you are numb
from the neck downwards. With practice this just takes a few minutes. Now you’ve done the easy
19
bit getting the body to sleep. The hard bit is getting the brain to sleep. To do this you have to stop
the mind flitting about from the past to the future. Most people are kept awake by thinking about
the events of yesterday and what is happening tomorrow either to them or family or friends.
Don’t allow yourself to do this. See it as a complete self indulgence, which is not permitted.
Keep your brain in the present either by concentrating on breathing, the traditional counting
sheep or whatever. I bring into my mind a walk I do and see the path, hedges, gateways, views,
muddy puddles, ponies, sheep etc or whatever I see on my walk.
The second step is to try some sort of hypnotic. They all work differently and so I like to use low
dose combinations until you find something that suits. Choose from the following:
 Melatonin 3mgs (one tablet). CFS patients have a poor output of hormones from all their
glands namely the hypothalamus, pituitary, adrenals, thyroid and also the pineal gland. The
latter is responsible for producing melatonin, the natural sleep hormone. I am aware of two
doctors namely Chrissie Vesselinova Jenkins and Dr Andy Wright, who consistently find low
melatonin levels in the patients. It seems logical to me therefore to try this first. I can supply,
60 tabs cost £11. One or two of my patients have become depressed with melatonin, so be
aware of this. On the container it also states melatonin should be avoided in autoimmune
disorders, but I can find no reason why this should be so.
 Valerian complex tablets 1-4 at night. This is a herbal preparation containing valerian, hops,
passiflora, scullcap, wild lettuce and Jamaican dogwood. I can supply this – 100 tabs cost
£3.60. If you need to avoid sugar, then the sugar coating should be washed off the tablets in
some water.
 Nytol (diphenhydramine 50mg). This is a sedating antihistamine available over the counter.
The dose is 1-2 at night. 16 @ £3.50.
 Kava Kava 500mg. This is a herbal preparation with a long traditional use in the Pacific
Islands, but it has also been clinically studied in Europe. Taken at night it encourages restful
sleep. The dose is 1 to 3 capsules at bedtime with 8 oz warm water. Start with one capsule and
if you tolerate it, increase the dose until you feel the benefit. Again, I can supply this
preparation – 50 capsules cost £10.00
If there is no improvement with a combination of the above, or if there are intolerable side
effects, then I would go on to a prescribed drug. I usually start with one of the sedating
antidepressants such as :
 Amitriptyline 10mgs. 100 @ £1.50. Amitriptyline 25mgs 100 @ £1.50. Usual dose 10-25mgs.
 Dothiepin 25mgs (half to one capsule) 100 @ £5, adjusting the dose to suit. By ‘suit’ I mean a
night’s sleep is achieved without feeling hung over the next day.
 Surmontil 10-30mgs at night. Surmontil 10mgs 28 @ £8, Surmontil 25mgs 84 @£30.
St John’s Wort (hypericum) may be useful. It seems likely that CFS patients have low levels of
neurotransmitter across the board. This is suspected because many are helped by very low doses
20
of antidepressant - an effect different from their antidepressant effect (see LOW DOSE
ANTIDEPRESSANTS AND TREATMENT OF CFS). St John’s Wort is a herbal antidepressant
which works by blocking the breakdown of neurotransmitters. Some caution is needed. I have
two patients made much worse by St John’s Wort. Don’t take more that 300mgs (one tablet)
daily initially. The usual dose for depression is 900mgs daily, but since most CFSs react badly to
“normal” doses of antidepressant, try higher doses with care. I can supply St John’s Wort tablets
200mgs – 100 tabs for £2.50 if you cannot get them from a local health food store.
If the response is unsatisfactory, then use prescription hypnotics.
 Short acting temazepam 10mgs. This gives about 4 hours of sleep usually with little hang
over. It can be very useful to take in the middle of the night if you are someone who wakes
and can’t get off to sleep again. Temazepam has got a bad name because the drug addicts were
taking the gel inside the capsule to inject directly into the blood stream. Tablets obviously
prevent this form of abuse but are slightly more expensive. 100 tabs @ £5.
 Medium acting zopiclone (Zimovane)7.5mgs. 28 @ £6.50.
 Medium acting diazepam 2mgs. 100 @ £1. Diazepam 5mgs 100 @ £1.
 Long acting nitrazepam 5mgs. 100 @ £2.
The prices quoted are what I can supply at. To these prices I add on £5 per order to cover postage
and packing and administration. Every prescription issued has to be checked by me and recorded
in the clinical notes. Please, allow a week between ordering and me supplying. I can only
supply prescription drugs to my patients.
The “starter pack” consists of :
- Nytol one a night
8 tablets
- temazepam 10 mgs
10 tablets
- amitriptyline 10 mgs 10 tablets
- diazepam 2 mgs
10 tablets
- melatonin 3 mgs
10 tablets
- Valerian complex
10 tablets
- Kava Kava 500mg 10 capsules
The cost of this pack is £10.00.
Different people will respond to different combinations of hypnotic. For example, one person
may take a melatonin and two valerian at night, plus a temazepam when they wake at 3.00am.
Somebody else may be best suited by 25mgs Prothiaden (dothiepin) at night with a Kava Kava or
Nytol. Don’t be afraid to try combinations - there are no serious side effects that I am aware of
with any of these used in combination. However, don’t change more than one thing at any time
otherwise you (and I) will get confused!
CHRONIC FATIGUE SYNDROME AND SLEEP DISORDERS (March 1997)
I spent at day at a sleep laboratory with Dr Vesselinova-Jenkins at the Lister Hospital in London.
Dr Vesselinova is a fascinating person. She developed an oral diptheria vaccine in Bulgaria
21
before coming to UK through marriage. She then set up the first sleep laboratory in UK and was
the first person to describe central and obstructive sleep apnoea. She also was the first in UK to
use melatonin to treat sleep disorders and brought melatonin here. She is primarily a researcher
and has produced many papers on sleep problems.
I was interested in Dr Vesselinova's work because I know I do not treat the sleep problems of my
patients particularly well. She was interested in me because she was doing new research into food
allergy, had found that many sleep disorders were related to food intolerance and these patients
did well on EPD. She wanted to learn about EPD.
Patients Who Don't Sleep
Dr Vesselinova has been measuring blood and salivary melatonin levels through the night and
found them to be depressed in CFS patients. This is to be expected since we know that hormone
output from the hypothalamus/pituitary/adrenal axis is abnormal, so the pineal, a similar gland, is
likely to be affected. She uses low dose melatonin 2mg at night. This helps restore the normal
sleep rhythm. Patients must put themselves to bed at a more "normal" hour, darken the room (or
wear shades), cut out noise etc to allow sleep to come naturally. She tells me most patients can
reduce their sleeping tablets and then stop them once they are on melatonin.
It is now possible to measure melatonin levels by a salivary test. This tells us when you are
producing melatonin and how much but it cost £72. I am happy to prescribe melatonin “blind”.
However some patients get depressed on melatonin – so this needs watching out for.
Patients Who Sleep Excessively
These are the patients she monitors for breathing disorders. What Dr Vesselinova is finding is
that these patients stop breathing whilst asleep. There are two common reasons for this. One is
called "obstructive" sleep apnoea and occurs when the body is trying to breathe (the respiratory
muscles are active) but there is a blockage and no air passes through. Often these patients snore
and may be overweight.
The other type of sleep disorder is called "central sleep apnoea". In this case patients have
abnormal respiratory centres which simply forget to tell the body to breathe. This may be caused
by viral damage or toxic damage from chemicals. This is the common type of sleep disorder in
patients with CFS.
When the body stops breathing, oxygen levels fall in the blood. Dr Vesselinova can measure this
using a pulse oximeter and showed me some recordings. It is quite extraordinary to see how
patients just stop breathing with no muscle movements and no respiratory efforts whilst the level
of oxygen in the blood steadily falls by more than 10% of what it should be. Suddenly the body
"wakes up" to this dire situation and starts to breathe again. Patients have no idea they are doing
this but their sleep is abnormal, they often wake regularly through the night without realising
why, they do not feel refreshed in the morning, often waking with morning headache. There is
also excessive daytime sleepiness and intellectual deterioration. This is hardly surprising because
22
low levels of oxygen will damage brain cells - the cells in the body most sensitive to oxygen
levels.
Treatment Of Sleep Apnoea
Some patients have sleep apnoea because of food intolerance. The commonest foods are wheat
and dairy products. However, if this does not correctly "reset" the respiratory centre then other
things can be tried. The first is low dose aminophyline which is a mild respiratory stimulant. Too
much causes sleeplessness. She suggests using Slo-phyllin 60mgs at night, 56 caps @ £1.96, on
prescription. Another possibility for obstructive sleep apnoea is low dose amitriptyline 5mgs,
which improves the muscle tone of the airways and helps prevent the airways collapsing.
However Dr Vesselinova's main treatment for sleep apnoea is to use oxygen at night. This
prevents the very low oxygen levels developing and so sleep becomes more normal. She insists
this must be done every night for at least 6 months to allow the respiratory centre to adjust back
to normal. Most patients just need 6months oxygen but some need long term oxygen at night. But
since they feel so much better and are able to function as normal human beings, the effort is well
worth it.
Oxygen is given via an oxygen concentrator. This is a machine which concentrates oxygen from
room air and delivers it via nasal prongs into the nose at a rate of 1.5 litres/min. Patients are not
breathing 100% oxygen, merely enriched air. These machines are available on the NHS usually
for patients with severe airways obstruction. They can be purchased privately and I will find out
prices. However, they will not be cheap and an accurate diagnosis is vital before investing this
sort of money. I have on patient who tried this treatment and it did nothing for him.
Comment
Ideally all patients should be worked up in a sleep laboratory and the exact nature of their sleep
disorder worked out. However, this is simply not possible as not all Health Authorities have
access to a sleep laboratory and the Lister Hospital laboratory is private. However, just watching
a patient sleep may give valuable clues and it could well be worth arranging for this to happen.
The observer does not need to be especially skilled.
A normal person sleeping normally breathes in and out slowly, rhythmically and regularly and
each breath is even. For sleep apnoea, look for cessation of breathing or so called "CheyneStokes" respiration, where the breathing becomes progressively heavier, then progressively
lighter before stopping a while before building up again to heavier breathing. Any of these
observations would support a diagnosis of central sleep apnoea.
For obstructive sleep apnoea (i.e. the airways are blocked) you will see the patient making
muscular efforts to breathe (ribcage, chest and abdomen working hard) but no air passes through
the mouth or nostrils. When air suddenly gets through there may be a grunt or snore and the
patient may partly wake.
23
I can't think that it would be very difficult to make a device that electronically records movement
of the chest so one could get an actual record of whether or not they are breathing. I have so
many clever patients there must be someone out there with an idea - in which case please get
back to me!
If anybody would like to be seen by Dr Vesselinova, please ask me to write a letter of referral.
The first step in cognitive behaviour is to reduce the amount of physical and mental work
each day until all days are about the same. The level of activity is then very slowly increased
each day. The key here is to vary activity. Different parts of the brain and body have to be
exercised. One of the most active areas of the cortex is that which is concerned with vision.
Processing information from a television for example requires much more activity than
listening to music. Television needs to be rationed. Similarly physical exercise should be
done using as many different muscle groups and initially should be limited to simple
stretching exercises without weights.
The level of physical and mental exercise is very gradually increased. It may well take
several months before significant changes are seen. To adjust the level of activity to what is
appropriate you have to judge things by the next day. If there is delayed fatigue then you have
overdone it. There is a very fine “window” between too much and too little. Straying either
way makes CFS worse!
NUTRITION
The Healthy Diet
People often ask me what is a healthy diet and of course there is no simple answer. There is a
current fad for low fat diets but these also have their drawbacks. It seems there is a higher
incidence of accidents and suicide with low fat diets - which cancels out savings from heart
attacks and strokes! This is thought to be caused by changes in neurotransmitters on low fat diets,
i.e. they make you sad and clumsy!
For most people "everything in moderation" applies - so long as the "everything" applies to high
quality foods. For the allergics "one man's meat is another's poison". Most people will have to
sort out their own diet based on healthy principles (see below).
In the management of CFS I am increasingly coming to the view that low fat diets are bad for
you. We know from nutritional studies that most CFSs have low levels of omega 3, omega 6 and
arachidonic acid - i.e. the whole spectrum of fats! Whether this is cause or effect is unknown.
However, it seems reasonable to try to correct this through diet.
Vegetarianism is not necessarily more healthy. In fact I encourage CFSs not to be vegetarians
because diets are artificially restricted and so people risk picking up food allergies, their diet is
harder work to prepare, they can be less flexible and it is likely to be lower in protein. Proteins
24
are essential in a diet for an ill person to allow recovery. I suspect that whilst vegetarianism may
protect against cancer, it may predispose to CFS.
Food which tastes good is likely to be good food. Taste is a sense which is trace element
sensitive - i.e. foods which are deficient in trace elements don't taste so good. Most people can
tell you the difference between home grown fresh vegetables and 3 day old shop vegetables. The
true free range chicken is a rare beast but quite different in taste from the factory bird.
General Rules
Drink good quality water. Spring water (direct or bottled) is undoubtedly the best. Second best is
filtered water (water filters should be changed regularly), with tap water a poor third.
Have as varied a diet as possible - everything in moderation is the key. Eat at least 8 oz of green
vegetables and 3 pieces of fruit daily. Don't forget nuts and seeds - these are one of the richest
sources of trace elements and vitamins - have 2 oz daily. Nuts are rich in selenium. Selenium
will substantially reduce your risk of heart disease and cancer.
Butter in moderation is good for you. Margarine is artificially prepared by heating oils to high
temperatures. This causes formation of trans-fatty acids, which are poorly metabolised in the
body. Margarine has no "health" advantages over butter. Use best quality "cold pressed, virgin"
olive oil for cooking and salads. Other oils have often been heated and therefore denatured. The
mono- unsaturated fats are thought to be best in protecting against heart disease.
Sugar has no nutritional value but is highly addictive. Avoid it. Tea, coffee and cocoa are natural
chelating agents and will bind to trace elements so blocking their absorption. Tea is the main
cause of iron deficiency anaemia in the country. Drink these beverages between meals (not with
food).
Use wholemeal bread and wholemeal flour for baking - white flour has been stripped of the outer
layer which contains most of the nutrients and fibre. Fruit juice will enhance absorption of trace
elements because of its vitamin C content, so drink this at mealtimes.
Don't eat excessive amounts of dairy products. Our physiological requirements of calcium to
magnesium is in the ratio 2:1. Dairy products contain 10:1 and since these elements compete for
absorption, excessive consumption of dairy will result in a relative magnesium deficiency.
As soon as something "dies" it rots and loses its goodness. So avoid such "dead" foods as those
in tins and packets. Buy fresh, "alive" foods. The only exception is frozen meat, and possibly
fish, which is not destroyed by freezing. Eat meat which has "had a life". The fatty acid content
of factory farmed fish, pork and poultry reflects that of the food it eats - i.e. poor quality. Eat free
range - lamb and beef probably offer the best value in this country. There is a myth that chicken
is a healthy meat - if one could see the conditions under which chickens are kept and the quality
of food they eat one would understand why chicken is a low quality food. Indeed Prof Richard
25
Lacey has shown that the fats in factory chickens are richer in the unhealthy saturated fats than
the fats in beef.
Foods grown inorganically with nitrates outstrip their nutrient supply and may therefore have an
unbalanced trace element content. Buy organic if possible.
Use salt. Dr David Bell has shown that most CFSs have low blood pressure and low blood
volume – I recommend Solo salt, a sodium reduced sea salt, to use on food and in cooking.
Alcohol in modest amounts is not particularly bad for you, unless of course you have an
intolerance (most people with CFS cannot tolerate alcohol).
Our Western diet is relatively deficient in omega 3 fatty acids - eat oily fish twice weekly and/or
use linseed in cereals.
Cook foods lightly. Vegetables which are boiled to death lose most of their trace elements in the
water. Or if you like your vegetables done this way then you should drink the cooking water. I
recycle all my vegetable water, either for cooking vegetables next day, or soup stock, or gravy or
whatever. Eat foods as unprepared as possible - raw foods are excellent.
Nutritional Supplements
Trace element and vitamin imbalances are very common. To persuade people to take
supplements regularly I must convince them of the need! So here are my reasons:
1. We evolved over millions of years requiring a high calorie diet. Man was physically active
requiring energy to keep warm, hunt, gather, fish and fight. Modern man is a lounge lizard by
comparison. We simply do not need to eat as much. Because we eat less calories, we eat fewer
vitamins, minerals and essential fatty acids which would accompany those calories.
2. There is a one way cycle of trace elements from the soil, into plants and animals, into us, then
out into the sea. We are not recycling onto the land and so we are out of balance. Trace elements
in the soil are being depleted and not replaced, so we too are becoming deficient.
3. Plants cannot absorb trace elements directly from the soil. They rely on fungi called
mycorrhiza which cover the root hairs, absorb soil water and trace elements and put them into a
bioavailable form for the plants to absorb. Artificial nitrogen and pesticides kill mycorrhiza and
so chemical farming gives us malabsorbing plants.
4. Plants grown on chemical fertilisers grow rapidly and outstrip their trace element supplies. For
example cows put on such 'flushed' grass may develop grass staggers - acute magnesium
deficiency.
26
5. We tend to eat foods which have been processed, so many nutrients are lost, and these losses
are accelerated by sugars, caffeine, alcohol and other such social poisons (delightful though they
may be!).
6. We are increasingly exposed to toxins which require vitamins and minerals for their excretion.
These toxins effectively increase our needs for all nutrients. The commonest cause for iron
deficiency anaemia in this country is tea drinking. Tea contains tannin which binds (chelates)
trace elements including iron and so blocks their absorption. More obvious toxins include
pesticide residues, lead, mercury (in fillings), cadmium (smoking), aluminium (water), volatile
organic compounds (perfumes, solvents, exhaust fumes) and so on - a seemingly endless list.
7. The rate of human evolution is accelerating all the time. We are all called upon to make
changes to our lives all the time. This is very stressful. Western man has probably never been so
stressed on an everyday basis than before and this increases nutritional demands.
I believe it is sensible for all people to take nutritional supplements regularly to protect against
deficiencies developing. In the recommended doses I believe it is impossible to do serious harm.
Having said that a few of my patients. especially those who are sensitive to chemicals, do not
tolerate supplements and can feel ill taking them. I take these supplements regularly as do my
family. I consider this superior to health insurance which I do not bother with.
I do not routinely do tests of nutritional status in patients simply because I know what the results
are going to be - i.e. low magnesium, borderline zinc and selenium, low levels of B vitamins and
essential fatty acids. I therefore treat on the "best guess" basis and if I am worried, or in special
cases, arrange for specific tests.
I have agreements with both Lamberts (tel 01892 552119) and BioCare (tel 0121 433 3727)
whereby ALL MY PATIENTS QUALIFY FOR TRADE PRICES. I do not have any financial
arrangements with these companies and am not associated with them in any way. As new
products come available, so my regime sometimes changes. At present (June 1997) I recommend
all my patients, well or ill, (including CFS sufferers) take the following regularly, available from
BioCare:
Morning
 BioCare multivitamin/mineral one daily (this contains B vitamins which can cause insomnia,
so don't take in the evening). Contains vit A 2,000 i.u, B1 25mg, B2 25mgs, B3 50mgs, B5
100mgs, B6 as its active form pyridoxal 5 phosphate 24mgs, B12 30mcgms, inositol 12mgs,
PABA 10mgs, folic acid 200mcgms, magnesium ascorbate 300mgs (vit C), Vit D 250i.u, Vit
E 50i.u. Also zinc 7.75mgs, manganese 0.31mgs, chromium 50mcgms, iodine 38mcgms,
selenium 50mcgms.
 MicroCell Essential fatty acids one capsule – contains oligosaccharides 560mgs, linseed oil
120mgs and GLA 100mgs (equivalent to 1,000mgs of evening primrose oil).
 Vitamin C 500mgs (as magnesium ascorbate)
27
Evening
 Multimineral complex (EAP) one capsule. Trace elements are poorly absorbed and in this
preparation they have been tacked on to a fat, thus improving absorption. The elemental
values are: magnesium 90mgs, zinc 14mgs, manganese 3mgs, silicon 50ugms, copper
200ugms, molybdenum 150ugms, chromium 100ugms and selenium 100ugms.
 Essential fatty acids one capsule
 Vitamin C 500mgs, magnesium ascorbate
Costs (Trade prices Jan 2000
14590 - Multivitamin/mineral 90 @ £13.15. (Three months supply)
144120 – Essential fatty acids 120 @ £10.15
20490 - Multimineral complex 90 @ £13.15
172180 Magnesium ascorbate 500mgs 180 @ £14.80
Postage is free if the value of the order exceeds £20. Otherwise add £1.00 for postage and
packing. All come in vegetarian capsules.
Nutritional medicine has come to the stage that by taking a good dietary, environmental and
family history, backed up by appropriate blood tests, one can predict with some confidence what
a person if likely to suffer and/or die from. I believe by taking the above supplements, one can
increase life expectancy and quality of life. I take these supplements regularly (and don't have
CFS!) as do my family and friends.
Trace Elements in Food (this section added in June 1996)
Trace element deficiencies are common partly as a result of Western style agriculture, food
processing and food choices. They can be corrected by taking the appropriate supplements, but
also by eating the right foods. RDA = recommended daily amount. This differs widely from one
person to another - for example illness increases requirements. The figure after each food is
how much of that food one would have to eat if the daily requirement came solely from that
food.
Magnesium 350mgs: kelp 2oz, wheat germ 4oz, almonds 5oz, cashews 5oz, brazil nuts 6oz,
wholemeal bread/flour 8oz, brown rice 14oz, green leafy vegetables 25oz, soybeans 16oz, cheese
2lbs (!).
Calcium 800mgs: kelp 3oz, cheese 4oz, almonds 8oz, corn tortillas 16oz, brazil nuts 16oz, tofu
14oz, dried figs 14oz, sunflower seeds 14oz, wheatgerm 35oz. Vitamin D in fish oil (and from
sunshine) improves absorption of calcium.
Potassium 2,000-6,000mg: (figures for 4,000) kelp one teaspoonful, rice bran 8oz, wheat bran
12oz, dried fruit 24oz, nuts 10oz, leafy green vegetables 30oz, parsnip 20oz, potato 20oz, banana
30oz.
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Iron: absorption is the name of the game! Iron absorption is blocked by tea and this is the main
cause of iron deficiency in UK. The richest sources are kelp 100mgs in 100gms followed by
wheat germ 9.4, liver 8.8 and meats.
Zinc 15mgs: oysters half an ounce, steak/chops 9oz, pecans 11oz, brazils 12oz, dried milk 12oz,
egg yolk 12oz, oats, rye 12oz. Zinc is often low in vegetarians or people on low protein diets.
Copper 2mgs: Rich in nuts, split peas, liver, meat, butter. Deficiency uncommon except junk
food diets.
Manganese 5mgs: pecans 5oz, brazils 8oz, whole wheat bread/flour 14oz, oatmeal 24oz, rhubarb
30oz.
Iodine 75micrograms: any seafoods 4oz, otherwise very depended on soil iodine levels. If soil
levels O.K then dairy products, eggs, nuts, wholemeal bread/flour. Use iodised salt.
Chromium 200micrograms: meat/liver 16oz, wholemeal bread 18oz, potato 30oz,. Chromium is
poorly absorbed - it is best absorbed from yeast, black pepper, liver cheese and wholemeal bread.
Selenium 200mcgms: levels in food very depended on soil selenium. Since changing from
Canadian to European wheat, U.K selenium intakes have halved in the last 10 years (another
reason for the anti-Europe lobby!). Butter 5oz, herring 5oz, wheatgerm 8oz, brazil nuts 8oz, any
seafoods 10oz, milk 16oz, brown rice 16oz, meats 30oz.
Molybdenum 500mcgms: lentils 9oz, liver 10oz, split peas 10oz, green leafy vegetables 12oz,
brown rice 20oz, oats 24oz.
Wheat bran is rich in many trace elements but contains phytic acid which blocks their absorption.
Vitamin C improves absorption and tea/coffee blocks. Drink fruit juice with meals, tea/coffee
between meals.
Trace element content depends very much on soil levels. Organic foods will have lower water
content and better trace element content than chemical foods.
Sugar, alcohol, caffeine are "anti-nutrients". They require trace elements for their metabolism in
the body and increase requirements.
White flour is markedly deficient in trace elements compared to wholemeal.
Use Solo sodium reduced sea salt to get the trace trace minerals
Low levels of trace elements have the following disease associations: magnesium/potassium with
heart disease, selenium with cancer and heart disease, iodine with hypothyroidism, iron with
anaemia, chromium with diabetes, manganese with epilepsy, zinc with immunity, fertility,
behaviour, etc.
I recently discovered that 98% of all body tissues are replaced every six months. You are what
you ate in the last six months! Junk food produces junk bodies.
My family are hopeless at taking supplements so I put them into the cooking. Fruit salad gets a
sprinkling of vitamin C, oils and minerals get squirted into homemade bread, mashed potato and
soups. It is impossible to disguise the B vitamins (they make the bread bright yellow!) so they go
on the table with breakfast and I bully them until they get swallowed.
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Nutritional Supplements in Acute Infections
CFS patients seem to pick up every "bug going round". This is probably because they have a
rotten immune system. Recurrent colds and 'flu like infections are responsible for many of the
flare ups of CFS. These can be avoided by having vitamin C, A and zinc in store, ready to use at
the first signs of an infection. One patient tells me selenium is equally effective. Fresh propolis
and echinacea can also be helpful.
Drug companies have come up with remarkably few anti-viral drugs which are safe and effective.
The common cold remains a potent cause of ill-health. Furthermore, one viral infection seems to
suppress the immune system allowing others to become established - hence the run of colds so
many people seem to suffer. Some CFSs do not have a "proper cold" with runny nose etc. They
just seem to get a 'flu like reaction every time.
The body does have its own defences against viral infections - some people's are better than
others. However, this can be helped by the addition of specific vitamins and minerals. Generally
speaking, if the symptoms are caught early, about 80% of colds can be avoided and any illness
ameliorated. At the first sign of a cold (i.e. throat tickle, dryness, sudden onset of clear secretions
from nose) take the following:
Vitamin C to "bowel tolerance". If you take enough vitamin C, you will develop slightly loose
stools/diarrhoea. This is what is meant by "to bowel tolerance". With an acute infection,
especially gastroenteritis, you need much higher doses for the same effect. Take vitamin C every
4-6 hours - possibly up to 10 grams or more a day. Children may prefer vitamin C powder mixed
in drinks. People with acid stomachs or ulcers should use calcium ascorbate or magnesium
ascorbate powder/capsules which is slightly alkaline.
Zinc citrate 50mgs - 4 daily
Vitamin A 20,000i.u. twice daily for 2 days. Vitamin A should not be given to women who could
possibly be pregnant and therefore there are no preparations of pure vitamin A on the market.
Use cod liver oil instead - one capsule contains 5,000-10,000i.u of vitamin A. For children,
reduce to 10,000i.u. twice daily.
Infections can also be helped by propolis 600mgs three times daily (dissolve in the mouth). Fresh
propolis is best from a bee keeper - it comes as a firm waxy lump - just break off a pea sized
lump and suck/chew.
One of my patients claims 1,000mcgms of selenium daily works wonders (10 drops of liquid
selenium from BioCare) - feedback please. The toxic dose is 3,000mcgms daily. All these
preparations are available from Lamberts tel 01892 552119 or BioCare 0121 433 3727. All my
patients qualify for trade prices.
Costs (Lamberts),
8134 Vitamin C 1 gram time release with bioflavonoids 180 @ £10.32
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8106 Vitamin C as calcium ascorbate powder 250gms @ £10.22
8283 Zinc citrate 50mgs 60@ £3.11
8005 Vitamin A 7,500i.u./D400i.u. 100 @£3.02
8519 Bee propolis 600mgs 90 @ £6.33
12960 Echinacea complex 60@ £7.52
Colds and 'flu. Lime blossom tea - several cups daily. Echinacea 200mgs - to be taken at the first
sign of a cold in small doses every 2-3 hours for the duration of the infection. Sage works as a
gargle for sore throats/tonsillitis (needs large doses eg 30 drops of the fluid extract in water, three
times daily), as does hydrogen peroxide (food grade 6% available from ECHO 01777 711737)
gargle 4 times daily. Try chamomile tea.
I believe all CFSs should take supplements and rest regularly in order to get well. As well as
these things, most CFSs should try an elimination diet, especially if they have symptoms such as
headache, irritable bowel syndrome, mood swings and/or depression/anxiety.
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MAGNESIUM
Treating Magnesium Deficiency
June 2000
Magnesium deficiency is the most difficult deficiency to correct. In evolutionary terms,
magnesium was abundant in the diet and therefore no good mechanisms to conserve magnesium
evolved. It appears to be poorly absorbed and easily excreted even by so called normal people
(and I don’t think there are many of those left!). It is necessary for the normal function of over
300 enzyme systems, for muscle relaxation, immune function, cardiac function, clotting, nerve
conduction etc. Indeed I cannot think of a bodily department in which magnesium is not
essential. It prevents heart disease, cancer, blood pressure, kidney stones and improves energy,
sleep etc.
I can guarantee to get magnesium levels up by using injections. One injection of 2mls of 50%
magnesium sulphate (1gm MgSO4, or 100mgs elemental Mg or 4 millimols) will usually keep
levels up for two weeks (however, some people need them more often). By the third week, levels
will usually have fallen again. For some people this is the only method that has worked, but it is
tedious to have to keep injecting. It astonishes me that so small a dose of magnesium works as
100mgs is only one third of the RDA (recommended daily allowance).
There are other interventions to improve magnesium levels and some work for some people. It is
impossible to predict which will work for everyone but all are worth trying.
Are you taking enough magnesium in the diet? The recommended daily allowance is 300mgs for
men, 350mgs for women. Magnesium is extremely safe by mouth – too much simply causes
diarrhoea. I have yet to see a red cell magnesium which is too high. However, it is theoretically
possible in people with kidney failure.
1. The richest source of magnesium in the diet is from chocolate (yippee, but care with the
sugar!), nuts, green vegetables, whole grains and seeds. Use a magnesium rich salt such as
Solo (I can provide). Use a bottled water rich in magnesium. Hard water also contains more
magnesium than soft water. Most processed foods are low in magnesium.
2. Can it be supplemented? Yes, of course. Too much magnesium can cause diarrhoea in which
case your magnesium levels will fall. I am cautious about using minerals in isolation, because
too much of one can induce deficiencies in others. So I start off with BioCare mineral
complex EAP 3 daily (each capsule contains 90mgs of magnesium). If this does not do the
trick, add in other magnesium salts such as Epsom salts (1/4 to ½ teaspoon daily – too much
gives diarrhoea), magnesium citrate, chelated magnesium, magnesium EAP.etc.
3. Try Epsom salts in the bath because minerals can be absorbed through the skin. I do not know
how much to use, but I suggest a handful or two.
4. Some patients respond to magnesium per rectum. If you want to try this, I can
supply.
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Is magnesium’s absorption blocked?
1. Calcium and magnesium compete for absorption and so too much calcium in the diet will
block magnesium absorption. Our physiological requirements for calcium to magnesium is
about 2:1. In dairy products the ratio is 10:1. So, consuming a lot of dairy products will
induce a magnesium deficiency.
2. Tea contains tannin which binds up and chelates all minerals including magnesium. If tea is
to be drunk, don’t have it with food. Incidentally, tea drinking is the commonest cause of iron
deficiency anaemia in UK for this same reason.
3. Vitamin D is necessary for the body to utilise magnesium. The major source of vitamin D are
dairy products (not too much!), sunshine on the skin (naked sunbathing please!) and seafoods
(lots please – at least 3 servings a week).
Are you a magnesium loser?
1. All diuretics will make you pee out magnesium. By this I do not just mean drugs, but also tea,
coffee and alcohol. Even some herbal teas are mildly diuretic.
2. Hyperventilation makes you pee out magnesium. This is because hyperventilation induces a
respiratory alkalosis, the body pees out bicarbonate to compensate, but each bicarbonate is
negatively charged and carries a positively charged cation with it – in this case magnesium.
3. Heavy exercise makes you pee out magnesium. This should not be a problem for CFS
patients but does explain why long distance runners may suddenly drop dead with heart
arrhythmias.
4. Magnesium is lost at times of stress. This also includes food allergy reactions and
detoxification.
Can you hang on to magnesium?
1. For magnesium to get into cells it requires thiamine (vitamin B1). Try thiamine 100mgs daily
– if you are already taking some in a multivitamin preparation, then top the B1 to 100mg a
day.
2. For magnesium to be retained inside cells you need good antioxidant status. Selenium is the
main mineral antioxidant. Each of the BioCare mineral complexes contains 100mcgms of
selenium, so 3 of these is a good daily dose. Food tables are unreliable because food content
is dependent on soil levels of selenium. Assuming good soil levels (which is a big
assumption!), foods rich in selenium include wholegrains, organ meats, butter, garlic and
onion. Seafoods are rich in selenium and obviously not dependent on soil levels!
3. Boron is necessary for normal calcium and magnesium metabolism. I also find boron very
useful for arthritis, perhaps because of its effect on calcium and magnesium. For arthritis you
need 9mgs a day for 3 months then reduce to a maintenance dose of 3-6mgs daily. I can
supply.
33
At present the only way I know how to ascertain whether or not magnesium levels are replete is
to measure a red cell magnesium. I can supply a kit if you can find someone to take blood. It
costs £16.
Magnesium by Injection
Parenteral magnesium is often used as part of the treatment of myalgic encephalitis (1). It can
have many effects but the main ones are to improve energy, muscle aches, cold hands and feet
and help hyperventilation. It seems to have a different effect from oral magnesium and, even in
the presence of a normal red cell magnesium, can bring benefits. However, it is usually given to
those patients who are deficient. A red cell magnesium is a reasonable test of levels. A serum
magnesium is an unhelpful test since the heart stops if these levels fall. Therefore serum
magnesium is maintained at the expense of body stores. Unfortunately most hospital laboratories
only measure serum levels - usually in intensive care medicine. A red cell magnesium can be
done at Biolab Medical Unit, 9 Weymouth Street, London W1N 3FF; 10ml blood in a lithium
heparin bottle, cost £16.
Evans magnesium sulphate is available on prescription. The usual regime is 1gm/2mls given i.m.
weekly for 10 weeks. About 70% of patients will see useful improvement. After this time about
50% of those who have improved will need a top-up dose every 1-4 weeks depending on clinical
response. 1gm of 50% contains 100mgs of elemental magnesium. Some of my patients have
received over 50 injections. Since the RDA (recommended daily allowance) for magnesium is
300mgs, it is almost impossible to overdose. A possible risk may be to a patient in advanced
renal failure, who cannot excrete magnesium and may already have high levels.
The injection is painful because one is injecting a concentrated solution. It is best given at room
temperature or blood heat, i.m., either into triceps or deltoid, slowly over 1-2 minutes. I usually
use an orange needle, at least 1” long to get deep into the muscle. Magnesium is a powerful
vasodilator. Even if one takes care to check the tip of the needle is not in a vein, sometimes there
is such a powerful local vasodilatation that the vessels open up and an i.v. injection is
inadvertently given. This does not matter much, except that the patient develops a generalised
vasodilatation, feels hot and alarmed, goes red and may faint (if upright).
In fact it is partly this effect which is taken advantage of in the treatment of acute myocardial
infarction or acute stroke. In both these conditions there is a local obstruction of blood supply. I
use i.v. magnesium (2-5mls of 50%) as a bolus to treat both these conditions - often with
dramatic effects. With acute MIs there is often immediate pain relief as either the obstruction is
relieved or good collateral circulation restored. Furthermore, magnesium is antiarrhythmic. Trials
with magnesium have clearly demonstrated benefit and magnesium is used as a front line drug in
many hospitals (2). In acute stroke, function can be restored within a few minutes - most
satisfying. However, if there is a possibility that the stroke is haemorrhagic (about 15% of cases)
then magnesium should not be used.
34
I have recently discovered that for magnesium to get into cells thiamine is required. Some
patients can correct levels by taking thiamine 100mgs daily. This can be prescribed, but is
available over the counter from BioCare and Lamberts.
35
Ref: 1. Lancet 337: 757-60 (1991).
2. Lancet 339, 1553-1558 (1992) "Intravenous magnesium sulphate is a simple, safe and
widely applicable treatment. Its efficacy in reducing early mortality of myocardial infarction is
comparable to, but independent of, that of thrombolytic or antiplatelet therapy". Woods KL,
Fletcher S, Roffe C, et al.
Magnesium Per Rectum
Giving magnesium by injection is the quickest way of restoring normal blood and tissue levels of
magnesium. However for some patients the injections, whilst giving benefit, are too painful to be
considered long term.
At a recent conference in Australia I spoke to a doctor who had been trying magnesium sulphate
given PR (per rectum - ie up the backside! Like a suppository) with some success. If this
technique works, then it would be a cheap, safe, do-it-yourself at home technique which could
replace uncomfortable injections. With this in mind Dr Keith Eaton made up some kits for my
patients (and his) to try. I have now tried magnesium PR with 10 patients and it has been as
effective as the injections in 6 of them (June 1996).
The kit is made up of a 50ml bottle of magnesium sulphate, a 10ml syringe and a small length of
soft plastic tubing. The syringe and tubing can be re-used so long as sensible hygienic
precautions are taken between doses.
The soft plastic tubing is meant to be cut into a short length, say 3" and pushed over the end of
the syringe to allow insertion into the back passage.
To load the syringe, simply push all the air out, dip the plastic tube into the magnesium, and draw
some magnesium sulphate back into the syringe. The exact amount is not important and I am
happy for patients to experiment with smaller or larger amounts, perhaps every two to three days,
according to their response. Some patients find it easier to hold the magnesium in by starting
with 1ml of the liquid and slowly increasing the dose, thus giving the back passage time to get
used to the experience! Some find it less irritating if they dilute the magnesium with plain water.
Indeed I recommend this is done routinely now.
If you can find somebody to insert the tube tip into your bottom, then this makes life easier! (It
may need greasing with a little oil, margarine or soap). However it is perfectly possible to do it
yourself. Once the tube is in position, slowly push in the plunger of the syringe and the contents
will pass into the rectum. Don't then dash off to the loo or it will all be lost!
If the magnesium is being absorbed then I would expect patients to get the same response as from
a magnesium injection, but of course without the pain. It does work for a useful proportion of
CFSs so well worth trying if you get benefit from the magnesium injections.
The cost of 50mls (equivalent to 25 x 2ml doses) is £12.
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Magnesium by Mouth
Magnesium is poorly absorbed by mouth. That is why I start off with injections. By injecting
magnesium I can guarantee 100% to bring the levels up. I cannot guarantee to do this with either
PR or oral magnesium. However if the injections do help then it is well worth trying oral or PR if
only to reduce the pain and trouble of injections!
All magnesium salts can cause diarrhoea if too much are taken. The cheapest source of
magnesium is Epsom salts. The key is to take “sub-diarrhoeal” doses. I suggest ¼ teaspoon daily,
building up slowly until you get “the trots”, then reduce just enough to give a normal bowel
movement. It does taste awful – try with fruit juice.
If you can afford it then it is best to increase the mineral complex EAP to three daily – not only
does this give a good dose of magnesium but also a good dose of the other trace minerals.
Pain killers
The obvious approach is to work out the cause of the pain and tackle this. Pain can be caused by
many things such as allergy, but it may take time to work out the cause of the pain, or it may not
be possible to work out the cause, or the cause may be impossible to treat.
The main 'pain' I see in CFS sufferers is muscle pain. In my experience, this is often caused by
chronic muscle tension which may be a magnesium problem (see magnesium sheet). Another
problem is that CFSs have a low pain threshold - this is thought to be partly due to the
disturbance in the basal ganglia of the brain which occurs in these patients, or possibly
congeners.
However pain killers are often required. There are two main groups - the pure pain killers such as
paracetamol, dextropropoxyphene and codeine (co- proxamol is a mixture of paracetamol and
dextropropoxyphene, co-dydramol is a mixture of paracetamol and codeine), and drugs with pain
killing and anti- inflammatory actions such as aspirin, ibuprofen (Nurofen), naproxen,
indomethacin and so on.
The groups can be combined for better results. For example for a persistent pain, one could use
ibuprofen 400mgs three times daily with co-proxamol 2 tabs when necessary as well as.
The pure pain killers only last about 4 hours, and therefore may be no good for night or early
morning pain.
The aspirin like drugs (called NSAIs) have longer duration of action and several are available as
slow release preparations. Different people respond to different NSAIs so there are no firm rules.
Ibuprofen 400-600mgs lasts 6 hours but is the cheapest. Naproxen 500mgs lasts 12 hours.
For pain which is 'neuralgic'. ie shooting, the antidepressants can sometimes be helpful. Most
CFSs react to normal doses and so it is important to try low doses - initially say amitryptiline
37
10mgs (or dothiepin) at night building up slowly acording to response. Neuralgic pain sometimes
responds to anti- epileptic drugs such as carbamazepine up to 200mgs three times daily.
Do you get pain at night? If so is the bed comfortable? A hard bed is not necessarily a good bed.
Try sleeping on several duvets. Some of my patients have benefited from a mattress which
moulds to their shape namely a Tempur tel 0800 616 135.
Rocking Chairs - use of a rocking chair produces endorphins - natural pain relieving substances
as well as stimulating blood flow. Book one for Christmas!
Maximum doses and Costs
Paracetamol 500mgs - 2 500mgs qds OTC, inexpensive.
Aspirin 300mgs, 2 tabs qds, OTC, inexpensive, very effective, but can cause
indigestion and acidity - in which case avoid this.
Prescription Only
Co-proxamol, 2 tabs qds, 100 @ £2.00
Ibuprofen (OTC Nurofen) 400mgs tds, 100 @ £2.50
Amitriptyline 10mgs 100 @ £1.50
Dothiepin 25mgs 100 @ £9.00
A dispensing charge of £5.00 per order is made when I supply the drugs. OTC = over the counter,
qds = four times daily, tds = three time daily, bd = twice daily .
Congeners
Many of my CFS/ME patients find themselves sensitive to pain, light, noise, temperature and
smells. All these sensations are subjective - that is to say the degree of pain (or whatever) cannot
be measured, it is just how they are felt by the body. This suggests to me that there is some
biochemical defect which sensitises CFS/ME sufferers to stimulation from the outside world.
The chemical culprits which do this probably come from inflammation. In it's response to injury
(a sort of stress), the body produces inflammation. For example if you are burnt, infected or
bruised, the body responds with the same response namely inflammation. It also responds with
inflammation to allergy. It may be that this is how allergic reactions can be so diverse - by
sensitising the body to sensations it would normally ignore.
The body is constantly bombarded by sensations - the vast majority it ignores. It is only those
which are either potentially dangerous or of interest which are allowed to get through. This
"gating" system is important - the brain would quickly overload if it had to process every bit of
information coming into it.
It is now known that hangovers are caused by breakdown products of drink called congeners
notably found in brandy, cheap rum and red wine. Anybody drinking enough of these will
sensitise so much that pulsations of blood to the head (which the body would normally ignore)
38
would be perceived as a throbbing headache. People with hangovers will also tell you that the
slightest movement of their head causes headache and dizziness, they dislike bright lights, noises
are painful to them and their body aches. Indeed the symptoms are very like those of CFS/ME.
This may partly account for why most CFS/ME patients cannot drink at all - they have enough of
their own congeners without wanting any more.
Ref: Nature, Dec 1996, Andrew Strassman, Beth Israel Deaconess Medical Centre, Boston.
ANTIDEPRESSANTS IN CFS
This group of drugs are thought to work by increasing the levels of neurotransmitters in the brain.
They do so by slowing the rate at which the transmitters are broken down in the brain. I often
find low doses of anticholinergics such as amitryptiline or dothiepin helpful. The dose is too low
to have an effect on mood so I am not using them for their antidepressant effects.
I quite commonly recommend one of the sedating antidepressants to take at night. (These can
also be helpful if hyperventilation is a problem). The key to using antidepressants is to start with
small doses. CFSs seem to react to higher doses. This may be because their liver enzymes do not
seem to clear drugs from the blood stream as they should (incidentally this may be partly why
CFSs don't tolerate alcohol) or it may be there is a hypersensitivity in the brain. The most
sedating anti-depressant is trimipramine (Surmontil), dose range 10-75mgs, 84 x 10mgs cost
£15.00.
The most commonly used in general practice are amitriptyline (Tryptizol) 10-75mgs nocte, 10mg
or 25mg x 100 tablets cost £1.50 and dothiepin (Prothiaden) 25-75mgs nocte, 25mgs x 100
tablets cost £9.00.
I have not been impressed by the 5HT reuptake inhibitors like fluoxetine (Prozac) or sertraline
(Lustral). They are non-sedating and possibly mildly stimulant - therefore not indicated in CFSs
(they increase the desire, add nothing to the performance thereby increasing the frustration and
rage). There is no doubt they are effective in treating depression and if this is a big problem I
sometimes combine them with one of the above antidepressants. Again, they need to be started in
very small doses. The list of side-effects in BNF also distresses me.
St John's Wort (hypericum perforatum) has proven antidepressant properties and well worth
trying (see SLEEP AND SLEEPING DRUGS). However I have had two patients who have been
made much worse when they took the full dose, so be careful – start on 300mgs daily and build
up slowly to 900mgs daily.
B12 INJECTIONS
Experience suggests that over 50% of CFS patients respond favourably to B12 by injection
starting with 2mgs per week. Typically patients feel an increase in well-being within 12 hours
which may be sustained for 2-7 days. However some patients see gradual improvement over the
course. B12 can be self-administered daily (like an insulin dependant diabetic does). Rarely
39
patients get an acne like rash and the dose has to be reduced. If the response fails, then taking a
"drug holiday" for a few weeks often restores the good response.
40
There are many possible reasons why B12 may help:
1. B12 helps with chemical detoxification in the liver. Not just foreign chemicals, but chemicals
that are produced as a result of normal metabolism.
2. CFS is characterised by high levels of cytokines. Cytokines are literally "cell killers" released
by a rotten immune system which doesn't know what it's doing. Cytokines are known to block
vitamin pathways and high doses of vitamins (including B12) may be required to overcome this
and restore normal function. Indeed I have several patients who respond to high dose B vitamins
(some take up to 300mgs daily, although I do not recommend using these high levels long term
since B6 has been associated with nerve damage albeit at much higher doses).
3. A study showed that CFS patients have undetectable levels of B12 in their cerebrospinal fluid
(irritatingly I read this study and then lost the reference – can anybody send it to me?).
4. B12 increases the oxygen carrying capacity of the blood.
There is an article at the back of this handout by Paul Cheney about his experience of using B12.
I routinely ask GPs to give B12. Many are unhappy because they are unfamiliar with using B12
except to treat pernicious anaemia whereby only tiny doses are required. B12 is wonderful to use
because it is so safe, many of my patients inject themselves and know exactly when they need
another dose. It has been used to treat psychiatric disorders and dementias because of its
beneficial effects on the brain.
There are two reprints at the end of the book – one from Paul Cheney and one a paper from the
Journal of Environmental and Nutritional Medicine about B12.
FOOD ALLERGIES
Fatigue is often caused by an intolerance of grains and all CFSs should try a grain free diet at
some stage. By grain free I mean no corn, wheat, barley, rye or oat. Rice is allowed. However any
food allergy can cause a fatigue, not just grains.
An elimination diet is hard work. One of the interesting aspects of food intolerance is that people
tend to get 'hooked' on the foods that are making them ill, just like drug addiction. The
commonest addictions are sugar, caffeine, tea, coffee, chocolate, alcohol and tobacco. However I
often see cheese addicts, people hooked on dairy products, bread, biscuit and cake addicts! Some
people are what I call "natural addicts". They tend to move from one addiction to another. I see a
high proportion of athletes in my CFSs - I suspect they get "high" on intensive physical exertion.
Often I can guess the offending foods from a good dietary history combined with the
characteristic history. For example a history of recurrent sinusitis, catarrh, sore throats, tonsillitis
and swollen glands is often caused by intolerance of dairy products. I once had a patient who told
me that when he died he would like to take a cow with him to heaven to ensure a regular supply
of dairy products!
Most patients with a history of allergy (asthma, eczema, migraine, irritable bowel) or a strong
family history do this diet at some stage. The foods on the elemental diet are "best guess" foods.
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It is possible to be allergic to anything under the sun, including the sun - so changes may have to
be made, as discoveries are made, for this diet to be successful.
THE ELEMENTAL DIET
This diet may make people worse initially - this can be a good sign. Only eat
foods listed - all others should be avoided.
Allowed Foods
Any meats - chose from lamb, chicken, pork, turkey, duck, 'game' meats such as venison,
pheasant, goose etc.
Any fish - salmon, mackerel, cod, haddock (care with smoked fish which often contains dyes).
Tinned fish in brine or olive oil is fine.
Rice and potato - these are going to be the main 'fillers'. Use rice cakes for breakfast, or puffed
rice from health food shops.
Millet, buckwheat, sago, quinoa.
Any vegetables.
All salads - lettuce, tomato, cucumber, celery, peppers, onion etc
Any fruit (except citrus, ie no orange, no lemon, no grapefruit) - apple, pear, banana, avocado etc
Dried fruit - sultana, apricot, prune, raisin, fig date etc
Nuts - peanut, brazil, hazel, walnut etc
Seeds - sunflower, poppy, sesame
Pulses - lentil, butter beans, chick peas, flagolets etc
Nut butter spreads, tahini (sesame seed spread).
Allowed Drinks
Bottled or filtered water
Herbal tea - eg redbush ("rooibosch, 11 0'clock tea), rosehip tea.
Grape juice, pineapple juice, apple juice, tomato juice - best drunk diluted.
Soya milk. "Rice Dream" is a delicious milk alternative.
Snacks
Walkers plain crisps
Mixture of nuts, seeds, dried fruit,
Salted or fresh peanuts.
Salted olives
Extras
Herbs, Honey, Salt
Sunflower and olive oil
Soya milk, soya margarine
Spices: chilli, cumin, ginger, coriander, pepper, cloves etc
Arrowroot flour - for thickening gravies
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This diet has been criticised because it contains soya and many people react to this. There are no
hard and fast rules.
Avoid any of the above that you know upset you. If in doubt, don't have it.
Most foods from packets and tins will have hidden additives, so avoid these. ALL OTHER
FOODS ARE FORBIDDEN - this means no tap water, tea, coffee, chocolate, alcohol, wheat
(bread, biscuit, cake, pasta, pastry), rye (ryvita), oats, corn, dairy products (milk, butter, cheese,
yoghurt, dried milk), egg, citrus fruits (orange, lemon, grapefruit) and sugar. Avoid sausage, pate,
ham, bacon, and prepared foods all of which contain additives.
Plan the diet so you won't be hungry (this is not a slimming diet although people often lose
weight as they lose retained fluids). Choose a time free from social commitments - this diet
should be done for one month.
If you do have food allergies, you may get worse before improving. This usually lasts up to 4
days. It may be that you discover that there are food on the diet that you are reacting to - if so
avoid these as well. This diet is a 'best guess' based on foods which rarely cause problems, but it
is possible to be sensitive to many foods such as rice or potato.
Meal Suggestions
Breakfast: muesli made from rice flakes, millet flakes, nuts, seeds, dried fruit, fresh fruit etc
(some health food shops do "gluten free"muesli with the above ingredients). Use soya milk,
"Rice Dream" or fruit juice to wet the dry cereal. Puffed rice or rice cakes with soya margarine,
nut butter. Buckwheat flakes.
Lunch: cold meat, fish (tinned fish in olive oil is fine), salad (lettuce, cucumber, tomato, celery,
peppers etc), baked potato with soya margarine, rice salad (with nuts, seeds, sultanas fish etc),
home-made soup.
Supper: meat or fish, potato or rice, any vegetable. Fruit, soya yoghurt.
Suggestion: Make a double helping at supper time, put the extra helping in the fridge, and use
this for lunch the next day.
How To Reintroduce Foods
If after one month you are no better, return to your normal diet, but omit grains for a further two
weeks. This is because some of my CFSs take five weeks before they start to respond to a grain
free diet.
If you have improved, then the idea is to bring foods back into the diet one at a time to see what
you are reacting to. Some foods usually give immediate reactions (within a few minutes to a few
hours) so do these first - up to three a day. Dairy products and grains often give delayed
reactions, so test these last, over three days. These new foods can be added to your 'normal'
meals. For example:
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Day 1 - tap water, black tea, a new meat or fish
Day 2 - coffee (black), grapefruit, sugar (for example two teaspoonfuls added
to fruit)
Day 3 - orange, chocolate (plain, eg Bournvilles), egg (one not included in
diet)
Day 4 - lemon (in tea perhaps), butter (in mashed/jacket potato), plain yoghurt
Day 5 - fresh milk, cottage cheese, cheddar cheese
Day 6 - porridge oats, oat cakes, ryvita
Day 7 - corn flakes, popcorn, sweetcorn (tinned or frozen),
Day 8 - shredded wheat, plain 'water' biscuit, pasta
Day 9 - bread (yippee! - this also tests yeast), digestive biscuit, cake
Day 10 - alcohol etc etc
Some people are 'lucky' and get clear reactions such as sore mouth, indigestion, headache,
fatigue, "brain fag", palpitations, runny nose etc. Sometimes they also find their pulse changes - a
change of 10 beats per minute is significant. However many don't see clear improvement and
often a diary can be helpful to detect late reactions or changes in the long term.
Recommended reading:
"The Complete Guide to Food Allergy and Intolerance" - Brostoff and Gamlin, £9.99 "Not All In
The Mind" - Richard Mackarness
"The Food Intolerance Diet Book" - Workman, Hunter and Alun Jones.
GUT DYSBIOSIS
If a patient fails to respond to an elimination diet, this is either because he/she is not food
intolerant, or he is still reacting to something in the elemental diet, or because he has gut
fermentation. This used to be called "candida". Since there is little hard scientific evidence that
candida is the cause of this problem, the name has been changed to dysfunctional gut syndrome
(or gut fermentation which is what it is). The joy of gut fermentation as far as doctors are
concerned is that we have a test for it. Having said that, the test is not totally reliable and some
patients still respond to antifungals despite a negative test. Biolab are in the throes of developing
a new test for “candida” said to be specific for this problem and are currently testing it in their
patients.
I used to give patients very restricted diets (such as lamb, pears and rice) to sort out their
allergies. I no longer do this for two reasons. Firstly I found a few patients got stuck on a very
restricted diet and were unable to expand it. Secondly I now have a technique called EPD
(enzyme potentiated desensitisation) which turns off food allergies without one having to know
what those allergies are. It can do this because all the different food antigens are represented in
the vaccine. I use EPD if I am convinced that a patient has food allergies but is not responding to
the diet.
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Foods free from dairy/grains etc can be obtained from "Ultra Farm”, Centenary Business Park,
Henley on Thames, Oxon RG9 1DS, Tel 01491 578 016 for a catalogue. Do not be put off by the
continuous tone – keep trying and you will be connected.
Tests of Gut Fermentation
(Revised February 2000)
The gut is not sterile but full of bacteria, especially the colon. The stomach is supposed to be
sterile and it is kept this way by dint of producing acid. However some acid resistant bacteria can
survive there, namely helicobacter pylori which can cause ulcers. Eradication of H pylori can
cure ulcer disease.
The duodenum, jejunum and small intestine is supposed to be sterile, but it is believed that the
jejunum is where yeasts may flourish to cause so called “candida”. The upper gut is also where
parasites may lurk. Conversely the lower bowel, large intestine or colon, is full of bacteria which
have many beneficial functions. Taking antibiotics upsets this natural balance and can cause
serious “super-infection” with other pathogenic bacteria (pseudomembranous colitis). However
often the changes are subtle and go unnoticed except for the development of an “irritable bowel
syndrome”.
In an ideal world, it would be possible to take specimens from all parts of the gut and do precise
counts of micro-organisms. In practice this is too expensive and uncomfortable.
The next best thing, however, to find which organisms are present is by measuring their
particular products of metabolism. To this end Biolab have developed a gut fermentation test.
Test for Gut Fermentation Products. Cost £52.00
You should fast for 3 hours before taking the glucose – you need to swallow the two glucose
capsules with a glass of water in which you have dissolved the glucose powder. The most
convenient time for most patients to do this test is first thing in the morning before breakfast. The
blood should be taken one hour after the glucose load (you have to make arrangements with your
doctor/nurse in advance if using their services for blood taking). The blood is put into a fluoride
oxalate bottle (provided) and sent off to Biolab. The following measurements are made:
Ethyl alcohol
Acetate
Propionate
Butyrate
2,3-Butylene Glycol
Succinate
Butanol
if any at all, suggests yeast overgrowth of the gut
if raised, suggests bacterial fermentation due to
excess carbohydrate reaching the colon
if raised, suggests bacterial fermentation due to excess fibre
reaching the colon
Excess carbohydrate or fibre reaching the colon suggests either intestinal hurry or failure to break
down carbohydrates due to inadequate enzyme production by the pancreas. An example of this in
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practice is having baked beans for supper. Beans are poorly digested, get to the large bowel
where they are fermented by grateful bacteria generating large amounts of wind!
Comment
I don’t do this test very often. I suspect “candida” problems on the basis of a history and response
to antifungals. I might do the test in order to help persuade a GP to prescribe antifungals because
they are expensive. It can be a helpful test if the patient has a lot of wind to determine whether
antifungals should be used or pancreatic enzymes, FOS, probiotics etc.
Management of a Positive Gut Fermentation Test (Raised Ethanol)
Glucose may be fermented by micro-organisms to many different alcohols. There are very few
organisms which ferment to ethanol (ethyl alcohol), namely ruminococcus hominis, enterobacter,
aeromonas, clostridia, neiseria, candida and other yeasts. The aforementioned bacteria are
uncommon inhabitants of the human GI tract and so for practical purposes a positive gut
fermentation suggests an overgrowth of yeasts.
Yeasts are normally present in the large bowel (about a pea sized volume). The upper gut should
be sterile (by dint of gastric acidity) and the gut fermentation test reflects fermentation in the
upper gut. (There are other tests which reflect lower gut fermentation).
Implications of a Positive Gut Fermentation
In a study of 30 subjects with a positive tests 19/30 had 4/5 abnormalities of zinc, magnesium,
thiamine, riboflavin and pyridoxine metabolism. All had at least one abnormality. This may be
due to malabsorption.
In a further study of positive fermenters, 27/64 corrected on diet alone, 116/149 corrected on diet
and antifungals but only 2/28 corrected on diet and broad spectrum antibiotics.
Management of Positive Fermenters
1. Correct nutritional imbalances which are likely to be present (see above). Avoid antibiotics,
which destroy the "friendly" organisms.
2. Correct underlying problems. The upper gut should be sterile. One cause of non-sterility may
be hypochlorhydria. Pancreatic enzyme deficiency (this can be measured at Biolab, special
appointment required for a gastrogram Tel. 0171 636 5959, cost £30) can cause diarrhoea.
3. Attention to diet - yeasts survive best on simple sugars. Thus the carbohydrate content of the
diet should be free of these (with emphasis on complex, unprocessed carbohydrates). Some
patients are allergic to yeasts, in which case these should also be avoided.
4. Consider a mild antifungal - see notes - ANTIFUNGALS FROM BIOCARE
5. Consider probiotics to recolonise the bowel with "friendly" lactobacilli (from BioCare, BioAcidophillus 1 capsule twice daily, tel 0121 433 3727; Dr. Myhill's patients qualify for trade
prices). BioCare have recently developed a new product called Replete - a 7 day course of high
dose probiotics (cost £20.07).
6. Some people will need an antifungals, such as nystatin, which is only available on
prescription.
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7. A few people need systematic antifungals such as ketoconazole (Nizoral - monitor LFTs
monthly), itraconazole (Sporanox - beware teratogenic) or fluconazole (Diflucan).
47
The Anti-Candida Diet
This is described in Erica White's "Beat Candida Cookbook" available from White's Food
Supplement Supplies, 22 Leigh Hall Road, Leigh on Sea, Essex SS9 1RN tel 01702 72085. This
book is full of recipes and good ideas. Erica suggests a four point attack on diet (low sugar, yeast
free), probiotics, nutritional supplements and anti-fungals. By low sugar she means no sugar in
any shape or form including fruit and milk sugar (lactose). It also means no quickly digested
carbohydrate such as finely divided flours (e.g. white flour, white rice, cornflakes, most breakfast
cereals, custard powder, malted drinks) and crisps. However I am not too keen on very low sugar
diets. I have seen too many CFS patients worsen when all sugar is ruthlessly removed from their
diet. I suspect that they are poor at keeping blood sugar levels up (possibly reflecting poor
adrenal function). Therefore I suggest small amounts of sweetness in fruit or dried fruit taken
regularly through the day as chronic hypoglycaemia can cause physical and mental fatigue.
Duration Of Treatment
Practical experience suggests that treatment has to be long term. The single most important
therapeutic intervention is diet. Physicians are used to treating infections with short courses of
antimicrobials but if the same principles are applied to positive fermenters, poor results should
be expected. Antifungals are usually given for not less than six months and often up to eighteen
months, until a good diet has been established. However often patients need an extra course if
they have lapsed on the diet. I prefer to use the gentle herbal preparations in the long term.
"Gentle" does not mean mild, it means they take longer to work, are less toxic and are virtually
free from side effects. I like using these preparations because it means I can't do harm!
Finally there is a strong association between positive gut fermentation/food intolerance and
thyroid disorders. An inactive thyroid (hypothyroidism - i.e. too little thyroxine) is a difficult
diagnosis because it develops slowly without one being aware of it. A simple blood test will
diagnose it. Having said that, some of my CFSs respond well to thyroid supplements even in the
presence of normal thyroid function.
Nystatin
Nystatin is often prescribed to people with a positive gut fermentation test. It can either be given
in tablet form (500,000 i.u. per tablet, usual dose 4 tablets daily) or as the pure powder (available
from Squibb via Becpharm, 7 Spire Green Centre, Flax Meadow, Harlow, Essex CM19 5TR, tel
01279 434567), which means that high doses can be given cheaply. Give the chemist this address
as he may not know where to order it from. If you have difficulty, it can be ordered through Mr.
Andrew Winson, Dispensing Chemist, 130 Forest Road, Annesley Woodhouse, Notts, tel. 01623
751410, (cost £10 per 25 grams – you need a prescription). The powder should be kept in the
fridge. Nystatin should be taken on an empty stomach, away from other drugs, vitamins and
minerals as it is a chelating agent and blocks their absorption.
Nystatin tablets: the usual dose is 2 tablets taken twice daily. The tablets have a brown sugar
coating to which some people react. In this event the sugar can be easily washed off with water
before swallowing.
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Nystatin powder: Start off with 1/4 teaspoon daily. Shake this up with a little water and take one
third, three times daily. Increase to 1/2 tspn after 4 days, 3/4 tspn on day 8, then to a full tspn on
day 12. Nystatin often makes symptoms worse at first - this is thought to be due to increased
yeast antigen as the cells are killed. Nystatin is not absorbed into the blood stream so this makes
it very safe. There are no serious side effects.
Nystatin is bitter and unpleasant to take and this makes people feel nauseous. If this is a problem,
BioCare can supply empty capsules which you can fill yourself.
Nystatin needs to be taken long term - usually at least 6 months. It is well worth rechecking the
gut fermentation test during treatment to see if the nystatin is having the desired effect. Nystatin
is just part of treatment. It is also important to stick to a diet low in "fast" carbohydrates (such as
sugar, honey, syrup) because these encourage proliferation of yeasts.
Recommended reading: "Candida Albicans" Gill Jacobs
"The Practical Guide to Candida" Jane McWhirter, £7.50 plus £1.25 p@p from Action for ME.
Other Treatments For Gut Dysbiosis
For gut infestations, there are two ways to go about tackling these - either one can use
antibiotic/antifungal drugs or herbal preparations to reduce bugs directly, or one can can use
probiotics and their food substrates to increase numbers of the beneficial bugs and physically
displace the "bad" bugs. Usually a combination of the two is required. With a patient with CFS
the immune system is malfunctioning and treatment simply with antibiotics/antifungals alone
often results in temporary improvement followed by worsening. Therefore I like patients to use
probiotics with fructo-oligosaccharides to recolonise the gut after a course of antibiotics.
The antifungals that I use most frequently are:
Mycopril. This is a fatty acid derived from coconut and comes in 250mg, 400mgs and 680mg
capsules. Start with the 400mgs one daily and build up to one capsule three times daily. If
tolerated go to 680mgs three times daily..
Biocidin (75mgs) and Biocidin Forte (150mgs). This is a grapefruit seed extract, not absorbed
systemically, anti-fungal (broad range), antibacterial (broad range including campylobacter jejuni
and helicobacter pylori). Biocidin also kills the "good" bugs such as lactobacillus acidophillus
and therefore pro-biotics (Bio-acidophillus or Replete) should be taken after a course.
Eradicin Forte - contains artemesia annua 300mgs, biocidin 75mgs, berberis 100mgs. Artemesia
(a chinese herb) is recommended by the WHO for the treatment of chloroquine resisitant malaria.
It is effective against giardia, amoebiasis and blastocystis hominis. Berberis (used by the Chinese
for 3,000 years) is active against many bacteria, fungi, protozoa, blastocystis, worms and viruses.
This may have some systemic activity.
Garlicin – 400mgs freeze dried, low odour garlic - use with above preparations to enhance their
effect. Absorbed systemically.
Oregano complex (used to be called candicidin) - a new preparation, broad spectrum, systemic
effects. Contains oils of oregano, clove, artemesia, ginger, borage seed and lauric acid. Not to be
used in pregnancy. The usual dose is one capsule twice daily.
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Candistatin - Pau D'Arco, garlic, berberis, hydrastis canadensis, silymarin plus some enzymes.
Caprycillin - caprylic acid encourages growth of "good" bugs. Not systemic.
Fructo-oligosaccharides (FOS). This is a natural food which tastes sweet (like candy floss) but is
not a sugar that yeasts can ferment. This is a soluble fibre, is not absorbed but pass into the large
bowel where the "good" bugs ferment them. FOS is mildly laxative, initially causes wind, feeds
up the "good" bugs and thereby displaces the "bad" bugs. It can be used to sweeten foods for
patients on an "anti-candida" diet.
Probiotics - Replete or Bio-Acidophillus.
Costs: of one month's supply: (Please check current trade prices with BioCare tel 0121 433 3727)
163 Mycopril 250 60 @ £7.33
117 Mycopril 400 100 @ £10.22
164 Mycopryl 680 90 @ £11.82
262 Biocidin 75mgs t.d.s 90 @ £4.38
263 Biocidin Forte 150mgs t.d.s 90 @ £6.66
t.d.s means one capsule
264 Eradicin Forte t.d.s 90 @ £9.21
taken three times daily.
205 Garlicin t.d.s 90 caps @ £5.69
520 Candicidin one twice daily 60 @ £10.68
291 FOS - one tablespoonful daily 250gms @ £3.47
168 Bio-Acidophillus - one capsule twice daily 60 @ £10.22
305 Replete - 7 day high dose probiotics 7 sachets of 20gms @ £20.07
The Specific Carbohydrate Diet
This is the diet I use if there is evidence or suspicion of bacterial fermentation in the gut.
It used to be thought that digestion of foods was entirely done by enzymes produced by the
stomach and pancreas. Now it seems that most of the digestion is done here, but the last little bit
of carbohydrate/sugar digestion is done by enzymes produced by the lining of the small intestine
(the brush border), where the absorption of foods take place. Starch is broken into disaccharides
each of which has a specific enzyme on the brush border to split it namely the disaccharides:
maltose (maltase), isomaltose (isomaltase), sucrose (sucrase) and lactose (lactase). The
monosaccharides produced are glucose, fructose and galactose.
Monosaccharides are the only way in which carbohydrate can be absorbed. If these
monosaccharides are stuck together in pairs, so-called disaccharides, such as sucrose, they cannot
be absorbed. Neither can polysaccharides (a long chain of monosaccharides stuck together) such
as starch. These poly and disaccharides are dependant on enzymes on the brush border for their
final digestion and absorption.
If there are no enzymes to digest them, there is no absorption and instead these di and
polysaccharides become available for fermentation by micro-organisms in the gut. Fermentation
produces toxins as well as symptoms of wind, gas, bloating and gurgling.
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The best example of this problem is lactose intolerance - inability to digest lactose (milk sugar)
which can cause bloating, pain and diarrhoea. Often a temporary lactose intolerance arises
following gastroenteritis. Other known diseases associated with enzyme deficiencies are coeliac
disease, tropical sprue, cystic fibrosis, Crohn's, ulcerative colitis etc. It may be that many "food
allergies" are actually enzyme deficiencies. Many symptoms can arise as a result of inadequate
digestion of carbohydrates such as constipation, diarrhoea, mucous production, abdominal pain
and failure to thrive.
The SPECIFIC CARBOHYDRATE DIET only allows carbohydrates to be consumed as
monosaccharides. These need no digestion and are completely absorbed, so none remain for
bacterial fermentation. All other carbohydrates requiring some digestion is not permitted.
ALLOWED: fresh or frozen meat and fish, eggs, natural yoghurt, most cheeses (NOT cottage,
cream cheese, feta, mozzarella, ricotta, processed).
Fresh or frozen vegetables (check for added sugar) except those listed below
Fresh and dried fruits (contain fructose), honey, saccharine.
Nuts (not with roasted coating), nut flours
Cooking oils, tea, coffee, mayonnaise
Salad, pickles, olives, mustard, vinegar, dry wine, gin, whiskey, vodka
NOT ALLOWED: All grains: wheat, barley, rye, oats, corn, rice, millet, buckwheat, bulgar,
spelt. No cereals, bread or flour made from these. No grain substitutes such as amaranth or
quinoa. No potato, yams, parsnip, sweetcorn.
No chickpeas, bean sprouts, soyabeans, mung beans.
No processed meats (contain rusk, starch, lactose and sucrose)
No sugar (cane, granulated, castor, icing, treacle, molasses, fructooligosaccharides etc
No soya milk, beer. Many sugars sold as fructose and glucose are not pure and have other sugars
added.
Rec Reading: Breaking the Vicious Cycle- Elaine Gottschall ISBN 0-9692768-1-8
From SPNT, PO Box 47 Heathfield E. Sussex TN21 8ZX 01435 867007
In practice what actually happens is that patients have a combination of the above problems and
most people work out a diet that suits them, based on the above principles. What works for one
may not for another! Tests can be helpful when things get complicated!
Chronic Undiagnosed Infections
In my experience chronic undiagnosed infections seem to upset or irritate the immune system
when it fails to deal with them adequately. This may be part of the cause of CFS. The commonest
offenders I see are yeasts (as in the dysfunctional gut syndrome, discoloration and lifting of the
nail), bacterial overgrowth in the gut, helicobacter pylori causing chronic indigestion or acidity,
pelvic inflammatory disease, especially chlamydia (low grade womb infections or prostatitis in
men - 10% of the adult population are infected) and chronic gut parasites. Fortunately we can test
for all of these things.
51
Yeasts - see above - gut fermentation test.
Bacterial overgrowth- see above
Nail infections - the local hospital can do nail clippings.
Helicobacter pylori - a blood test for helicobacter antibodies is now available at most district
general hospitals so your GP should be able to do this. Otherwise they can be done privately by
Parascope, cost £25.
Pelvic inflammatory disease and prostatitis. The best screening service for these is offered by the
London Clinic. Patients need to be referred by their GPs (or me) to Dr Gaya, Department of
Pathology, The London Clinic, 20 Devonshire Place, London W1, tel 0171 935 4444, extension
3156. I can do ELIZA antibodies for chlamydia cost £27 bloods sent to the London Clinic.
Parasites - Richard Lacey (of BSE fame!) has set up a laboratory in Leeds to look for chronic gut
parasites. The regular offenders are blastocystis hominis, helicobacter pylori (blood test), giardia,
amoebiasis and cryptosporidia. These are detected by sending off stool specimens, sometimes
with a rectal swab. The kits to do this comes from me, the full testing costs £80. The laboratory is
called Parascope, Dept of Microbiology, Chapel Allerton Hospital, Chapeltown Road, Leeds,
LS7 4SA, tel 01532 924657.
Gulf War Syndrome has more than one cause including mycoplasma incognito. This is a germ
used in biological warfare that was dumped on top of British and American soldiers. It can be
eradicated with doxycycline.
Borrelia burgdorferi is a spirochete which causes Lyme's disease. However there is some
suggestion that it can be transmitted by mosquitoes. Dr Vesselinova from the Lister hospital tells
me she has seen several patients with CFS following mosquito bites who did well on
doxycycline.
Osteitis. This occurs in the roots of teeth which have been root filled. It can be identified only by
X-rays and she suggests an X-ray which "pans" around all the teeth so all the roots can be seen.
The diagnosis is often overlooked but one is looking for an area of bone thinning (or rarefaction)
round the root. This is a patch of osteitis. The tooth has to be removed, the grey jelly like
substance at the base of it scooped out, irrigated with antiseptic, and allowed to heal up from
below. Many patients feel improvement following this procedure. For further information contact
a "Mercury Free Dentist", Mrs SA Andrews, Radcliffe on Trent 0114 933 3181, David Harvie
Austin 30 Weymouth St London 0171 637 2732, John Rees 1 Milton Court, Ravenshead 01623
792 186, Jennifer Wilmhurst Smith, 21 The Southend, Ledbury, 01531 632 839.
However positive results do not mean a cure is round the corner. The problem with CFS is that
the immune system is not working properly. This may be why the infection was picked up in the
first place. Any antifungals and antibiotics to treat these conditions only give a percentage kill. It
is up to the immune system to kill off the remaining bugs. The problem is if the immune system
can not do this, then the infection recurs. This means patients often require long courses of
52
antibiotics and/or antifungals which have side effects. This is why I quite often use herbal
preparations. I do not pretend to be very skilful with these. It may well be that the reason Chinese
medicine and herbs are successful in CFS is partly because they are killing gut parasites.
Many of the soldiers who come back from the Gulf War with Gulf War Syndrome are suffering,
amongst other things, from a chronic infection called mycoplasma incognito. This was developed
as part of germ warfare and many thousands of the veterans are infected. Treatment is with high
dose doxycycline 200mgs daily for 6 weeks with further cycles given subsequently. The
symptoms of Gulf War Syndrome are identical to those of CFS. Recently the Ministry of Defence
has admitted that Gulf War Syndrome can be caused by organophosphate poisoning. This is not
at all surprising to me because the clinical features of GWS are identical to my sheep dip flu
farmers. By taking a careful history I often find evidence of pesticide exposure in CFS patients often they had not connected the chemical exposure to their symptoms. Examples are woodworm
timber treatments, house fumigation, excessive use of fly sprays/Vaponas, pet flea treatments etc.
HYPERVENTILATION: THE BUTEYKO METHOD
March 1999
At last I am beginning to understand hyperventilation. It has never made sense to me until now
after I have read Buteyko’s book.
I have never understood why humans evolved such an inefficient system of breathing. We inhale
most of our recently exhaled air, which to me seemed a nonsense – much more efficient to have a
one way flow of air over a surface, like fish do with water over gills. However there is a good
reason. Life evolved over millions of years in an atmosphere rich in carbon dioxide – the waste
gas of respiration. Eventually carbon dioxide became essential for normal cell metabolism
because cells used carbon dioxide to maintain their optimal pH (acidity). When levels of carbon
dioxide in the atmosphere fell, cells had to develop a mechanism for artificially bathing
themselves in the right level of carbon dioxide for their efficient metabolism. And so lungs
evolved.
Lungs are necessary to keep carbon dioxide levels high in inhaled air and therefore in the blood.
The blood is very efficient at gathering oxygen and all arterial blood is 100% saturated with
oxygen. But here come the crunch! Oxygen is only readily released from red blood cells to
supply oxygen to the tissues in the presence of high levels of carbon dioxide. So what does this
mean in practice?
Many patients, particularly asthma patients, but also CFS patients, have a sensation that they are
not getting enough oxygen to their tissues. Their response to this is to breathe more deeply.
However blood cannot become more than 100% saturated with oxygen. All that happens is that
more carbon dioxide is washed out of the blood. This makes oxygen cling more fiercely to
haemoglobin in red blood cells and therefore oxygen delivery to the tissues is made worse!
Paradoxically, to improve oxygen supply to the tissues you have to breathe less! Breathing less
increases carbon dioxide levels and improves oxygen delivery.
53
Lowering carbon dioxide levels in the blood has other dire effects. It upsets the acidity of the
blood and causes what is known in medical jargon as a respiratory alkalosis. This causes all sorts
of awful symptoms such as panic attacks, pain, fatigue, feeling spaced out and dizzy, brain fag,
brain fog and so on.
Again, taking the evolutionary approach, humans used to live a far more active existence.
Because we are now so sedentary, we do not need the oxygen supply our lungs have evolved to
deliver. We do not produce enough of the waste gas carbon dioxide either. The system is under
used and so there is an in-built tendency to breathe too much. This is worsened by stimulants
such as excitement (sitting in front of an exciting film, but not using any oxygen up), caffeine,
computer games and so on.
Hyperventilation is probably extremely common and we could all benefit from breathing less.
We have simply got into bad habits and have to re-learn how to breathe.
Asthma is how the body tries to prevent you from hyperventilating. The airways constrict to try
to reduce gaseous exchange to allow carbon dioxide to be retained. Breathing harder, or deep
breathing makes asthma worse. Inhalers to open up the airway, whilst relieving the airway
constriction in the short term, in the long term worsen hyperventilation and therefore the cause of
asthma.
Typical Symptoms of Hyperventilation
Vivid dreams or nightmares, tingling and numbness of hands, feet, around mouth, yawning or
sighing, sensation of need to take a deep breath, panic attacks, feeling of being spaced out, faint
or dizzy, episodes weakness and exhaustion, muscle spasms, twitching, cramp, aching.
Are You Hyperventilating?
If you are asthmatic then the answer is a definite yes. All asthmatics hyperventilate (it is only in
the very extreme forms of asthma that oxygen levels in the blood fall).
Many CFS symptoms are the same as those from hyperventilation. Buteyko suggests you test
yourself with his controlled pause: Sit comfortably in an upright chair, breathe in normally and
out holding your nose after the out breath. Count the seconds using a watch until you feel you
have to breathe in again. The number of seconds counted gives your control pause. The ideal
pause is 60 seconds, but a pause of 40-60 denotes good health. A control pause of 30 means you
are breathing enough for 2 people and suggests mild asthma. A control pause of 15 seconds
indicates you are breathing for 4 people: this is serious hyperventilation. A control pause of 10
seconds denotes severe asthma.
The other method to check for hyperventilation is to do a forced test of over breathing. Sit and
breathe deeply through your mouth, as if you are running. Within 30-40 seconds you will develop
unpleasant symptoms which may include dizziness, palpitations, cough or wheeze. If your
troublesome symptoms are flared, this suggests hyperventilation may be the cause.
54
Treatment Of Hyperventilation
Firstly you must always breathe through your nose. This increases the amount of air which is
exhaled and immediately reinhaled and is therefore relatively rich in carbon dioxide. Mouth
breathers must make a conscious effort to close their mouths always, if necessary tape your lips
closed at night.
Secondly, breathe less deeply and more slowly. Initially this brings a feeling of wanting to
breathe more, but this must be ignored. It is a bit like having an irritating itch and not being
allowed to scratch it. Some anti-hyperventilation techniques ask you to practice breathing using
your diaphragm instead of your chest. I don’t see the logic of this because whether you use your
diaphragm or your chest muscle, air will still be drawn into the lungs. Buteyko is similarly
unconcerned about diaphragmatic breathing so in this we agree! The results of reducing your rate
of breathing are felt very quickly – within a few minutes – good positive feedback to encourage
you to continue! But improvement may continue over weeks so keep at it!
Thirdly if you catch yourself sighing, yawning or taking a deep breath, hold your breath for a few
seconds, breathe out very slowly, then start breathing slowly and shallowly again.
There is another mystery which may also be explained by hyperventilation. Virtually all of my
CFS patients are magnesium deficient. Why? The body’s response to a respiratory alkalosis is to
pee out bicarbonate. Bicarbonate is a negatively charged ion and cannot leave without a
positively charged ion. Guess which positively charged ion goes out with it? Spot on –
magnesium! Magnesium deficiency may well be another indicator of hyperventilation.
I would also like some of my patients to test their urine for acidity/alkalinity. This should be an
easy test with the appropriate dip stick (litmus testing for the chemists in the audience! I’m
looking for a cheap urine test). I would expect the magnesium deficient hyperventilaters to be
alkali. Guinea pigs please!
Further information from the book “Freedom from Asthma, Buteyko’s Revolutionary Treatment”
cost £7.99 from the Hale Clinic Health Library tel 0990 168 146 or the author Alexander
Stalmatski tel 01523 192 111
It is interesting to speculate about the relationship between asthma and hyperventilation and
fatigue. In my experience it is unusual to see fatigue and asthma in the same patient at the same
time, although with CFS patients there is sometimes a past history of asthma. Perhaps the local
reaction to hyperventilation is asthma (by constricting the airways to reduce gaseous exchange)
and the systemic reaction is fatigue (through reducing blood supply, to try to increase carbon
dioxide retention in the blood in an attempt to improve local oxygen delivery). Perhaps treatment
of asthma by using bronchodilaters (blue inhalers), whilst relieving the local airways obstruction
and wheeze actually then allow the systemic symptoms to become a problem? This is
speculation! Feedback please!
HORMONAL DISTURBANCES IN CFS
January 1997
55
It is now quite clear there is a distinct hormonal disturbance in CFSs with abnormalities in the
hypothalamic-pituitary-adrenal axis. There is plenty of evidence to suggest abnormalities of the
thyroid glands. Hitherto I have been reluctant to prescribe hormones to my CFS patients simply
because I felt I did not know enough. However two papers recently out in the Journal of
Environmental and Nutritional Medicine have clarified matters to me.
The first is a paper from an Australian psychiatrist Paul Holman who noticed that very slim
individuals seem particularly prone to chronic fatigue, anxiety and environmental sensitivity. He
then reviewed the literature and discovered reports from doctors who tried to classify people in
terms of their constitution. Of most interest was that done by Sheldon in 1940 when he published
The Varieties of Human Physique where he described three dominant types - the endomorph, the
mesomorph and the ectomorph.
It is the ectomorph who interests us because he/she seems susceptible to CFS. Sheldon noted
ectomorphs were introverts under 'strong inhibitory control'. They tend to be extremely sensitive
to noise and 'distractions'. They usually revealed histories of allergies, skin complaints, chronic
fatigue and insomnia. They needed to eat more and oftener than other types, needed protein in
'large quantities' and had difficulty adjusting to changes in climatic conditions. A similar
description is given by Tintera who described a group of 200 patients whom he characterised as
having suboptimal adrenal cortical function. These individuals showed an asthenic habitus,
crowded lower incisors, cold extremeties, postural hypotension and tenderness in the adrenal
angle. Their commonest complaints were anxiety, depression, headaches, salt and sugar craving,
drug reactions, allergies, pre-menstrual syndrome, gastrointestinal problems (particularly
alternating constipation and diarrhoea) and dermatoses. Laboratory findings included a flat
glucose tolerance test, eosinophilia and low urinary 17-ketosteroids. Tintera hypothesised that the
main problem for these people rested in a constitutional adrenal weakness which expressed itself
in symptoms when the person was chronically stressed. His treatment was a high protein diet,
low refined carbohydrates, more salt, hydrochloric acid (to help protein digestion), B vitamins,
vitamin C and whole adrenal gland injections.
The ectomorph has a constitution associated with anxiety and insomnia. These people are more
'aroused' and have a higher demand for nutrients, energy requirements and repair of body tissues.
Normally the body repairs damaged tissues during sleep. Hormonally this is marked by a switch
from cortisol and adrenalin in the day to testosterone and growth hormone at night, catabolic or
breaking down by day to anabolic or building up by night.
We know that carbohydrates (such as sugar, wheat, potato etc), stimulate the thyroid gland,
reduce pain thresholds, and elevate mood (combating anxiety and depression) and so the
ectomorph likely to be tired and stressed, craves sweet foods in an attempt to attain calmer
alertness. However excess carbohydrate raises metabolic rate, is stimulating, depletes nutrients
(vitamins and minerals) and eventually damages the body resulting in chronic fatigue.
56
This makes sense to me. I know that dieting and restricting carbohydrate intake makes people
cold, depressed and they lose energy. Similarly if I want to keep going working beyond 10.00pm
a bar of chocolate keeps me awake to midnight if necessary!
Holmans advice to ectomorphs is that prevention is better than cure. He suggests:
57
* Ectomorphs learn the virtues of relaxation, regularity and stress management at an early age.
* Maintain good regular sleep. This is of paramount importance and insomnia should be seen as
an early warning sing of hyperarousal.
* Protein in the middle of the day is essential to prevent the 'catabolic run down of mid to late
afternoon'. Animal protein in stews or casseroles is best as ectomorphs are poor digesters.
Vegetarians should supplement their diet routinely with amino acids.
* Ectomorphs should be wary of food sensitivity especially wheat and legumes.
* Ectomorphs need more of everything - food, vitamins, minerals, antioxidants (i.e. vitamins
A,C,E and selenium) water (they tend to dehydrate readily), amino acids. (To this I would add
essential fatty acids and salt). Modest exercise to build muscle mass is helpful. Avoid refined
carbohydrate and alcohol.
* Recovery takes time. Use thyroid and adrenal supplements.
The second paper is by Dr B.J. Durrant-Peatfield who explains how thyroid disease is hugely
under-diagnosed. This arises primarily because doctors rely too heavily on biochemical tests
instead of clinical symptoms and signs. Thyroid output falls throughout life, partly through
ageing and partly because it is easily damaged. Durrant Peatfield estimates that anything more
than a 15% loss will produce symptoms. The symptoms and signs of thyroid failure he lists are:
weight gain, lethargy, sensitivity to cold, heat intolerance, fluid retention, mood swings and
depression, poor memory and concentration, hair loss, arthralgia and morning stiffness, skin
problems and furunculosis, headaches, vertigo and deafness, hypoglycaemia, constipation,
menstrual problems, pre-menstrual tension, digestive problems, infertility and loss of libido.
Signs are puffy faces, puffy eyes, hair loss classically the outer third of the eyebrows, cold
extremeties and dry skin, rashes, eczema and boils, enlargement of the tongue, hoarse voice, soft
pulse or bradycardia, goitre or absent thyroid tissue, slowed Achilles tendon reflex. Further
useful information is the basal body temperature. Use a mercury thermometer to take the
temperature in the armpit over 10 minutes immediately on wakening. Temperatures consistently
below 97.8F (36.6C) indicates slow metabolic rate. This can be confirmed by blood tests.
Treatment is to correct trace elements (especially zinc, magnesium, iron and selenium) and give
thyroid hormones. In UK sodium thyroxine is usually used, starting with 50mcgms daily and
increasing the dose every 2-4 weeks depending on the response. Sodium thyroxine is very cheap.
There are reasons to suppose that whole natural dessicated thyroid extract (Armour thyroid) may
be better for some patients, but this is only available in the US and is much more expensive
(100tabs of 60mgs costs £16.)
Thyroid hormones in low doses like this can do no harm. Indeed they may well do good.
Normalising thyroid function lowers cholesterol, lowers blood pressure (by improving kidney
circulation) and reduces arteriosclerosis. In women, menorrhagia, PMT, infertility and early
menopause can be signs of thyroid deficiency.
58
Ref: Treating the Ectomorphic Condition Constitution. Paul Homan MA MB, BChir, MRC Psych, Journal of Nutritional
and Environmental Medicine (1996) 6, 359-370.
Aspects of a Common Missed Diagnosis: Thyroid Dysfunction and Management. B.J. Durrant Peatfield MD BS LRCP
MRCS. Journal of Nutritional and Environmental Medicine (1996) 6, 371-378.
Thyroid supplementation
23rd June 1999
I routinely check a T4 in all my CFS patients. If the level falls in the lowest 20% of the so
called “normal” range then I would treat with thyroxine. I often find GPs complaining that the
best test of thyroid failure is a TSH – thyroid stimulating hormone. However this is often
normal even with a low T4. I suspect this reflects the hypothalamic-pituitary-adrenal
hypofunction in CFS.
I was intrigued to hear during a recent trip to London that some patients with CFS develop
hypothyroidism on blood testing during the night only. Again this ties in with a failure of
normal hormone production from the glands of the body.
Dr Skinner who is a consultant virologist at Birmingham has shown how many patients with
CFS have low normal levels of thyroxine and do well when their levels are increased to
average levels. The laboratory I use has a normal range of 9.0-20.0pmol/l and I am finding
many levels coming back at 9.0-13.0pmol/l. In these patients there is a clear indication for
trying thyroxine.
I usually start with thyroxine 50mcgms (25mcgms for a small person or child) and increase in
25mcgms increments every month up to 100mcgms (or 75 mcgms in a small person or child)
at which point the T4 needs rechecking. The aim is to get into the middle or upper half of the
“normal” range. If I had a patient who was very small or debilitated I would start with
12.5mcgms.
If the dose of thyroid was too high, then side effects would develop - hotness and sweating,
fine tremor and palpitations. In this event, stop the thyroid supplement immediately. Taking
additional thyroid will clearly make this situation worse. If in doubt, please phone in. Some of
my patients do seem to get the symptoms of overactivity despite the blood levels being normal.
I do not understand why this should happen. In this event try the tablet under the tongue in
small doses and build up slowly.
Thyroxine is only available on prescription but I am able to supply. Thyroxine is inexpensive, but
there is a dispensing fee on each order of £5 so order plenty! This covers the cost of recording
and me signing for all dispensing drugs.
DHEA and cortisol
June 2000
It is clear that patients with CFS have poor output of hormones from many of their endocrine
glands. Professor Behan has shown abnormal output from the pituitary gland. This is the master
59
gland which controls the output from all others. So it is hardly surprising to find abnormalities in
other areas.
For example, many patients have low levels of thyroxine and correction often brings great
benefits. Furthermore, the sleep disturbance in CFS is often associated with low melatonin levels.
This is a hormone made by the pineal gland. Sleep may well be improved by giving melatonin at
night.
The adrenal gland is responsible for the body’s hormonal response to stress. It produces
adrenaline, which stimulates the instant stress hormone response (fight or flight reaction). It also
produces cortisol and DHEA, which create the short and long term stress hormone responses.
Cortisol suppresses the immune system, breaks down tissues and has a generally catabolic effect.
However, these effects are balanced out by DHEA, which has the opposite effect – activating the
immune system and building up tissues.
DHEA has only recently been looked at because it was not realised that it had any important
actions.
Cholesterol

pregnenolone 

DHEA
progesterone 
cortisol


androstenedione


Oestrone

testosterone

Oestrodiol
DHEA is an anabolic steroid – that is to say it builds up tissues, in contrast to cortisol, which is
catabolic and breaks down tissues. Both are essential for life in the right amounts – too little
causes problems, as does too much.
In order to ensure the right amounts of both hormones, they must be measured. This can be done
with the adrenal stress index (ASI) test. By measuring and supplementing within the
physiological range, with biologically identical hormones, one is not going to get any unpleasant
side effects i.e. we are trying to copy Nature.
The ASI test looks at cortisol and DHEA levels over 24 hours. This test is available through
Individual Wellbeing Clinic (I can send you a kit, cost £70) and entails taking salivary samples
through the day (yippee, no needles!). Indeed salivary sampling is felt to be the most accurate
way of assessing steroid hormone levels. DHEA is available over the counter in the USA, where
the FDA has classified it as a food supplement up to a daily dose of 25mgs. In this country I need
a license from the Home Office to import it! Cancer patients have been given up to 3,500mgs a
day for 2½ years, apparently with no side effects. By comparison, a normal person produces 2060
30mgs a day of cortisone, side effects appear after a few weeks of 100mgs a day or a few months
at 50mgs a day.
I have been starting my patients on 25mg DHEA a day . However I have had some abnormally
high levels come back and so I now start with 12.5mgs (half a capsule). At a recent talk from Dr
Jonathan Wright I hear he uses 5-15mgs daily. All levels need to be monitored.
A typical abnormal ASI Test Result - cortisol
Interpretation Of The Adrenal Stress Index Test for DHEA and Cortisol Levels
DHEA is easy. Low levels mean a deficiency and DHEA supplementation is indicated.
Cortisol is more awkward. Levels vary according to the level of stress and for how long that
stress has been applied. Increasing cortisol production is the normal response to stress and is
highly desirable, so long as the stress is removed and the adrenal glands can recover. On-going,
unremitting stress means the adrenal gland and the whole body is in a constant state of alert, does
not get time to recover and eventually packs up. So, there are several stages of adrenal function
gradually leading to failure:
1. Normal levels of cortisol and DHEA. Normal result. Normal adrenal gland
2. Raised cortisol, normal DHEA. This indicates a normal short term response to stress. So long
as the stress is removed, the adrenal gland will recover completely. The adrenal gland is
functioning normally but the patient is acutely stressed.
3. High levels of cortisol, low levels of DHEA. The body cannot make enough DHEA to
balance cortisol. This is the first sign of adrenal exhaustion. This is a normal response to
chronic stress. However the patient needs a long break from whatever that chronic stress may
be – insomnia, mental, physical or emotional overload, poor diet or whatever. Failure to
correct leads to exhaustion. DHEA can be supplemented to make the patient feel better, but it
must be part of a package of recovery without which worsening can be expected.
4. Cortisol levels low, DHEA levels low. The gland is so exhausted it can’t make cortisol or
DHEA. By this time patients are usually severely fatigued. Very low levels indicate
Addison’s disease – complete adrenal failure. Untreated Addison’s disease inevitably results
in death.
61
5. Cortisol levels low, DHEA borderline or normal. This probably represents the gland
beginning to recover after a long rest. DHEA may be used to help patients feel better whilst
they continue their programme of rest and rehabilitation.
In practice, the interpretation is often not so straightforward because cortisol levels fluctuate
through the day in response to the stresses of daily life, peaking in the morning and falling as the
day progresses.
I do sometimes see patients with low cortisol levels who do not have overt Addison’s disease.
Some do respond to cortisol, but I would use sub-physiological doses – ie. up to, but not more
than 15mgs a day. (Please note that the usual steroid used in medicine is prednisolone. 5mgs of
prednisolone is equivalent to 20mgs of hydrocortisone). Both these are prescription only drugs.
I am aware that DHEA is still in the experimental stage. I do believe it is safe in physiological
doses. However, I need to learn much more.
After 3 – 6 months if the patient wishes to continue taking DHEA then levels need to be rechecked, the cost of this test is £33.00.
A New Hydrocortisone Trial
Another randomised, controlled, crossover trial of low-dose hydrocortisone treatment for CFS
has recently been published. 32 participants, fulfilling both the Oxford and CDC 1994 criteria,
completed this short-term trial. Participants received 5mg or 10mg of hydrocortisone for 28 days
and placebo for 28 days.
The results revealed modest, statistically significant improvements in fatigue with this low-dose
hydrocortisone treatment compared with placebo. The degree of disability was also reduced with
hydrocortisone treatment but not with placebo. There was no significant difference in changes in
fatigue score when 5mg and 10mg doses were compared. The authors suggest that, in view of the
lack of dose response in this study, 5mg is a sufficient low dose of hydrocortisone.
Participants who responded to this hydrocortisone treatment did not differ from ‘non-responders’
in terms of their pre-treatment cortisol levels. Although none of the participants in this study had
a current psychiatric illness, those who responded to hydrocortisone treatment had fewer
psychiatric symptoms prior to treatment.
Based on the results of the insulin stress test, this short-term, low dose hydrocortisone treatment
was not found to cause significant suppression of adrenal gland function. None of the participants
dropped out of the study and only minor side effects were reported.
The authors conclude that this low-dose hydrocortisone treatment resulted in “significant
reduction in self-rated fatigue and disability in patients with chronic fatigue syndrome”.
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Comment
This study sheds interesting light on the possible role of low cortisol levels in the disease
processes involved in CFS. Caution is required, however, in interpreting the results. Participants’
baseline cortisol levels could not predict their response to hydrocortisone treatment and
participants appeared to have baseline cortisol levels within the normal reference range.
In another randomised controlled trial of hydrocortisone therapy ( see Interaction 29, page 21 for
a review), McKenzie at al., used a higher ‘low-dose’ hydrocortisone treatment of 25 - 35mg
daily. They found that this dose was associated with some improvements in symptoms but caused
significant adrenal suppression. Neither of these research teams currently recommended the use
of hydrocortone as a treatment for CFS. The present study assessed the effects of hydrocortisone
treatment in the short-term only. As the authors point out, further studies, involving longer
durations of treatment and follow-up are required to assess the long-term effectiveness and safety
of this treatment.
Reference: Cleare et al; The Lancet, 1999, Vol. 353 February 6, p455-458
Sex Hormone Replacement Therapy
June 2000
Any person who had asked me about this previously would know it was an area about which I
have concerns. This is because hormones have extremely powerful effects and the wrong dose
may have far reaching implications for risk of cancer and heart disease. However some of my
CFS patients have done well on hormones, whether they have been sanctioned by me or not!
I recently attended a day at the Royal College of General Practitioners about the use of hormones,
at which Dr Jonathan Wright spoke. He has pioneered the use of what he calls “Biologically
Identical Human Hormones” in the treatment of a wide range of conditions. His philosophy is
simple – copy Nature. Hormones should only be used where there is a demonstrable deficiency,
in physiological doses, using biologically identical hormones, delivered transdermally (so they
slowly leak into the circulation, bypassing the liver), mimicking natural cycles, where relevant.
Treatment must be monitored.
I was very happy to hear Dr Wright say this because this has also been my philosophy. These
principles I apply to thyroid hormones (which can be given by mouth because they are not
digested and slow acting), cortisol and DHEA. The sex hormones are different because they are
digested in the gut and cleared by the liver.
Hormones such as progesterone, oestrogen and testosterone have been prescribed for many years.
However, all such “prescribables” are synthetic analogues, not biologically identical hormones,
which have been given in supraphysiological doses (i.e. high doses) with scant regard for
biological cycles and doses. Most have been given without any monitoring. Therefore this
method of use has caused long term side effects. The action of any hormone can be changed
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hugely and unpredictably by minor alterations to its chemical structure – hence the need for
biologically identical hormones.
You might ask why was this not done in the first place? The answer is patentability. Natural
hormones cannot be patented therefore nobody can make any money out of them. Lots of money
can be made from promoting synthetic hormones because the manufacturer gets the monopoly.
Oestrogen
Oestrogen exists in the body in three different forms namely oestriol, oestradiol and oestrone, in
the proportions 60-80%, 10-20% and 10-20%. This compares with Premarin (from pregnant
horses) with equilin 6-15%, oestradiol 5-19%, and oestrone 75-80%. As a result of the “foreign”
and unbalanced oestrogens in Premarin, it has a thousand times greater growth promoting effect
on the womb. To replace oestrogen correctly, one first needs to measure oestrogen levels and
prescribe what is appropriate for that age in the correct physiological proportions, namely by
using triple oestrogen cream. An average dose would be 2.5mgs daily, adjusted according to
monitoring.
Progesterone
Again levels must be measured and the biologically identical progesterone given transdermally
with progesterone cream aiming for a daily dose of 30mgs, again adjusted according to
monitoring. Further reading in Natural Hormone Replacement by Dr Wright available from
www.smart-publications.com
DHEA
The same principles apply. Dr Wright finds the usual dose is 5-15mgs daily. This is less than I
have been starting patients off on, and in fact I have found that for many people 25mgs is too
much and most people probably need 12.5mgs (half a capsule) daily. Again levels need to be
monitored.
Testosterone
Again the same principles apply – measure levels, use the biologically identical hormone given
transdermally and monitor. Apparently a common effect is improvement in muscular strength
and stamina – hardly surprising when one considers the effect of testosterone on prepubertal
boys! Further reading from Maximize Your Vitality and Potency by Dr Wright available from
www.smart-publications.com
When to give?
Sex hormones need to be given in women according to their menstrual cycle as it is or how it
used to be. This is in order to mimic the natural secretion of hormones. So, for example, for a
woman with a 30 day cycle the recommended supplementation looks like this:
Days of cycle
1 to 11 12 to 15 16 to 25 26 to 30_1__to__11
Triple oestrogen cream ****************************
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********
Progesterone cream
Testosterone cream
DHEA
******************
*****************************
********
***********************************************
Day 1 of the cycle is the first day of your period – the first day of bleeding.
Dr Wright went on to demonstrate how these combinations of hormones had many benefits
which add up to a slowing of the aging process, but without the side-effects of using high dose
synthetic hormones.
Prevention Of Cancer
The greatest worry when using sex hormones is the long term risk of cancer. Oestrogens are
converted in the body to different oestrogens, some “good” such as 2-hydroxyoestrone, some
“bad” such as 16 alpha hydroxyoestrone . The enzyme which controls this balance is inhibited by
a natural substance indole-3-carbinol found in cabbage and all such brassicas. Indeed a study by
Dr Marie Bell demonstrated complete regression of cervical cancer in over 40% of women
simply by taking indole-3-carbinol. This ratio of 2/16 alpha hydroxyoestrone is critical and
improved by eating cabbage. So the message is, if you want to prevent breast, cervical or womb
cancer, eat up your cabbage!
Using Testosterone in Men
The vitality and health of men parallels their testosterone levels through life. Testosterone is
good for men and improves well being, protects against heart disease, improves circulation,
reduces clotting tendency, protects against osteoporosis, lowers cholesterol, protects against
diabetes, obesity and all those nasty things men can do without. Indeed, accidents aside, a man’s
risk of disease after puberty parallels his testosterone levels throughout life.
However, as with women, testosterone has been misused by doctors and got a bad name for
itself. It has been used in high doses and as synthetic analogues (because of patentability) and so
all the side effects and problems have become apparent.
To use testosterone safely one must measure the levels first, use the biologically identical
testosterone as a transdermal cream, then monitor levels to make sure one remains within
physiological ranges. It can be given continuously.
Preventing Prostate Cancer
It has long been thought that testosterone is the cause of prostate cancer. But this does not really
make sense since it is the older man with declining levels of testosterone who get prostate cancer.
It appears to be abnormal metabolism of testosterone which is the cause of the problem. As men
age, their metabolism goes awry and a disproportionate amount of testosterone is metabolised (by
an enzyme aromatase) to oestrone and oestradiol – it is these female hormones which are the
culprits in prostate cancer.
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Therefore it is important to monitor levels of not just testosterone but also oestrogens in men on
testosterone. If the oestrogens are raised then the offending enzyme aromatase can be inhibited
by crysonine (a natural constituent of passion flower) 4 capsules of 500mgs daily. Furthermore
there is evidence to suggest that, as with oestrogens and female cancers, there are “good” and
“bad” oestrogens and the 2/16 alpha hydroxyoestrone ratio is also important. As above, the ratio
can be improved by eating cabbage and other brassicas – so keep chewing!
Monitoring Hormone Levels
All these hormones can be monitored using salivary samples. This makes it very user friendly! I
can supply the kits – you do the tests in your own time and post them off to Diagnostic Services
Ltd.
Adrenal stress index test – measures cortisol levels over 24 hours and DHEA - £70
Post menopausal profile – oestradiol, progesterone and testosterone – 4 salivary samples over 2
weeks. Cost £97
Pre menopausal profile – oestradiol, progesterone and testosterone - 11 samples over 28 days.
Cost £115
Male hormone profile – same as post menopausal profile. However a testosterone only would
require 4 samples over 24 hours – cost £78.
DSL also offer a comprehensive panel of premenopausal profile plus cortisol, DHEA and
melatonin at £160.
2/16a hydroxy-oestrone ratio – at present this is only available in the USA – but watch this
space!
Bear in mind that if hormones are prescribed, then levels must be monitored.
The Hormone Creams
At present these are only available in the USA but I can order them. The creams and costs are as
follows:
Triple oestrogen cream
Progesterone cream
Testosterone cream
I am still looking into the cost of these preparations
- please, phone in to enquire in a week or two
The doses given are not enough to cause a “period” in women– ie. there should be no bleeding.
The area of the body most sensitive to the hormone creams for women is the vulva and vagina
and so it is recommended that the creams are applied directly to this area. This helps many of the
local symptoms which may arise after the menopause – for example, some women with soreness
or incontinence may be further improved.
So Called Natural Progesterone and Oestrogen from Plant Sources
Some plants also produce oestrogen and progesterone like substances. These include the Mexican
wild yam and soya. Whilst these are “natural”, they are not biologically identical. Just as
Premarin is “natural” it is not biologically identical and has harmful effects in humans.
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In the manufacture of biologically identical hormones, wild yam may be used as a raw material to
make DHEA, the three oestrogens, progesterone and testosterone, but the actual content of the
hormones creams has to be carefully manipulated and worked out by a responsible chemist. The
natural hormones in Wild Yam are not in a form which the human body can use and any effects
from Wild Yam cream arise from hormones which have been added to the cream.
Enzyme Potentiated Desensitisation
I end up using EPD in about 1 in 5 of my new CFS patients. I use it for three reasons:
1. To turn off allergies (to foods, chemicals and inhalants) in patients with clear allergy
symptoms which cannot be controlled by avoiding the offending substance. Or because they start
to acquire new allergies. EPD has been proven in double blind placebo controlled trials to be
effective in the treatment of allergy.
2. In patients with complex problems in whom I am not certain to what extent allergy is a part
but I think it is a large part. This often includes patients with dysfunctional gut syndrome (gut
fermentation).
3. Because I can't think what else to try. These may seem like a poor reason, but I have several
patients who have got much better on EPD for no apparent reason. It may well be because EPD is
thought to be an immune regulator and it "adjusts" the immune system in ways unknown.
Enzyme Potentiated Desensitisation (EPD) - Practical Details
EPD is a vaccine which can be used to desensitise patients to both foods and inhalants. The
vaccine has been developed and refined by Dr Len McEwen over the past thirty years. It is
supplied to the user who mixes the appropriate dose in a sterile environment, immediately prior
to dosing.
The vaccine contains:
1-3 diol a kind of alcohol which activates the enzyme. It is used in a tiny dose.
-glucuronidase. This appears to act as a lymphocyte hormone ( lymphokine ). It occurs naturally
in human blood. The amount present in the vaccine is equivalent to that normally present in 1cc
of normal plasma ( white cells contain much more ). In the vaccine it is thought to be responsible
for stimulating the Langerhan cells to migrate to the local lymph glands and "reprogram" a new
population of T suppressor lymphocytes. In the presence of antigen in the appropriate
concentrations, this will result in a desensitisation. ( Conversely in the presence of antigen at a
"wrong" concentration you may get a hypersensitisation ).
Because EPD relies on the production of a new generation of cells, the effect of each dose will
not be fully developed for at least 3 weeks. Simple allergics, such as hay fever, usually respond to
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the first dose. But doses of EPD are cumulative and a few of the more complex allergic patients
will not start to improve until 8 or more doses have been given.
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Antigen mixes:
The beauty of EPD is that one injection can be used to desensitise to a great many allergens. And
there are theoretical and practical reasons for preferring to desensitise with antigen mixes rather
than so-called "single allergens". The following mixes are most frequently used:
"X" - mixed foods and additives, mixed moulds, mixed pollens, cat-dog, flock fly mix and
bacterial mix.
"I" - inhalants alone. This is used to treat hay fever, cat, dog, horse allergy, pure mould and
housedust allergy.
Separate mixes of "odds and ends", laboratory animals and sawdusts are also available
"Fumes mix" - contains perfume oils, terpenes and other antigens which are not miscible with
water unless they are extremely dilute.
Antigen Strengths
EPD works by manipulating the normal immune processes for creating and turning off allergies.
Therefore success or failure depends largely on priming the patient in the best possible way.
What makes EPD critical is the amount of antigen present at the injection site, at the time of
injection. For the low dose "" strength, the aim is to have approximately 10,000 molecules of
each food antigen for desensitisation present at the injection site. Most patients receive X for
food allergy.
For inhalant desensitisation of the airways, the best dose ( designated "C" strength ) is equivalent
to that received in a prick test. So most patients for seasonal hayfever or asthma would receive
IC.
Patients with chemical sensitivity receive the fumes mix at  strength.
Allergen Exposure At The Time Of Treatment
Treatment for seasonal allergies should be given at least 4 weeks before the season begins. There
is a theoretical risk that one might hypersensitise a patient if he/she is exposed to allergens at
treatment time. However, I have now been using EPD for 10 years and have given over 2,000
treatments and have not seen this happen, therefore there are no special precautions a propros
environment.
Desensitisation for foods works best if the patient sticks to their “safe”, ie non-reacting foods for
the 24 hours before and 3 days after the EPD injection.
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Theoretically there is nothing under the sun, including the sun, to which one cannot be allergic. It
is not uncommon to see patients who have become sensitised to their own gut flora. In these
cases it is necessary to reduce the antigen load starting 4 days prior to a dose of EPD. The
commonest problem is gut fermentation and drugs used to pretreat include Sporanox and nystatin
powder. Allergy to gut bacteria requires pretreatment with antibiotics.
Indications For Use - any condition caused by allergy such as
Asthma, eczema, rhinitis, chronic urticaria, angioneurotic oedema.
Hyperkinetic syndrome
Migraine and chronic headaches
Irritable bowel syndrome
Inflammatory bowel disease
Food induced psychological states - depression, anxiety.
Post viral syndrome
Multiple food allergy
In some instances, hyperventilation is caused by food allergy.
I do sometimes use EPD for the worst possible reason, that is I can’t think of anything else to do
when all else has been tried. However it is surprising how often this works! Hidden allergies to
foods, inhalants and chemicals are common causes of recalcitrant symptoms! One of the joys of
using EPD is that it desensitises to all allergens across the board, so it is not essential to know all
one’s allergies for it to work.
EPD Can Be Blocked By:
Acute viral infections immediately during or after treatment. If there is any suggestion that the
treatment has not taken because of a viral infection then I invite patients to come back in a month
for a top-up, for which there is no charge.
Stress - try to make the EPD day an easy one!
Nutritional agents: mega doses of vitamin C may upset EPD (ie more than 2 grams a day), cod
liver oil – stop these for 1 week before treatment and for 2 weeks after.
Drugs: paracetamol, aspirin, NSAIs, Ketotifen, slimming pills, ventolin, bricanyl in large doses
(6 puffs a day is fine), trimethoprim, Septrin and antimalarials, Cimetidine or Ranitidine,
Migraleve, "cold cures”.
Asthmatics who rely heavily on their inhalers are a special problem - up to six puffs a day of their
bronchodilator is safe. For this group it is often best to use a short course of steroids ( such s
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prednisolone 15mgs one day before and 3 days after) to reduce the need for inhalers.
Aminophylline helps EPD and is also useful.
Success Rate
A pessimistic estimate would be that EPD will fail in about 20% of suitable patients with known
allergies. The rest will experience varying degrees of improvement. Follow up studies after 5
years and double blind trials suggest that EPD has much greater long-term success than any other
method of immunotherapy.
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Safety
Approximately 300,000 treatments of EPD have been given world wide over the past 25 years.
For patients with severe anaphylactic type reactions I first skin test with a tiny dose of antigen. If
there is no reaction I then use the "cup" method whereby the epidermis of the skin is scraped off
and the vaccine applied in a 1.5 ml hemispherical plastic container. This can be removed and
antigen wiped off in the event of any reaction. About 100,000 treatments have been given by the
“cup” method. There have been no life threatening reactions with EPD. It must always be
remembered that when foreign antigen is injected the usual safety precautions should be taken. I
always carry adrenaline, antihistamines, steroids etc but I have never had to use them, or even
consider using them in any patient.
Trials
Published double blind trials have shown that EPD is effective in the treatment of seasonal
hayfever and asthma (several trials ), ulcerative colitis, childhood migraine and hyperactivity. At
the time of writing EPD has also been successful in further double blind trials studying hay fever
( 4 trials ) and childhood house dust mite asthma. The results of all these trials will be submitted
for publication. Uncontrolled trials have also shown benefit in the treatment of eczema, irritable
bowel syndrome, urticaria, rhinitis and asthma. Clinical experience from over 100 clinicians
working world wide ( and growing ) is encouraging. More trials are urgently required. The
American audit of EPD patients shows results that are so good that I can hardly believe them!
INSTRUCTIONS TO FOLLOW FOR EVERY DOSE OF EPD
When I first started using EPD in 1988, there were strict instructions for patients to follow
apropros diet and environment. These applied because there is a theoretical risk that patients
could make themselves more allergic. However I now believe these risks are purely theoretical in practice this does not seem to happen.
Diet For the 24 hours before EPD and three days after I recommend eating those foods to which
you are not presently reacting against badly. i.e. your normal “safe” diet. However I recommend
avoiding alcohol for that period.
Environment Try to avoid unnecessary exposure to strong chemicals and fumes for the 24 hours
before and three days after.
There is no theoretical reason why EPD should be avoided in pregnancy and indeed I have
treated many ladies with EPD throughout pregnancy. The only problem is that should anything
go wrong, the EPD may be unfairly blamed.
If a cold/flu is caught immediately after EPD the treatment may be spoilt, in which case I invite
you back for a free top up.
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Vitamins and minerals. Continue to take your normal supplements. However there are some
supplements which are under suspicion as upsetting EPD. I am not convinced of these because
many of my patients take these and the treatment works perfectly well. However, for your
information beware of cod liver oil and megadoses of vitamin C.
Vaccinations should be avoided one week before treatment and two weeks after.
Avoid putting any creams or ointment on the forearm at the site of treatment.
THE COMMONEST CAUSE OF FAILURE IS PARACETAMOL - many cough and cold
remedies contain paracetamol so beware !
Safe painkillers include codeine. If you suffer from headaches, I can supply you with codeine.
Another possible spoiling factor is yeast infection. So patients with gut fermentation syndrome
(so-called candida) should take an antifungal for four days before EPD. I usually use sporanox
100mgs - again I can supply directly if your GP won’t prescribe. Sporanox should not be used
if there is any chance of pregnancy.
How Soon Will I Get Better With EPD?
This is the question everybody asks! I give an EPD every two months for the first three doses,
then every three months for 2-3 doses, and then play it by ear. By then most people will have had
some sort of response and be able to judge when they next need a dose of EPD. I am
disappointed if people have not started to improve by 3-4 treatments, but some people take 8-10
before they really pick up. In this event I don’t charge for my time until the EPD starts working. I
like to see clinical improvement before the diet is relaxed too much, but if EPD is working as it
should, one should end up feeling well and eating a normal diet. However in practice often
people are left with one or two foods they have to continue to be careful with. For example the
antigen in fresh milk and wholemeal bread is unstable and sometimes the desensitisation does
not work for these foods.
Overall about a third of patients with simple allergy problems will have a course of 8 injections
and remain well. About a third need a top up every 6-12 months. However my complex
allergy/CFS patients often need a regular treatment to remain well. This is a bore, but if the price
of good health is an EPD every 4 months, then it is worth it. I have many patients now who I see
regularly simply for such a top up.
Responses to EPD can be fickle and the experienced EPD patient will recognise a good and a bad
treatment. If a treatment has failed completely then I recommend coming back for a top up for
which there is no charge.
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Costs - I charge £30 for my time and £35 for a dose of EPD. However some GPs will prescribe
the vaccine, in which case you just pay for my time and the prescription charge (£5.80). Some
GPs pay for my time through fund-holding in which case there is no cost!
References
1. McEwen, L.M., Ganderton, M.A., Wilson, C.W.M., Black, J.H.D., Hyaluronidase in the treatment of allergy,
Brit. Med. J. (1967) 2: 507-508.
2. McEwen L.M. Effects of sugars and diols on enzyme potentiated hyposensitisation. J. Physiol. 1972. 230: 6566.
3. McEwen L.M., Starr M.S. Enzyme Potentiated Hyposensitisation I, Int. Arch Allergy. 1972. 42: 152-158.
 glucuronidase and hyaluronidase was used to potentiate the hyposensitising effect of injected antigen into
laboratory animals. Guinea pigs were injected with egg albumin, rats and mice with horse serum and all showed
a hyposensitising effect following  glucuronidase and hyaluronidase pre-treatment.
4. McEwen L.M. Enzyme Potentiated Hyposensitisation II, Annals of Allergy 1973. 31: 79-83.
In mice sensitised to horse serum,  glucuronidase prevents the increased sensitivity which results from a
second dose of antigen.  glucuronidase loses this activity with age or in the presence of gelatin. In both cases
glucose will restore the immunological blocking activity of the enzyme. These results give a reason for the
previous variability expressed using different samples of enzyme in earlier experiments. As well as glucose,
glucosamine and N-acetyl amino sugars have a similar effect.
5. McEwen L.M., Mary Nicholson, Kitchen I, Sheila White: Enzyme Potentiated Hyposensitisation III: Control
by sugars and diols of the immunological effect of  glucuronidase in mice and patients with hay fever. Annals
of Allergy. 1973. 31: 543-550.
The ability of  glucuronidase and a small dose of antigen to modify the anaphylactic reaction of previously
sensitised mice has been further investigated. A 1-3 diol structure appears to be most effective in controlling the
hyposensitising effect of the enzyme, although some concentrations have the opposite effect of
hypersensitisation. The dose response curve is W shaped. A clinical trial on hay fever patients confirms that the
results for the diol in mice are clinically relevant.
6. McEwen L.M., Mary Nicholson, Kitchen I., O'Gorman J., Sheila White: Enzyme Potentiated Desensitisation
IV. Effects of protamine on the immunological behavior of  glucuronidase in mice and patients with hay fever.
Annals of Allergy 1975. 34: 290-295.
Using mice pinnal anaphylaxis, the addition of protamine sulphate to the  glucuronidase/diol mixture
displaced the dose response curve, with less diol being required to achieve the same immunological effect. Hay
fever patients also produced similar results. It is suggested that the protamine helps to stabilise the enzyme
mixture, minimising the effect of contaminant proteins.
7. J.W. Hadden, R.G. Coffey, E.M. Hadden, E. Lopez-Corrales and G.H. Sunshine: Effects of Levamisole and
Imidazole on Lymphocyte Proliferation and Cyclic Nucleotide Levels
8. McEwen L.M: Enzyme Potentiated Hyposensitisation V: Five case reports of patients with acute food allergy.
Annals of Allergy 1975. 35: 98-103.
Case reports of five patients successfully hyposensitised to foods including one lady highly sensitive to eggs.
Other cases were sensitive to eggs, milk, fruit and nuts.
9. McEwen L.M. Hyposensitisation. In:Brostoff J and Challacombe SJ, Eds Food allergy and intolerance.
London; Bailliere Tindall, 1987. 985-994.
10. Fell P., Brostoff J. A single dose desensitisation for summer hayfever. Results of a double- blind study
– 1988. Eur. I. Clin. Pharmacol. (1990) 38; 77-79.
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11. Egger J., Stolla A, McEwen L.M. Controlled trial of hyposensitisation in children with food induced
hyperkinetic syndrome. Lancet (1992) 339; 1150-1153.
12. Longo G., Poli F. Bertoli G. Efficacia clinica di un nuovo trattamento iposensibilizzante, EPD (Enzyme
potentiated desensitisation) nella terapia della pollinosi. Riforma Med. (1992) 107; 171-176.
13. Astarita C., Scala G., sproviero S., Franzese A. A double blind placebo controlled trial of enzyme potentiated
desensitisation in the treatment of pollenosis. J. Invest. Allergol. Clin Immunol., (1996); 6(4):248-255.
14. AngeliniG., Curatoli G., D’Argento V., Vena G.A. Pollinosi: Una nuova metodica di immunoterapia. Medit. J.
Surg Med (1993), 253-256.
15. Cantani A., Monteleone M.A., Ragno V., Lucenti P., Buscino L. Enzyme potentiated desensitisation in children
with asthma and mite allergy; A double blind study. J. Invest. Allergol. Clin. Immunol., (1996); 6(4); 120, 270276.
16. Ippoliti F., Ragno V., Del Nero A., McEwen L., McEwen H.C., Businco L. Effect of preseasonal enzyme
potentiated desensitisation (EPD) on plasma IL-6 and IL-10 of grass pollen-sensitive asthmatic children.
Allergie et Immunologie. (1997); 29(5); 120, 123-125.
17. Egger J., Stolla A., McEwen L.M. Controlled trial of hyposensitisation in children with food-induced
migraine. Cephalagia, (1993); 13, (suppl.13); 216.
HEALING WITH SEKA NIKOLIC
(June 1994)
I am always looking for new treatments for any illness, but particularly my CFSs with whom I
have the most difficulty. I usually find I can clear up the "peripheral symptoms" such as irritable
bowel, muscle aches etc, but patients are often left with the "core symptoms" of fatigue, malaise
and "brain fag". There is some evidence from SPET scans to suggest that these symptoms are due
to poor blood circulation to the brain.
I have read abut Seka's work (she is from Sarajevo) and one of my patients has been substantially
helped by her. Since I was to visit London, I telephoned Seka (pronounced 'sec' as in 'second')
and she was kind enough to meet me and explain her work. I also had a long discussion with Gill
Jacobs, Assistant Editor ME Action, who is currently writing a book about Seka's work.
Seka has treated over 1900 patients with CFS and tells me that 90% do well. Such is her
reputation that she is booked up with work many months ahead. However what is particularly
interesting to me, is that the very symptoms that she is best at treating (brain fag, fatigue,
malaise) are the ones that remain in my "failures". Seka tells me that her talent has been inherited
from her mother who was also a healer. Her brother also shares this talent but his "frequencies"
are not perfectly suited to treat CFSs and he sees most success with other illnesses.
Seka uses her hands and concentrates on the spinal cord, brain stem and central nervous system
to get results (called Bio-Energy treatment). She can detect blockages of energy which she can
free. Patients start to improve after a few treatments and are often substantially better after the
first 7 treatments. SPET scanning has shown an increase in blood flow after treatment compared
to before.
Seka finds that patients are unable to respond to her treatment if they are on antidepressants
and/or tranquillisers (sleeping tablets), so these should be slowly withdrawn well before
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attending. Her work is done in conjunction with Mr Alf Riggs, who visits the patient's home and
checks it for geopathic stress and electromagnetic pollution.
Seka works from the Hale clinic, Park Crescent (just off the Marylebone Road), London, tel 0171
637 3377. She charges £60 for a session. New patients need 7 consecutive sessions initially (Mon
to Fri 1st week, Mon Tues 2nd week) and possibly "top up" sessions later. Although she has a
long waiting list, you can ask for cancellations if you are prepared to go "stand-by".
I would very much like to see some of my patients visit Seka. If you do decide to go, please let
me know so that I can write a referral letter.
For further information - see the article written by Gill Jacobs in Interaction 15, Spring 1994.
I have also heard of a healer from Buxton called Steve Gibbs 01298 72757 who is apparently
getting good results but I have no feedback here as yet.
Alf Riggs can be contacted on 01992 719735, 33 Parvills Est, Waltham Abbey, Essex, EN9
1QG. He charges £60 per house plus travel expenses.
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Heparin in the treatment of chronic fatigue syndrome.
3rd April 2000
Thanks to Tim Heatley for sending me details of Dr David Berg’s work looking at heparin in the
treatment of chronic fatigue syndrome. He is proposing that a viral infection results in the body
making antibodies to the virus which then cross-react with protective proteins which line blood vessel
and capillary walls. Normally these protective proteins (such as beta
II glycoprotein I and Annexin V) stop blood from sticking to the wall. If these proteins are destroyed
by antibodies, then blood starts to clot against the wall, initially with the formation of fibrin. Fibrin
deposition produces a sticky web which not only traps undesirable bacteria but also blood cells. This
blocks the free movement of oxygen and nutrients into the surrounding tissues.
If this is indeed the explanation of what goes on, it gives us the answers as to why CFS patients have a
multiplicity of symptoms. Any department of the body can be affected and since the muscles and
connective tissues make up the largest part by volume, tender trigger spots as seen in fibromyalgia
may be explained by these local depositions of fibrin with result of poor blood supply.
Of course, the advantage to the patient in having blood which tends to clot is that it allows bacteria or
viruses to be trapped and attacked by the immune system. However, if this mechanism is not turned
off after all the viruses and bacteria have been killed, then the mechanism itself is damaging to the
body.
Berg went on to look at four measures of clotting and found out that there was a high rate of
abnormalities in CFS patients. Sonoclot was abnormal in 18/20 (90% of CFSs)
Abnormal/total
Sonoclot rate (speed of clotting),
18/20
Soluble fibrin monomer (an intermediate fibrinogen molecule
14/16
produced by immune activation of coagulation products)
Fibrinogen
9/19
Platelet activation score
12/20
The treatment for this is heparin (and low dose aspirin 75mgs for CFSs with platelet activation).
Heparin dissolves fibrin and inhibits clotting. Obviously there are potential dangers here because large
doses of heparin could cause internal bleeding. However, Dr Berg has been using small doses, namely
5,000-8,000 i/u injected twice a day. This is the sort of dose used to treat patients before surgery to
prevent deep vein thrombosis. The real bore is that it has to be injected but it is only a very tiny
amount which can be given fairly painlessly with an insulin syringe and needle. Dr Berg did an initial
trial of 21 cases of which none got worse, 19 had moderate to good improvement and the other two
had at least some improvement. Most patients reported improvements within 48-96 hours of heparin
therapy with improved energy levels.
A hypercoagulable state as a cause of CFS would explain why more women are affected than men –
female sex hormones predispose to hypercoagulability – and many women have been exposed to the
Pill and/or HRT at some time in their lives.
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Berg goes on to suggest that ¾ of CFS/fibromyalgia patients (same thing as far as I am concerned)
have a genetic predisposition to fibrin deposition and local thrombosis in blood vessels. Widespread
thrombosis in the tiny vessels does not cause overt symptoms as one would see with a deep vein
thrombosis or pulmonary embolism, but it would nicely explain the widespread pain and chronic
fatigue of CFS patients.
If anybody is interested in trying this treatment, then I would be very happy to supervise it in
conjunction with their GP. It would be very nice to get some basic tests of blood coagulability done at
a laboratory. However, this may be difficult as most laboratories are geared to looking at a bleeding
tendency rather than a clotting tendency.
However, since the treatment is harmless and simple I would not be averse to trying this treatment for
patients without these tests being done, but of course with the involvement of their GP. If the GP
refuses to supply heparin, then I can supply. The approximate cost would be about £1.50 a day. Please,
get in touch with me if you are interested.
TOXIC CAUSES OF CFS: Organophosphate Poisoning, Silicone, Carbon Monoxide and
Others?
Recognising The Problem and Typical Symptoms
When I first started treating patients with CFS, the cause was either viral or “I don’t know”. I
now realise that many of the “I don’t knows” were cases of poisoning either to
organophosphates, silicone, carbon monoxide, sick building syndrome (formaldehyde, volatile
organic compounds etc) and so on. Furthermore I now suspect that many of those patients with
post viral CFS actually were poisoned by some chemical which weakened the immune system so
that it was unable to cope adequately with a subsequent viral infection. The sort of problems I
have seen is CFS following sheep dipping, spraying agricultural chemicals, being sprayed by
tractor or helicopter and spray drift, working in a chicken farm (fumigation, control of parasites),
working in the sea of factory farmed salmon in Scotland (where chemicals are used to control
fish lice), repeated head lice treatments, house fumigations for flea control or bed bugs, insect
control in hot countries with DDT, OPs etc, control of sand flies (Gulf War Syndrome),
greenhouse fumigations, working in a research plant centre where chemicals were weekly used to
prevent cross contamination, ‘A’ level student doing a biology project with pesticides, carpet
factory where fleeces are washed after sheep have been dipped, lorry driver delivering OPs to
farmers, Government Inspectors in sheep markets, dairy farmers daily exposed to OPs for fly
control in the milking parlour, poisoning through exposure to dumped cans of sheep dip, welders
working in a factory which was manufacturing OPs, timber treatments in houses, treatment of
external parasites in dogs, cats, cows (OP pour ons) and so on. There are many other occupations
where people are exposed to chemicals, but incidents are often forgotten.
With silicone I am not just looking for the obvious breast implant or silicone injections, but
many other protheses have biologically active materials. Examples include testicular implants,
lens implants, Norplant contraceptive device (silicone rods), TMJ work, facial contouring,
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meshes for hernia repairs etc. In the veterinary world reactions to suture materials are well
documented – not so in the medical world.
With carbon monoxide poisoning I am looking for evidence of illness following a house move,
new (or very old) central heating, condensation suggesting blocked chimneys, free standing gas
fires which do not vent to the outside, odd smells etc.
I always ask about occupational history – chemicals in the work place such as building projects,
poultry and egg rearing, manufacturing industry, paints, new carpets, flower industry (lots of
chemicals on flowers), printing industry, “sick building syndrome” and so on.
These patients present with a chronic fatigue syndrome and it is largely this which prevents them
from working. However these chemicals are extremely toxic to other parts of the body and may
also cause:
Damage to nerves – Central nervous system (psychological problems, psychiatric, sleep, brain
fog etc) autonomic nervous system (sweating, temperature control, hyperventilation, etc) and
peripheral nervous system (numbness, tingling etc).
Damage to bones – osteoporosis, abnormal bone biopsies, abnormal bone metabolism
Damage to the immune system – allergies, autoimmune disorders and multiple chemical
sensitivity (and of course CFS). Tests often show immune damage.
Damage to the heart – particularly the electrical conduction system producing arrhythmias
Damage to the endocrine system – abnormalities of the hypothalamic-pituitary-adrenal axis,
thyroid damage, sex hormones
Probable damage to the liver
These chemicals are also carcinogenic, teratogenic (damage to the unborn baby), and damage
sperm causing low sperm counts and infertility.
Further information from Pesticide Action Network UK tel 020 7274 8895
Email [email protected]
TREATMENT OF CHRONIC ORGANOPHOSPHATE POISONING
There is no "standard" treatment of chronic OP poisoning. The following is based on my
experience of treating patients who have become ill through regular exposure to OPs. Treatment
is likely to change as new ideas develop.
Most patients who suffer from chronic OP poisoning firstly become more sensitive to OPs,
which means that they get bigger reactions with smaller doses. The second thing that happens is
that they become sensitive to other chemicals. This is called a "spreading phenomenon" and
classically these people start to react to many other chemicals such as diesel fumes, perfumes,
cigarette smoke, alcohol and so on. Therefore, the mainstay of treatment is to strictly avoid
exposure to all OPs bearing in mind that much of this comes at times outside dipping, including
handling of sheep, market and for some sensitive people, walking through a field of sheep that
have been dipped or, for a few, eating foods that have been grown with the use of chemicals. The
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second aspect is that patients have to avoid other chemicals. This is not easy in modern society
for obvious reasons.
Another aspect of treating chronic OP poisoning is to support the body's natural detoxification
system. This helps the body resist the malign effects of OPs. In my experience the most
important treatment is with magnesium (sometimes given by injection), selenium and vitamin
B12. I also recommend a group of other multivitamins including B complex, essential fatty acids,
fat soluble vitamins and high dose vitamin C. Magnesium and selenium levels can be measured
at a nutritional laboratory in London called Biolab, 9 Weymouth Street, London W1N 3FF.
Referrals are only accepted from a qualified doctor and they need 10ml of blood in a lithium
heparin bottle. The cost is £16 for each of these.
Selenium levels are usually easily corrected by oral supplements and patients may need to take
up to 600mcg a day. Magnesium is much more difficult to correct. I often use magnesium 300mg
a day and combine this with magnesium injections. I use magnesium sulphate 1g in 2ml
(available on prescription) given intramuscularly every week. Some of my patients do inject
themselves but the injections are uncomfortable.
I use vitamin B12 by injection to support the liver and nervous system. This is extremely safe and
many of my patients inject themselves. I use 2ml of Neo-Cytamen subcutaneously or
intramuscularly every week for 10 weeks and then adjust the dose according to response. This
dose is considerably higher than that used for pernicious anaemia and will be a dose that most
GPs are not familiar with but I can emphasise here it is perfectly safe.
In addition to these nutritional interventions it is important that patients rest, sleep well and do
not overload themselves physically or mentally. Many patients have food allergies or
intolerances. I suspect that this is because OPs act as immune adjuvants and stimulate the allergy
system of the body to react inappropriately.
Recent research has shown that patients with chronic OP poisoning have abnormal outputs of
hormones from the thyroid and adrenal glands and this may open up some possible avenues for
future treatment.
Multiple Chemical Sensitivity
MCS causes physical symptoms following exposures to tiny amounts of chemical. It is usually
caused by massive exposure to some chemical such as pesticides, volatile organic compounds,
silicone, carbon monoxide etc. This phenomenon has an acronym TILT -Toxicant Induced Loss
of Tolerance. Sufferers get headaches, brain fog (difficulty thinking clearly, poor concentration
and short term memory etc), irritability, depression, fatigue and so on following exposure to
chemicals such as perfume, traffic fumes, new paint, carpets, cosmetics, cleaning fluids etc.
Sufferers do not like to tell people of their problems (least of all doctors) for fear they may be
classed as psychological cases.
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The essence of treatment is avoidance. Sufferers need to
 Make their house a chemically safe place – no new furniture or carpets, no painting, no
smelly cleaning chemicals, no perfumes or scented soaps, no polishes or sprays. Avoid gas
appliances, cavity wall insulation (formaldehyde), plastic windows. Visitors can be difficult
because they invariably smell of some perfume, wash powder, polish, cigarette smoke or
whatever. All guests have to be trained to avoid these things.
 Keep their car chemically clean. New cars are a disaster for these patients. Even windscreen
washes can be a problem.
 Be careful organising holidays, be careful staying with other people. Pubs, cinemas, theatre,
shopping centres, offices etc. can cause difficulties.
 Be careful with public transport because of inadvertent exposure to perfumes and cigarette
smoke.
 Avoid all exposures to OPs and other toxic chemicals. This presents problems walking in the
countryside as inadvertent exposure to a sprayed field or walking downwind of recently
dipped sheep flares his symptoms. Many streets in towns are sprayed with glyphosate for
weed control and this can cause problems for some sufferers.
The BSAENM has produced a report on MCS cost £10 with the above topics covered in detail.
Order from PO Box 7, Knighton, LD7 1WT or tel 0906 302 0010 premium line 50p per minute.
The Chronic Organophosphate Syndrome (COPS) - The Effects of OPs On The Brain
Dr Robert Davies is a consultant psychiatrist working in rural practice in the South West. At a
recent talk at the Royal College of General Practitioners he described a new syndrome which he
has noticed amongst farmers. He believes this new syndrome is caused by chronic low dose
exposure to organophosphate chemicals. These neurotoxic chemicals upset brain chemistry in
specific ways and lead to the following cluster of symptoms. He calls this COPS.
COPS
1. Personality change - destabilisation of mood (mood swings)
- increased tearfulness, irritability and aggression
- impulsive suicidal thoughts
- rage
2. Impairment of memory and concentration
3. Language disorders - difficulty finding the right words
- spoonerisms in speech and writing
4. Degeneration of hand writing
5. Increased muscular fatigue
6. Increased of factory (smell) acuity and emotional responses
7. Intolerance of alcohol
8. Exacerbation of "sheep dippers 'flu"
9. Idiosyncratic reactions to psychotrophic drugs i.e normal doses of drugs such as
antidepressants make patients much worse.
10. Alteration of sleep.
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Silicone Breast Implants and Injections
I have now been consulted by over 100 patients with chronic ill health following silicone breast
implants or injections. Silicone leaks (so called “gel bleed”) out of the implant where it is picked
up by the reticulo-endothelial cells and distributed widely throughout the whole body. The
government body responsible for licensing silicone, the Medical Devices Agency, claims that
silicone is inert and does no harm despite this gel bleed. My clinical experience and the scientific
literature suggests otherwise.
There are many problems with implants of which the most obvious is infection at the time of
insertion. However, the long term effects are far more malign. This stems from the fact that
silicone cannot be broken down by any enzyme system in the body, is engulfed by macrophages,
carried to distant sites by embolisation and there acts as an immune adjuvant, stimulating
autoimmune disorders. This means that these patients suffer from multisystem autoimmune
disease. In particular clinically one sees mixed connective tissue disease, demyelinating
conditions, autoimmune endocrinopathies, vasculitis, myopathies etc all of which eventually
leads to a chronic fatigue syndrome.
Silicone Implants and Injections
September 1998 (updated March 2000)
My particular interest in silicone arose when I started seeing patients with the classical
symptoms of chronic fatigue syndrome, or myalgic encephalitis following silicone breast
implants. Since 1982 I have seen over 1,000 cases of CFS most of which followed viral
infections. I now have seen over 100 women and men with severe ill health following silicone
implants. The closest diagnosis I can come to is CFS, however the silicone implant patients have
widespread severe pain which is worse than my virally induced CFSs. Many of them have other
diseases namely sero-negative rheumatoid arthritis, scleroderma, multiple sclerosis, systemic
lupus erythematosis and one patients with lung cancer resembling asbestosis (now dead)
diagnosed by consultants from other specialties. I have concluded from my own observations
that silicone causes a new disease unique to silicone but resembling other diseases.
All of these cases I have reported to the MDA. None of these cases were reported to the MDA
by either their plastic surgeon or rheumatologist or oncologist. This simply reflects the level of
gross under-reporting of side effects.
It is well recognised that the silicone bleeds out of the implants very readily and is widely
distributed throughout the body by the reticulo-endothelial system. Silicone leaks out as soon as
the implants are put in. I know this because the Medical Devices Agency, which is the
government body responsible for licensing these products, tells me so. However, where we
disagree is what happens to the silicone then. The MDA maintains that it is inert, but actually
silicone is well recognised as being an immune adjuvant and I suspect in susceptible individuals
we get an inflammatory reaction against the silicone which results in multi-system disease. The
Louisiana ruling on 19.8.97 showed that Dow Corning was developing silicone for use as an
active pharmaceutical agent at the same time as when it was being declared “inert”.
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There is no known mechanism by which silicone can be excreted from the body. Silicone leakage
is accelerated when implants rupture, of which 50% do so by 12 years and 95% by 20 years.
Most of these ruptures are spontaneous but some follow closed capsulotomy, road traffic
accident or whatever. A recent Lancet paper (November 1997) recommends that all implants are
replaced every 8 years. Silicone leakage can be a problem locally whereby the body throws up a
scar capsule against the implant to try to prevent the silicone from leaking. As this scar contracts
this causes local hardening of the breast, often with pain. Surgeons treat this by crushing the
breast between their hands (often with no anaesthetic!) to rupture the scar capsule (this unproven,
extremely painful procedure has been sanitised by giving it a name: closed capsulotomy). The
implant may also be ruptured by this procedure. Once ruptured, the silicone may migrate in a
lump to the axilla and brachial plexus causing pain and blockage of lymphatics, across the breast
causing a mis-shapen breast (one patient had to have her nipples surgically re-sited), or down the
chest wall.
Generalised effects of silicone are caused by silicone migrating via the reticulo-endothelial
system to the rest of the body and causing inflammatory reactions wherever silicone ends up. In
the brain this causes a multiple sclerosis-like syndrome, in the body it can cause a range of
autoimmune disorders, chronic fatigue syndrome, chronic pain and multiple chemical sensitivity.
Tests For Silicone Poisoning
Prof Robert Garry’s lab in the USA offers antibody testing. He measures the anti-polymer
antibody levels. However, this costs $200 plus postage etc. His address is Dept of Microbiology
and Immunology, Tulane University School of Medicine, New Orleans, LA 70112 tel 001 504
587 2027 fax 001 504 584 1994. I can arrange the test if this is easier – I can post the kit to the
patient for the blood to be taken locally and make arrangements to dispatch the sample to
America via a courier. The cost is £150 for the test and £20 for the transport.
I have just had an extract of silicone made up for skin testing and am getting interesting results!
This test is designed to look at the body’s immune response to silicone. The extract is a very
dilute solution (1:100) which is injected intradermally to bring up a weal of about 7×7mm. Ten
minutes later this is measured. A complete non-reactor would have no growth and flattening of
the weal. Reactors show a growth in the size of the weal. A positive reaction supports the idea
that the body is reacting positively to silicone. I charge £4 for this test (to cover the cost of the
extract). Again I don’t know the medico-legal aspects of this test until I have done a reasonable
number including controls (i.e people who have never been exposed to silicone). For physicians
the test extract is available from Allergolab 01344 453 919. This is made up from a new silicone
implant which was generously donated to me by Peter Chapman. I don’t see why it should not be
possible to try a desensitisation technique called neutralisation from the test extract.
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Treatment
I have been in direct contact with Professor Radford Shanklin from the States who has been
most helpful with clinical management. We had a long meeting at the Royal Society of Medicine
where I could pick his brains. The priority is to have the silicone removed by a surgeon skilled in
explantation (see my explantation handout). However, the problem with explantation is that it is
thought to stir up a reaction against silicone and patients often see a worsening of their symptoms
which may last up to 3 years. Prof Shanklin tells me that reactions against silicone are medicated
by T cells and interleukin 2. He has been trying Plaquenil 200mgs twice daily for 90 days before
surgery and believes this damps down the T cell activity and prevents this post operative flare.
Plaquenil is a standard immunosuppressive drug used to treat rheumatoid arthritis and systemic
lupus erythematosis. It is a fairly benign drug and it is felt that for short term treatment no special
monitoring is required - see “plaquenil sheet”.
Explantation needs to be done by a skilled surgeon aware of the need not to rupture the capsule
inadvertently. Furthermore, the scar capsule also needs removing because it will be impregnated
with silicone. Ask to see the implant after surgery and don’t allow the surgeon to make up an
excuse. I had one patient who was told the implant was removed intact, but it was “scrubbed” to
make it look better and ruptured in that process, therefore it was not available to be seen!
The CFS side of things I treat in exactly the same way as I treat all my other CFS patients with
fatigue caused by viral infection or pesticide poisoning or whatever. Namely rest, nutritional
supplements, elimination dieting, magnesium injections where appropriate (blood test needed),
B12 injections, avoiding chemicals, etc. For further information please send me £10 for my 90
page handout.
Second Generation Effects
There is every reason to expect silicone to cross the placenta into the unborn child. The effects of
this are uncertain. Prof Shanklin has looked at a group of 190 women who had babies before and
after their implant. There were 127 pre-implant children of which 100 were in good health, 27 in
fair health (minor transient problems) and none sick. This compares to 252 post-implant children,
of which 78 were in good health 81 in fair health with 93 WHO WERE MORE SERIOUSLY
ILL (compares to none in the pre-implant group!). This experience certainly accords with what I
am seeing in my patients. However, I would like to repeat this research in all my patients and
hope to attract some modest funds to allow me to do this. I would do it myself if I had the time,
but I don’t. I would need to employ somebody short term to contact women. Any volunteers?
Information handouts: Plaquenil, explantation, reporting sheet for adverse reactions
THE SILICONE DEBATE - OXFORD 98
In September 98 I organised a debate to discuss the silicone issues in Oxford. The motion was:
“This house recognises the existence of a new iatrogenic disease, siliconosis, which arises as
a result of surgical implantation of silicone either by injection or in breast implants”
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Proposed by Dr Henry Jenny, California, Consultant Plastic Surgeon, author of “Silicone-Gate,
the Scandal Behind Breast Implants” and inventor of the saline filled implant which he
developed after finding that his patients were damaged by silicone leaking and migrating
silicone.
Seconded by Dr David Smalley, Tennessee, who has developed immunological tests for
siliconosis in breast implant recipients and their children.
Opposed by Dr Judy Evans, Plymouth, UK Consultant Plastic Surgeon, who regularly uses
breast implants in her everyday surgical practice and is convinced of their safety.
Seconded by Professor Elizabeth Connell, who served as chair of the American FDA which
banned breast implants from routine use in 1992. Subsequently she became a well known voice
for The Advancement of Sound Science Coalition (TASCC), which is trying to reverse the FDA
decision.
Chairman: Professor Jonathan Brostoff, Professor of Allergy and Environmental Health UCL
Medical School, Director of Centre for Allergy Research, Director Diagnostic Immunology
Laboratory.
This is one of the world’s greatest health controversies involving 450,000 women currently
taking legal action
The Issues
Nobody doubts that silicone leaks out of implants. The question is, does this cause damage? Is
silicone completely inert, or is it biologically active? Does it cause autoimmune disease or a new
disease unique to silicone which has yet to be recognised by the medical establishment? Or are
the 450,000 women who claim they have been damaged simply jumping on the legal bandwagon
in order to claim compensation? Disagreement rages over rupture rates and interference with
early detection of breast cancer. We need to find out why silicone implants are still used in UK
but have been banned in the USA, Canada, France and Japan and have never been licensed in
Australia.
 In July 1998 the British Independent review group made up of 15 male doctors, headed by
Prof Roger Sturrock cleared silicone and recommended its continued use in plastic surgery.
 Two weeks later, the USA National Academy of Sciences meeting described high rupture
rates and found new evidence of the immune effects of silicone to support a continuing ban on
silicone.
We have two august medical bodies coming up with completely different opinions. So who is
right?
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On the night of the debate the two speakers, Judy Evans and Elizabeth Connell, failed to turn up
because I suspect they recognised that their practice was indefensible. Judy Evans pleaded ill
health in her husband, Elizabeth Connell gave no excuse.
I subsequently I attempted to organise another debate in conjunction with the British Society of
Plastic Surgeons. I asked David Sharpe, the president, to oppose the above motion and choose his
own second. However, he did not pick up the gauntlet!
Carbon Monoxide Poisoning
The symptoms of CO poisoning are the same as CFS namely physical and mental fatigue,
weakness, susceptibility to infections, muscle pain and so on – furthermore they may continue for
several years after the cause has been identified and removed, just like OP poisoning. It has been
estimated that 1 in 20 homes with gas heating had been affected in some way by CO poisoning.
Diagnosis of acute CO poisoning can be made by doing a blood test for carboxyhaemoglobin
levels. This has to be done within 3 hours of exposure or nothing will show.
Further information from Sue Jaffer and Debbie Davis CO Support 25 Swarcliffe Road Leeds
LS14 5LE.
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MISCELLANEOUS INFORMATION
CFS Checklist
Is the diagnosis right? Don't forget important treatable causes of fatigue such as thyroid
disorders, anaemia, Addison's disease (all diagnosable by simple blood tests). Has serious
pathology been excluded? eg cancer, MS, autoimmune disorders
Rest - 80% rule, pacing, mental and physical rest.
Get organised. Accept help. Arrange for deliveries to house. Delegate work.
Sleep - quality sleep is essential to life. Don't be afraid to use tablets to restore the normal
day/night diurnal rhythm.
Prioritise. List the 10 most important things in your life, then ignore the last five. You can't do
everything.
Supplements - it takes at least 6 months for body stores to replete. Supplements are for life.
Avoid infections where possible. At the first sign of a cough, cold or sore throat use vitamin A
(not if pregnant), C, zinc, selenium and propolis.
Diet. You are what you eat, but everybody is different. Everything in moderation but use as wider
variety of quality foods as possible. Avoid sugar, "junk foods". Avoid any one thing in
excess.
avoid caffeine after 4pm - it will interfere with sleep. Don't drink tea at meal-times - it
blocks absorption of trace elements.
use mineral water to drink - at least 2 pints daily
eat salt, ideally a mixture of sea salt and pansalt (magnesium, potassium, sodium salt)
eat foods as raw and unprocessed as possible.
organic foods where possible
use beans (flagolets, chick peas etc) hot and cold in salads to increase variety and fibre.
They can be bought in bulk and store well.
Get magnesium levels checked. ?magnesium supplements/injections.
Painkillers. Low dose antidepressants.
B12 injections should be tried at some stage.
Elimination diet. Grains (wheat barley, rye oat) are the commonest allergic
cause
of
fatigue.
Chronic low grade undiagnosed infection - helicobacter pylori, pelvic infections, chronic
prostatitis, skin and nail infections.
Avoid female sex hormones. The Pill and HRT worsen CFS in the long term and certainly
predispose to getting CFS because they suppress the immune system and induce
nutritional deficiencies.
Hyperventilation can cause fatigue. Often driven by food intolerance and low
magnesium levels. Helped by relaxation techniques.
Hormonal disturbance : Adrenal stress index test, thyroxine levels, hormone studies
Gut symptoms. Getting gut symptoms right is central to getting the CFS right. Consider gut
fermentation, helicobacter pylori, gut parasites (eg symptoms following travel abroad),
food intolerance, lactose intolerance, specific carbohydrate diet.
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Multiple chemical sensitivity. Suspect if symptoms better out of doors, better in the summer,
better away on holiday. Do chemical clean up. Eat organic where possible.
Chemical poisoning. Exposure at work to organophosphates (farmers), dog and cat flea
treatments, human head lice treatments, Vapona fly blocks/sprays, woodworm treatments.
Contaminated water. Carbon monoxide poisoning. Any silicone implants?
Consider enzyme potentiated desensitisation (EPD).
Healing. Local healer can be found from 01891 616080. Consider Seka Nickolic expensive but effective. Contact Hale clinic 0171 637 3377.
Long standing illness often results in depression. Low dose antidepressants
can be helpful.
St John’s Work works for depression but be careful – two of my patients have been made much
worse using 900mgs a day. It flared all their CFS symptoms. Start off with 300mgs and build up
slowly.
Everybody gets better from CFS in a different way - often a combination of the above. Tackle
your illness from every angle you can. Always have a plan. Always keep a light at the end of the
tunnel. Keep talking with other sufferers - they will give you ideas and inspiration.
CFS Ability Scale
The fatigue in CFS is both mental and physical. For some sufferers, the physical is the greatest
burden and for others, the mental fatigue is most troublesome.
100: No symptoms with exercise. Normal overall activity. Able to work or do house/home
work full time with no difficulty.
90:
No symptoms at rest. Mild symptoms with physical activity. Normal overall activity
level. Able to work full time without difficulty.
80:
Mild symptoms at rest. Symptoms worsened by exertion. Minimal activity restriction
needed for activities requiring exertion only. Able to work full time with difficulty in
jobs requiring exertion.
70:
Mild symptoms at rest. Some daily activity limitation clearly noted. Overall functioning
close to 90% of expected except for activities requiring exertion. Able to work/do
housework full time with difficulty. Needs to rest in day.
60:
Mild to moderate symptoms at rest. Daily activity limitation clearly noted. Overall
functioning 70% to 90%. Unable to work full time in jobs requiring physical labour
(including just standing), but able to work full time in light activity (sitting) if hours
flexible.
50:
Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity;
overall activity level reduced to 70% of expected. Unable to perform strenuous duties,
but able to perform light duty or desk work 4-5 hours a day, but requires rest periods.
Has to rest/sleep 1-2 hours daily.
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40:
Moderate symptoms at rest. Moderate to severe symptoms with exercise or activity.
Overall activity level reduced to 50-70% of expected. Able to go out once or twice a
week. Unable to perform strenuous duties. Able to work sitting down at home 3-4 hours a
day, but requires rest periods.
30:
Moderate to severe symptoms at rest. Severe symptoms with any exercise. Overall
activity level reduced to 50% of expected. Usually confined to house. Unable to perform
any strenuous tasks. Able to perform desk work 2-3 hours a day, but requires rest periods.
20:
Moderate to severe symptoms at rest. Unable to perform strenuous activity. Overall
activity 30-50% of expected. Unable to leave house except rarely. Confined to bed most
of day. Unable to concentrate for more than 1 hour a day.
10:
Severe symptoms at rest. Bed ridden the majority of the time. No travel outside of the
house. Marked cognitive symptoms preventing concentration.
0:
Severe symptoms on a continuous basis. Bed ridden constantly, unable to care for self.
CFS Psychological or Physical?
This seemed such a stupid question that I never bothered to consider it. I estimate I must have
now seen over 1,000 patients with CFS and it is clear CFS is primarily a physical disorder. It is
only when patients have been ill for several months and been told by their physicians that nothing
is wrong they get secondary psychological problems. The only place where CFS does not exist is
in the brains of small minded doctors.
The reason the "physical or psychological" debate continues is because the usual tests for
pathology come up showing normal results. GPs find ill patients, do the usual screening tests
which come up normal and feel this allows them to turn round to patients and conclude there is
nothing physically wrong. If however the screening tests included SPECT scans, sensitive tests of
the hypothalamic-pituitary-adrenal axis, T cell subsets, biopsies to look at mitochondrial
abnormalities, enterovirus sequences in muscle and brain, trace element levels, vitamins,
essential fatty acids and amino acid profiles then lots of abnormalities would be found. Doctors
would diagnose serious metabolic and hormone problems and patients would be taken more
seriously.
I believe the fundamental problem in CFS patients is that they have lost their ability to respond to
stress, be this physical, mental, nutritional, emotional, infectious, financial etc. Our systems can
be likened to a car - when we are pottering we are in first gear. But as soon as the pressure goes
on we need to move up a gear, or two or three gears, or occasionally into overdrive, to cope with
the situation. We can do this by releasing stress hormones from the hypothalamus, pituitary and
adrenal glands producing adrenaline, cortisol, sex hormones etc. This effort can be sustained for
a short length of time but eventually the person must "recharge the batteries" with good food,
holidays, fresh air and sleep.
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An CFS patient is burnt out - usually by overstressing him/herself with work, sport, family
commitments combined with insufficient rest, poor quality food, allergies, acute or chronic
infections, excessive alcohol/smoking/sugar, chemical overload etc. He/she has lost the ability to
produce stress hormones and is stuck in first gear. Increasing stress (accelerator pedal) simply
makes the engine scream without going faster. Furthermore the patient often does not sleep well
and this compounds the problem. I could stock a good Olympic team with CFS sufferers - top
athletes stress themselves hugely and put themselves at greater risk of getting CFS.
With any illness there is a psychological component, but with CFS this is secondary to a physical
illness. I am always amazed how well adjusted are my CFS patients and depression is not a
common feature. The difference is that CFSs want to do things, but if they do they feel ill. They
also tend to wake late. With depression, patients don't want to do anything, but if you push them
to exercise, they actually feel better. Usually they have early morning wakening. I suspect this is
why the "stimulating" antidepressive drugs seem to make CFS worse - they increase the desire
without improving the performance and therefore worsen the frustration.
Rec Reading: Hans Selye "The Stress Of Life", McGraw-Hill Book Co, first published 1956,
ISBN 0-07-056212-1
SPET Scanning For Myalgic Encephalitis
January 1994
Dr. Costa at the Department of Nuclear Medicine, Middlesex Hospital, London, has used a new
technique to investigate the function of the brain. It is called SPET (Single Photon Emission
Tomography). The marker is a labelled technetium compound (Ceretec), which is injected
intravenously. It readily crosses the blood brain barrier because it is markedly lipophilic and
deposits itself in actively working neural tissue. Special scanning results in beautiful colour
pictures, which are horizontal slices of brain, accurately reflecting blood flow and hence neural
activity. The intensity of colour can be measured and compared with brains of normal people and
brains of those with other diseases.
There is no doubt SPET scans are a breakthrough in the diagnosis and recognition of CFS as a
real illness. They consistently show reduced perfusion to all parts of the brain, especially frontal,
temporal and parietal lobes and the deep basal ganglia. However, what is unique to CFS sufferers
is very poor perfusion of blood in the brain stem. Whilst other diseases such as dementia and
depression show reduced blood flow to the thinking areas of the brain, brain stem perfusion is
normal.
The brain stem links the motor and sensory cortex, the thinking areas of the brain and the areas
concerned with consciousness to the physical parts of the body. It also modifies and adjusts the
signals as they pass to and fro by the reticular formation with effects on sleep, arousal,
movement, balance, memory etc. It is hardly surprising that CFSs have such a wide spectrum of
symptoms since many bodily functions are going to be affected.
We also know that viruses can be spread via neurones. Furthermore, viruses can live within cells
and affect their output of hormones and neurotransmitters with obvious knock on effects.
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I personally do not recommend that all CFSs need a scan to diagnose their illness, since a
clinical diagnosis can be made by an experienced doctor. However, if the diagnosis is in doubt,
either through genuine confusion or because of sceptical doctors, then a SPET scan does provide
objective and acceptable evidence.
Anybody can be referred directly to Dr. Costa by their GPs to the Middlesex Hospital. Such an
"extra contractual referral" is acceptable because there are few centres which have SPET scans (I
do not know of another). The cost is £270. If anybody feels they would like to have a SPET scan
done, then of course I can refer them directly to Dr. Costa, but that person would have to pick up
the full bill. I would like to emphasis that this is still a research tool used in the diagnosis of
CFS. At present I cannot see how it would influence management of individual patients, but
maybe it can be used to investigate the effects of various drugs on cerebral blood flow and
function.
THE PLASTIC ROSE SYNDROME!
A man walks into an allergy clinic complaining of allergy to roses. The doctor puts a plastic rose
under his nose. The man sneezes. Is this a psychological or physical reaction? It is both. The new
buzz word to explain this is "psycho-neuro-immunology" (of the mind, the physical brain and the
immune system).
If you take a rat and scratch his skin, then rub in bacteria, he will develop inflammation. If you
repeat this daily, he will develop inflammation every day. After several weeks of this, you just
scratch the skin, but don't rub in bacteria. The rat will develop inflammation just as if bacteria
had been rubbed in. The immune system has learned to expect bacteria and reacted appropriately.
The cells of the immune system are very similar to brain cells. They use similar neurotransmitters
and are responsive to hormones. They can plug in to the nervous system at numerous sites in the
body. They are intelligent, can recognise foreign substances and make decisions about whether or
not to attack such foreign substances, and/or call in help from other cells. Indeed they can be
thought of as brain cells which are not confined to the brain, but wander all over the body.
The first two examples above show us how these 'mobile brain cells' can be taught in exactly the
same way as 'fixed brain cells'. Clearly there must be channels of communication between our
fixed brain cells and our mobile brain cells (ie the immune system). The question is, how can we
communicate with our own immune cells when they start to go wrong? This is very important for
CFS sufferers in particular, because it seems likely that CFS is, at least partly, a disorder of the
immune system.
Unfortunately our immune cells don't appear to understand English! However we can
communicate with our subconscious using "the mind's eye". To make changes we have to
positively visualise, imagine and believe that changes can be made, and the brain will sort out for
itself how to go about effecting these changes.
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One example of how the brain works is illustrated by a group of students who, in 1953 were
asked to write down their 'goals and ambitions' in life. Only 3% had positive goals they wanted to
achieve. When followed up 20 years later, that 3% were earning more money than all the rest put
together. That 3% had a clear idea in their mind's eye what they wanted to do and where they
were going, believed they could do it (with the confidence of youth), and achieved their goals.
Getting people better from CFS is like solving a jigsaw puzzle. All the right pieces have to be in
the right place at the same time. It may well be that we don't know all the right pieces. However
the 'will' to improve is a crucial part. I firmly believe that we all have an ability within us to help
ourselves get better - we have to 'tap in' to this resource.
Not only must one have the will (and a feature of CFS seems to be plenty of will!), but this desire
must be:
1. Clearly communicated at the subconscious level (talking to your subconscious).
2. There must be no blocks to this message getting through (identifying the blocks).
Talking To Your Subconscious
One effective way seems to be positive visualisation. In this technique, you have to imagine how
you want yourself to be, using small, realistic steps at a time. For example initially you have to
imagine yourself waking up and feeling good, enjoying the feeling of walking and moving,
reading or writing without fatigue, noticing the little things which are happening and interpreting
them as signs of improvement. The subconscious does not seem to respond to negative images.
i.e it is no good thinking "I don't want to be ill". You have to have a positive idea in your mind as
to how you wish to be. If you can think this sufficiently strongly, the message will eventually get
through to the subconscious and the immune system and this will act to get you better. The more
clear the message and the longer it lasts, the more effective it will be. Everybody has to work out
their own particular message. This may change with time as you have new ideas and improve and
need another image of yourself. Keep telling yourself how good you are.
Identifying The Blocks
Some people clearly want to get better, but there is some deep seated reason, some unresolved
psychological "pain" which is blocking possible improvement. Very often these patients don't
know themselves they have a block about getting better, and it make take a great deal of thought
and honesty with themselves to identify 'blocking factors'. For example once patients become ill
and unable to care for themselves, they lose a certain amount of responsibility for their own lives.
The thought of having to take responsibility again and the worry of not being 'reliably well' may
provide a subconscious block to improvement. Psychologically they cannot afford to get better.
These people can be thought of as having a 'psychological disability' which is just as disabling
and difficult to deal with as any physical disability.
A common psychological pain is for a person not to feel loved. Until the reason for that lack of
love can be worked through psychologically through understanding how the situation arose in the
first place, he/she will never be able to change to a "from now on I will feel loved" position.
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Making Changes
Our personal identity is very important to us. We have certain traits and personalities which we
are resistant to changing. For example a naturally jolly person is expected to be jolly by other
people and is a cause for comment if he is grumpy. It is difficult for him to change to a grumpy
person. Similarly the reverse is true. Mr Scrooge made the change and it is cause for comment
every Christmas! But it must have been very hard for him - much easier to remain grumpy.
Beliefs
Unless you believe deep down you can make the change, you never will. The best form of
encouragement is positive feedback. If you see yourself getting better, you will think more
positively and improve further. See every little change as a sign of improvement.
How To Find Help - One of the big problems for CFS sufferers is money - often they simply do
not have the financial resources to pay for help. However professional psychological help could
prove a good investment. Even an occasional consultation may put you on the right lines to help
yourself further. Choose your therapist carefully - for example it is no good having somebody
who does not believe CFS exists! Psychotherapy is partly about communicating with the
subconscious. Hypnotherapy seems to bypass the conscious mind with all its blocks and
inhibitions and 'plug in' directly to the subconscious mind.
Neurolinguistic Programming
I have been reading about NLP (neurolinguistic programming) and I believe this could be used as
a quick 'do it yourself' at home technique. There are several books which could be used, but I am
familiar with "Core Transformation" by Connie Andreas, from Anglo American books, tel 0994
230400, cost £18.95. This gives actual examples of how NLP can be used to treat a wide range of
problems, on your own at home or with the help of another person (who needs no special
training).
However a psychotherapist friend, RG, pointed out to me that patients are unlikely to find all the
answers in one book. He suggests the following are useful:
Love, Medicine and Miracles - Bernie Siegel
You Can Heal Your Life - Louise Hay
Quantum Healing - Deepak Chopra (and others by him)
ME and the Healer Within - Nick Bamforth
Climbing Out of the Pit of Life - Dr Darrel Ho-Yen. Dr Ho-Yen has great clinical experience of
treating CFS patients and describes how to help people recover from the "pit of life" - death of a
loved one, severe illness, financial ruin, public humiliation etc. He describes the LADDER
(lifeless, anger, denial, disgrace, endeavour, renewal) of recovery. The book offers clear practical
solutions to each problem designed to be read by individuals with short concentration spans and
reduced memory. Cost £10, cheques to Dodona Books, from The Old Schoolhouse, Kirkhill,
Inverness, IV5 7PE.
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RG goes on to say "Finally this talking to the subconscious/unconscious can be taken to extreme.
We could become desperate searching for the right technique to get the message across to our
dammed, stupid, stubborn unconscious! Whilst I feel it can be productive telling our unconscious
what to do, I think we should also be listening to it. If we listen more, perhaps we will learn what
is wrong with our bodies or our lifestyle."
"I believe we have enormous inner wisdom that we need to contact if we are to be truly happy
and healthy. Using various techniques, we need to dig deeper and deeper, to connect with the
unconscious, to connect with that inner wisdom. Sometimes that inner wisdom reveals what is
wrong inside our bodies. Where our inner wisdom is far more useful in my view is in revealing
what is wrong in our minds, in our hearts or spirits, what is wrong with the way we live and
love."
He also gives the following recommendations about finding a therapist.
1. Find someone who has been personally recommended by someone whose opinion you value.
OR ask a 'professional carer' such as a GP, community psychiatric nurse (NHS CPNs can be
contacted through your local Special Needs Services, see yellow pages) or even your local vicar
for a recommendation.
2. Whoever you see, try to have an initial consultation with your therapist to see if you are both
"compatible" ie you get on well, you are clear what therapy entails, how long sessions last, how
long is a course of treatment, cost etc.
3. Discuss with the therapist if you are not happy about therapy at any stage and, if necessary go
elsewhere.
Back to me! I know I am not good at treating the psychological aspects of CFS. However I do
know they are very important Hypnotherapy can be useful. I recommend Dr Maurice Loveday, 33
Park Street, Worksop tel 01909 487509.
Heather Sharpe sums it up: Accept ~ Adjust ~ Achieve.
DETOXIFICATION
June 1994
I have just returned from the BSAEM/BSNM conference in London where I have been listening
to Professor William Rea, Dallas, Texas. He is considered to be the World Authority on chemical
sensitivity. His observations of patients fit exactly with my own, and I am increasingly finding
that my "problem patients" are the ones with chemical sensitivity and/or overload.
He tells me that the US chemical industry alone produces and releases into the environment
about 900lbs of chemicals per American per year, which inevitably gets into water, food chains,
the atmosphere and into humans. Many of these dangerous chemicals are fat soluble and they
concentrate in fat in the body and also the brain. These chemicals interfere with normal metabolic
processes and cause symptoms such as "brain fag" (inability to think clearly, poor memory,
difficulty concentrating), fatigue and malaise (i.e. you feel ill) as well as many others.
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Their effect on nervous function can be judged by a simple test, known as "Romberg's". This is a
test of mild nerve damage or dysfunction. Stand with your feet together and shut your eyes.
Those people with poor or sluggish nerve control (possibly caused by chemical toxicity) will fall
over. It should be possible for the normal person to stand on one leg with their eyes shut,
although I confess I wobble about when I try this!
Chemical sensitivity can be tackled to a certain extent by EPD (enzyme potentiated
desensitisation). However chemical overload is more difficult. There are 3 ways to go about
tackling this: reduce the load, improve metabolism and increase excretion.
1. Reduce The Load
The "Golden Rule" is that if you can smell it, it could be causing problems. Most people with
chemical allergy have a better sense of smell that the normal person. Buy Richard Mackarness's
book "Chemical Victims", see my "chemical sheet".
2. Improve Metabolism
The problem chemicals are fat soluble. For many of these to be excreted they must be changed in
the liver to make them water soluble so they can be passed out in urine. This process is
dependant on vitamins and minerals. Taking nutritional supplements will speed chemical
detoxification. The most important is vitamin C (take to bowel tolerance - at least 2gms daily,
possibly more). WR also recommends reduced glutathione 80mgs (from BioCare - cost £11.36
for 90). Another important nutrient that plays a major role in the body’s detoxification of harmful
substances and drugs is taurine. It is an amino acid found in animal protein, organ meats and
invertebrate seafood and is often deficient in vegetarians.
3. Increase Excretion
There are several ways of doing this:
i) Drink plenty of clean water (eg spring water).
ii) Eat "clean" foods and don't allow yourself to get constipated (vitamin C helps). People often
tell me they feel "off" when their bowels stop up.
iii) Sweat - these is an important method of elimination. Many patients who are chemically
sensitive suffer from excessive sweating, often at night.
iv) Increase the blood supply to fats to mobilise them into the blood stream to allow them to be
excreted. Initially this makes you more ill since they are being released into the bloodstream.
This may be why my CFSs tell me that a hot bath makes them feel worse. Conversely this may
explain why a cool bath (as reported in ME Action) affords improvement, but it is only
temporary.
However it is no good mobilising chemicals if they don't have a clean atmosphere to move out
into. Mobilisation simply allows chemicals to move, but if you are sitting in an atmosphere with
lots of chemicals, you will simply allow more to move into the body. WR uses a specially
designed ceramic lined "dry heat" sauna (wood saunas exude pine turpenes), with clean air
blowing though to detoxify his patients. He also gives them nicotinic acid (vitamin B-3 95
available from Lamberts product number 8048, cost £2.51 for 90) ) 100mgs or more to induce
flushing which increases blood flow and therefore improves blood supply to fatty areas.
A more recent paper published in the Journal of Nutritional Medicine describes his dry heat
sauna, followed by massage, lots of clean water to drink and back into the sauna. In the absence
of dry heat saunas in UK I would think that a spa bath would have the same effect. There are
plenty of spa towns in UK - feedback required please!
Suggested Detoxification Regime
Morning - BioCare multivitamin/mineral, vitamin C 2 grams, nicotinic acid 100mgs, glutathione
80mgs, Efaplex. Breakfast, 1 pint of spring water to drink.
- very hot bath for 30 mins - as hot as you can stand to induce sweating. Window open, in
chemically free bathroom (ie no cleaning agents, sprays, scented soaps/shampoos, bath oils,
deodorants, aftershaves, powders, cosmetics, perfumes etc) for 30 minutes. Towel dry and rest
for 30 minutes to recover. If you can persuade someone to give you a light massage to improve
circulation, so much the better.
Drink 1/2 pint spring water.
Midday - vitamin C 2 grams. 1/2 pint spring water.
Evening - BioCare multimineral complex, vitamin C 2 grams, nicotinic acid 100mgs, efaplex, 1
pint of spring water.
Second hot bath as above.
If you don't improve, add in magnesium EAP (BioCare), and allow extra salt (I prefer Pansalt, a
mixture of potassium, sodium and magnesium chlorides). Taurine is an amino acid which allows
detoxification. Take up to 2 grams daily.
Foods - eat onions and garlic which are rich in sulphur which helps detoxification.
Don't allow yourself to get cold.
I suggest building up to this regime slowly. The combination of a hot bath and nicotinic acid may
make you feel faint - if it does, lie down quickly BEFORE you fall over. This regime is rather
experimental and I would expect it to make you worse initially, but I welcome any comments or
feedback.
Supplements from BioCare, tel 0121 433 3727, my patients qualify for trade prices.
Clean Air - This is important for some people who are very sensitive to chemicals. I recommend
they invest in an air filtration system. Mountain Breeze is a reputable company producing air
filters which removes 99% of airborne pollutants and contains an activated carbon filter to
remove odours. It also contains an ioniser which some people find of benefit. Air filters are
available through Boots, John Lewis and many others. If you have problems, contact the
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company directly on 0695 21155. The air system F400 costs £69.95. Don't get the system with
fragrance added!
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The Pill and HRT
A question that most of my female patients ask me at some stage is - what about the Pill and
HRT? In the last few years I have become increasingly unhappy about prescribing the Pill and
HRT for my patients and I am now at the stage when I actively discourage patients from using
either. I think my reasons for doing this are best explained in the following summary I did:
Dr Ellen Grant: The effect of exogenous sex hormones on women's health including increases in
breast, endometrial, ovarian and cervical cancer, and sexually transmitted diseases". Recommended reading: Sexual Chemistry - Dr Ellen Grant, Cedar, ISBN 0-7493-1363-3 (summary prepared by Dr Sarah Myhill)
The combined oral contraceptive Pill has become widely accepted as a safe contraceptive for
long-term use, and when it is being administered, usually the only issue up for discussion is its
efficacy in preventing pregnancy. Dr Grant argues that its use causes a whole range of clinical
problems. These side effects are an extension of physiological actions and are therefore dose
dependant. For the same reason, it is irrelevant whether the hormones are of natural origin or
have been artificially synthesised, are taken orally or transdermally.
Corticosteroids and anabolic steroids are rightly used with caution. The female sex hormones in
the Pill and HRT are related compounds with similarly profound and wide range of activity.
1. Female sex hormones stimulate target organs resulting in increases in all hormone-dependent
cancers particularly breast and cervical cancer. There is a clear link between unopposed
oestrogen use and endometrial cancer.
2. They affect the immune system depending on proportions of progestogen (which tends to
suppress) and oestrogen (which tends to stimulate). Grant argues that the immuno-dysregulation
caused in this way has contributed to the increasing allergic diseases we now see.
3. They interfere with trace element metabolism, particularly lowering zinc and magnesium
levels as well as disturbing B vitamins and essential fatty acids levels. Low zinc is associated
with anorexia, birth defects and dyslexia which, argues Grant are diseases exacerbated by the
Pill. Low magnesium is associated with cardiovascular disease, the commonest cause of death in
UK.
4. They cause mental disturbances - oestrogens tend to cause euphoria (and may be addictive),
progestogens tend to cause depressive symptoms. Falling levels of both hormones cause
depressive symptoms - this occurs naturally in PMT, post-natal depression and menopausal
depression. Taking the Pill or HRT exacerbates these natural swings so there is a higher
incidence of depression and suicide in Pill takers. This effect may be mediated by abnormal
zinc/copper ratios.
5. They cause dilatation and/or hypertrophy of blood vessels leading to thrombosis (pulmonary
embolus) and increased vascular disorders (hypertension, coronary artery disease, stroke). Again
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this is a physiological effect which can be seen in the veins and arterioles of the uterus, but is
exacerbated when used in the pharmacological levels used in the Pill and HRT.
6. The Pill is used as a first-line contraceptive in young women. This means condoms are rarely
used and women are more likely to acquire sexually transmitted diseases.
7. A combination of the immuno-dysregulation, plus hormone stimulation of the cervix, plus
exposure to sexually transmitted diseases with chronic inflammation and carcinogenicity of
papilloma virus has led to an epidemic of aggressive cervical cancer in young women.
8. Acute pelvic inflammatory disease may lead to chronic pelvic infection and infertility.
The main reason why these disorders have not become more apparent in clinical trials is because
the women who developed side effects early on in the trial stopped taking the Pill. This meant
that the women who continued on the Pill were pre-selected because they were resistant to the
malign effects of the Pill so the true overall long term side-effects of the Pill and HRT have been
underestimated. This view is now receiving considerable support particularly from the Dutch
epidemiologists.
Breast Cancer
We know that breast cancers are hormone dependent cancers. A major line of treatment after
excision is to remove oestrogen and progesterone from the body - either by using the antioestrogen Tamoxifen, or surgical castration. Breast cancers arising in young women carry a
worse prognosis because their levels of sex hormones are higher. Breast cancers arising during
pregnancy develop rapidly, like an abscess, driven by high levels of oestrogen and progesterone.
So well established is this principle, that trials are being considered to treat women with a poor
family history of breast cancer with the anti-oestrogen Tamoxifen as a prophylactic, to reduce
their risk of this disease.
A logical extension of this principle is that giving exogenous oestrogens will increase the
incidence of breast cancer, and reduce the age at which breast cancer develops. There is no doubt
that breast cancer rates are rising, but is this due to the pill and HRT? Is there a demonstrable
link in the epidemiological studies? Dr Grant believes there is.
She argues that the published epidemiological studies are flawed because they do not include all
the women that were ever started on the Pill. This is crucial because the women who dropped out
early did so because of side effects. In her book "Sexual Chemistry" Dr Grant presents
compelling evidence to show that these women are in the very group who would be most likely
to develop breast cancer. The same applies to cervical, uterine and ovarian cancer. The reasons
she gives are well understood by doctors who are practicing a nutritional approach to medicine.
The women who get side effects are those with an inefficient immune system (tendency to
develop food intolerance) and poor nutritional status (particularly poor levels of B vitamins, trace
elements especially zinc and magnesium and essential fatty acids) and therefore more likely to
develop breast cancer in the first place.
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This problem of pre-selection has been addressed by Vandenbroucke et al (see enclosed). He
conducted a review of the follow up studies reported in three recent meta-analyses to determine
the effect of oestrogen therapy on both total cancer and cardiovascular disease. He used "total
cancer" to look for a "healthy cohort effect". He found a 'protective' effect on total cancer of
almost 20% which led him to conclude that since "the beneficial effect of oestrogen on total
cancer is unlikely to be real because female reproductive cancers are, if anything, increased by
oestrogens, and for all other cancers no effect is known at present", therefore "the meta-analyses
are based on the results of observational studies and can be influenced by unintended selection
of relatively healthy women for oestrogen therapy."
Vandenbroucke has clearly demonstrated that pre-selection has taken place and therefore such
retrospective trials are not just invalid but misleading.
Any trial must include all women who have ever been started on the Pill or HRT to be fully
valid. However the difficulty here is that by the early 1980s, over 90% of young women have
been started on the Pill. This means there are no true control subjects and so setting up such a
trial is fraught.
Homo Sapiens Chemicalis (1) - more new ideas!
(May 1995)
We are all very different. No two people are the same in looks, sound, personality, temperament,
moods, physical shape, mental ability, etc etc. These differences also include our chemical make
up and internal biochemistry. We all have differences in our internal organs, brain chemistry,
immune systems, liver and kidney functions etc etc. It is this variability within homo sapiens that
allows us to adapt to changes in the environment in which we live. Humans are a hugely
adaptable species which is probably why we are one of the most successful species on Earth
today. We can make changes to our lives which allow us to cope or adapt to changes in our
environment.
If we do not make such changes, then we becomes dis-eased, or ill. At present, the environment
of Western man is changing extremely quickly in evolutionary terms. Probably the single most
important change is in our chemical environment. We are being exposed to a whole range of new
chemicals. Most of us have defence systems which can clear these new chemicals from the body
and so they don't poison us. However some people are unable to clear them quickly and so they
accumulate in the system. The organs most affected in the short term are probably the brain and
the immune system. In the longer term these chemicals are deposited especially in fatty areas
such as the testes (accounting for falling sperm counts), breast (partly accounting for rising breast
cancer) and brain (accounting for the rise in neurodegenerative disorders such as dementias,
Parkinson's disease etc).
To protect ourselves from the effects of toxic chemicals we have several lines of defence.
However these defences are dependant on good nutrition. Again we differ greatly in how much
we need - for example people with viral infections have a much greater requirement for vitamin
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C than people in rude health. Vitamin C is the bullet that the immune system needs to shoot
viruses. Similarly different people have different requirements for other vitamins, trace elements,
essential fatty acids, amino acids etc. This makes a nonsense of the "Recommended Daily
Amounts" of vitamins and trace elements as we all have different requirements which also vary
with age, stress, disease, mental state, time of year, time of the month and so on.
When you have CFS, this means that the system has failed to adapt to the stresses thrown at it. I
could give anybody CFS if I stressed them enough. I would wait until they got 'flu, make them
run a marathon, stop them from sleeping, feed them junk food, poison them with a few pesticide
sprays, then arrange a divorce or death of a loved one followed by a house move. Nobody could
adapt to that sort of stress, (but you would be surprised how often people do stress themselves in
these ways!). These are all the things that I see as the "last straw that breaks the camels back" and
tip people into full blown dis-ease. Treating CFS is all about identifying those stresses and
improving the body's ability to withstand them.
Ref: Steven Davies, Editor Journal of Nutritional Medicine 1995.
Nutritional Treatments For Arthritis
November 1998
Arthritis simply means pain in the joints. There are two types: inflammatory and degenerative.
All types of arthritis will be help by evening primrose oil and fish oil. They feed into the series of
immune modulaters which tend to reduce inflammation. I would try three months of 4 capsules
(2 grams) of EPO and 4 capsules (2 grams) of fish oil in all patients.
Pain is Nature’s way of making you rest a joint. Therefore taking painkillers (such as
paracetamol and co-proxamol)and anti-inflammatory drugs (such as aspirin, ibuprofen,
indomethacin etc) will make you use a joint which should be rested and will damage the joint and
accelerate the rate of deterioration. “Indocid hip” is a well recognised syndrome. That’s fine for
someone on the waiting list for a hip replacement…. I think it is reasonable to take pain killers to
help sleep, but not if the joint is to be used.
Inflammatory Arthritis
Examples include rheumatoid, gout, ankylosing spondylitis, Reiters disease, polymyalgia
rheumatica etc. All can be diagnosed by a careful history and blood tests. 50% of rheumatoid
arthritis is due to food allergy, gout needs drugs to reduce serum uric acid levels, ankylosing
spondylitis needs a low starch diet, PMR has to have steroids, etc. I would try elimination diets
(ask for my elemental diet sheet – one month of dieting) for all inflammatory arthritis except
PMR and gout. Arthritis can be caused by anything which is a cause of allergy: inhalants, foods
and chemical sensitivity.
Degenerative Arthritis (or Osteoarthritis)
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This may occurs as a result of inflammatory arthritis and so some of these techniques will apply
to the above group. There are three things which are worth trying for everybody and a proportion
will respond.
1. Boron (a trace mineral). Arthritis is common in countries where there is a lack of boron in the
soil and rare in countries where it is plentiful (see my boron handout). I usually use 9mgs a
day for three months. If there is improvement, the maintenance dose is 3mgs a day. I am able
to supply a boron supplement and the cost is £7 for a month’s supply at 9mgs daily.
2. Cartilage rebuilders such as N acetyl glucosamine or glucosamine sulphate. The early lesion
in all forms of arthritis is destruction of cartilage. Cartilage is the “shock absorber” of joints.
It cannot be seen but is perceived as the space between the joints on X ray. If narrowed, there
is loss of cartilage. The cartilage can be rebuilt. Glucosamine sulphate is widely advertised in
the newspapers, but can be bought from BioCare tel 0121 433 3727, my patients qualify for
trade prices. The usual dose is one capsule twice daily and 60 capsules of N acetyl
glucosamine cost £10.45 (Jan 2000).
3. Antioxidants. Damage to joints is thought to be mediated by free radicals – these are highly
reactive and destructive molecules produced as a part of normal metabolism. Antioxidants
mop these up before they cause damage. I suggest trying anthrocyanadins available from
BioCare (Procydin) three daily, 90 cost £10.80 (Jan 2000). Joints have a very poor blood
supply – if you cut open a joint it is white because there is no direct blood supply. The
oxygen has to diffuse a long way from the blood vessels before it gets into the joint. I suspect
that the reason why cold weather affects joints badly is because the blood supply is reduced
and so the oxygen supply cut off. This causes a build up of free radicals and therefore pain. It
is vital to keep all joints warm!
There is a new drug on the market which holds great promise for all arthritis sufferers. Arthritis
occurs because of damage to cartilage. This damage occurs because the cartilage is attacked by
the body’s own white cells. These (so called) T cells are turned on for many reasons: allergy, free
radicals, immune upset or whatever. The new drug, CMO, turns off white cells. Apparently only
one course of the drug is required to stop the arthritic process, after which the cartilage can then
rebuild itself without being destroyed at the same time. I have not had the opportunity to
experiment with this drug which is available in the USA. If I have any willing guinea pigs, please
let me know, I can send what I have gleaned from the Internet, and try ordering some.
Osteoporosis
Osteoporosis is bone thinning which leads to increased risk of bone fracture. To prevent
osteoporosis we must first understand some bone metabolism.
I start from the old adage "if you don't use it, you lose it". Astronauts are not allowed into Space
for too long because they get severe osteoporosis. The reason? No gravity. It is gravity in your
bones which stops them from dissolving away.
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To prevent osteoporosis, the single most important factor is to put gravity (weight) through the
bones. Bones are made up of little channels which if squeezed by changing gravitational fields
creates a so-called "piezo-electric" effect which stimulates deposition of new bone. As soon as
gravity is off, bone starts to dissolve back into the blood again. Putting a patient to bed causes
osteoporosis. Put simply, if you move up and down (as in walking, jogging, bouncing) you
deposit bone, but as soon as you stop (sitting or lying down) bone starts to dissolve back into the
blood stream. It is no coincidence that osteoporosis largely occurs in thin people. Thin people
have thin bones because there is little gravity going through them to stimulate new bone
deposition.
Nutrition is also vital. Bones are not just made up of calcium. Many other trace elements are
equally important including magnesium, zinc, selenium, boron, chromium and probably others.
We know essential fatty acids are important as are vitamins C, D, K and the B group. In order to
make healthy bones, we need the whole spectrum of vitamins, minerals, essential fatty acids and
trace elements. By taking just calcium it is possible to unbalance other trace elements and worsen
the risk of osteoporosis.
There are two vitamins which are particularly important. The first is vitamin D. Absorption of
calcium from the gut is a vitamin D dependant process. It is not so much a question of how much
calcium is in the diet, but how much can be absorbed from the gut? Once absorbed does it go to
the right place? Without vitamin D calcium could be deposited in the wrong place such as
arteries (hardening) or gall bladder and kidney (stones). The three main sources of vitamin D in
the diet are sunshine on the skin, dairy products and fish oil.
The second important vitamin is vitamin K. This is highly protective against osteoporosis
because it strongly stimulates bone production. Vitamin K is found in green leafy vegetables and
cream cheese. It is usually easily available on prescription as menadiol sodium phosphate 10mg.
The bad news is that should your GP refuse to prescribe it, the cost of a private prescription is in
the region of £50 for 100 tabs. I would, of course, be happy to give you a private prescription for
vitamin K if necessary. Caution: vitamin K is antagonistic to warfarin and should not be taken
with anti-coagulants.
One of the problems of patients with CFSs is that they cannot exercise and therefore are at risk of
osteoporosis. "Rebounding" prevents osteoporosis because the rapidly changing gravitational
fields caused by gentle bouncing on a mini-trampoline stimulates bone deposition.
I do not recommend female sex hormones to prevent osteoporosis. Any benefit is temporary and
bone is rapidly lost when the hormones are stopped. Female sex hormones are associated with
increased risk of cancer, thrombosis, mental disorders and chronic fatigue. Having said that I do
have some patients who cannot stop their HRT because they relapse at once.
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Research done by Professor Cees Vermeer at the Department of Biochemistry, Maastricht
University in Holland shows that vitamin K is essential in healthy bone metabolism and is highly
protective against loss of bone mass. Below is an abstract of his work:
Vitamin K serves as a cofactor in the posttranslational conversion of protein-bound glutamate
into -carboxyglutamate, also known as Gla. Since the vitamin K-dependent step is a
carboxylation reaction, vitamin K deficiency leads to the synthesis of undercarboxylated proteins.
Gla residues are calcium binding groups and are essential for the biological activity of the
proteins in which they are found; undercarboxylated Gla-proteins have a low activity in all cases
their function is known. Vitamin K-dependent proteins are known to participate in three
physiological processes:
a) in blood coagulation (coagulation factors II, VII, IX and X and proteins C and S);
b) in bone metabolism (protein S, osteocalcin and matrix Gla-protein (MGP));
c) in vascular biology (protein S, MGP, and growth arrest specific protein 6 (Gas 6)).
All three bone Gla-proteins are synthesized by the osteoblasts (the bone forming cells) and their
importance became clear about 25 years ago, when it was realized that the use of vitamin Kantagonists (coumarin derivatives) in pregnant women was associated with serious bone defects
in the foetus. Subsequent experiments in animals (rats, lambs) have shown that notably in rapidly
growing (young) bone tissue coumarins interfere with calcium deposition resulting in excessive
and irregular precipitation of calcium salts, bone deformations, growth reduction and severe
osteopenia. Similar effects were observed in MGP knock-out mice. In 1984 it was shown by the
group of Shearer that osteoporotic femur neck fractures were associated with very low circulation
vitamin K levels. Similar data were observed by the group of Delmas. In 1989 data from our lab
showed significant undercarboxylation of osteocalcin in postmenopausal women, which was
normalized after vitamin K supplementation. These data, which strongly suggest that a mild
vitamin K deficiency is common in elderly women, were confirmed by the group of Delmas, who
also showed that circulating undercarboxylated osteocalcin is inversely correlated with bone
mass, and that it is a strong risk factor for hip fracture. Several clinical trials showed that the
daily intake of 1-10mg/day of vitamin K results in an increase of serum markers for bone
formation, and in an increase of urine markers for bone resorption. Also urinary calcium loss was
decreased, notably in those with high calcium excretion. Japanese studies showed that intake of
vitamin K supplements results in substantial reduction of postmenopausal bone loss, but these
data need verification in other populations.
In the arterial vessel wall the functions of Gla-proteins are probably associated with: local
inhibition of thrombosis (protein S), inhibition of mineralisation (MGP), and stimulation of
normal cell growth and prevention of apoptosis in growth arrested cells (Gas6). MGP-deficient
mice were born to term but all died before the 8th week due to massive arterial calcification and
rupture of the aorta. Gas6 was shown to prevent starvation-induced death of fibroblasts and
smooth muscle cells, and may act as a growth-potentiating factor which acts synergistically with
other known growth factors in these cells. Data presently available suggest that in humans Gas6
may play a key role in preventing the degeneration of an atherosclerotic vessel wall.
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Conclusions: Vitamin K dependent proteins play a regulatory role in at least three important
physiological processes: blood coagulation, bone metabolism, and vascular biology. Recent
developments suggest that for normal haemostasis the nutritional vitamin K intake is adequate,
but that both other processes may require intakes above the accepted RDA levels.
DENTAL PROBLEMS AND CFS
I am always looking for low grade chronic undiagnosed infections in CFS patients and one
important overlooked source of infection is root filled teeth. This section has been kindly written
by Mr David Harvie Austin who is the secretary of the Mercury Free Dentists group.
Root Filled Teeth
Back in the 1920s Dr Weston-Price, head of scientific research for the American Dental
Association, investigated the accepted professional consensus (a consensus which still holds
today) that root filled teeth were "sterile".
What he found was that, despite x-ray "confirmation" of resolution of any abscess signs or
symptoms, root filled teeth actually remained sterile for only 2 days, after which, although
continuing to be symptom free, they were no longer sterile but were dependent on a healthy
immune system to "contain" the residual low grade infection thus giving the appearance of
sterility (i.e. no symptoms).
Dr Price demonstrated that part of the problem lay with the fact that branching out from, and
connected to, the central channel (the root canal) in the centre of the tooth root, is a network of
tiny tubules (channels). When the tooth is alive, a supply of blood vessels/nerves come up
through the root canal and supplies nourishment through the tubule network to the tooth.
When the nerve dies, the root canal becomes invaded by bacteria which, if they escape through
the tip of the root, will infect the area around it causing an abscess to form. However, these
bacteria also find their way into the surrounding tubule network. Although any subsequent root
canal treatment provided to remove/clean out and seal the nerve canal will, generally, resolve
the gross infection around the root tip, it will not kill off the bacteria within the tubules.
There residual bacteria mutate within the tubules and although "sealed in" by the central
channel filling on one side and a cement layer (which is the attachment zone on the root surface
for the fibrous ligament which suspends the tooth in the jaw bone) on the other, they still produce
a toxic waste that can seep out of the tooth into the surrounding bone and be transported by the
bone's blood supply to other parts of the body.
Dr Weston-Price demonstrated that in immuno-stressed patients this toxin can cause damage to
other organs in the body - especially if there is either a genetic weakness or the immune system
has been compromised from other sources.
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He also demonstrated that the sealant in the central channel shrinks after time thus creating a
further void within the channel, which can then become once again a breeding ground for
bacterial activity - from any residual bacteria outside the root tip or within the tubules.
In conclusion, although by all clinical standards (lack of symptoms, apparent resolution, on xrays, of an abscess area at the tip of the tooth) root sealing of a tooth may be considered
successful, the reality is that this tooth will always remain as a 'foreign object' within the mouth
capable of introducing low grade bacterial or toxic infection (focal infection) into the blood
stream and thus to other parts of the body (more especially, other organs).
While the immune system is healthy, it can quite easily cope with this infection, but when it is
compromised (overloaded or weakened by other sources - some as simple as a very bad bout of
flu), its capability to cope with this localised infection may be reduced with resultant secondary
symptoms showing up in other organs of the body - more especially when any of these have a
genetic weakness.
Extracted Tooth Sites
Teeth are not directly attached to the jaw bone but are suspended in bony sockets by means of a
fibrous ligament (the periodontal membrane) and are fed by a network of blood vessels which
enter them through the tip of their roots.
Damage to a tooth through decay/accident etc. can result in the need to remove the tooth by
"detaching" it from this membrane. In doing so some of the fibres in this membrane remain
attached to the bony socket and unless scraped out to at least 1mm beyond the borders of the
socket, will remain within this socket while it leals and attempts to form new bone.
In a socket that has been completely cleaned out, the bone forming mechanism creates healthy
new bone, but when presented with residual fibrous (granulation) tissue, it becomes inhibited
and tries to "solve" this problem by forming a capsules (cystic area) around it.
The result is a non-bony area within the healed bone that can act as a harbour for any bacteria
that may have existed within the tooth or the bone/ligament around it, prior to its removal.
As with root-filled teeth, this cystic (cavitation) area can act as another source of focal infection
capable of producing the same symptoms/results as a root filled tooth.
The Treatment
In both cases, treatment involves removal of the focal infection source. With root filled teeth, they
are removed and the resultant socket thoroughly cleaned of all granulation tissue. With the
"cavitation" areas, the old socket is reaccessed, the cyst area completely removed and the
resultant socket once again thoroughly cleaned out.
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Mercury Poisoning
Mercury is one of the most toxic metals known to man. We know it leaks out from "silver"
fillings as mercury vapour which is inhaled, absorbed into the blood stream and deposited round
the body including the brain. Nobody knows how much damage mercury is doing. Mercury
toxicity can be assessed to a certain extent by measuring the activity of the patient's white cells in
the presence of weak solutions of mercury. This test can be arranged at Biolab (10mls of clotted
blood), cost £80.00. The same can be done for fluoride. However what the test will not tell you is
to what extent this problem is clinically significant. i.e it cannot predict whether the patient will
feel better following removal of mercury fillings. Mercury poisoning can be assessed to a certain
extent by measuring the activity of the patient's white cells in the presence of weak solutions of
mercury. This test can be arranged at Biolab (10mls of clotted blood), cost £85.00.
However I have seen several patients improve following removal of mercury fillings. I would not
allow my daughters to have a mercury filling and as my own drop out, they are being replaced by
white fillings.
The other dental problem encountered are from the "small battery effect" where there is an
electrical disturbance if there is more than one type of metal in the mouth. This electrical
disturbance can cause illness.
Getting Benefits
The benefits worth looking at are:
Incapacity benefit – for patients unable to work. You may have to do the All Work Test to
qualify.
Disability Living Allowance – for extra money to help with disabilities which prevent patients
caring for themselves – this is made up of a care and a mobility component. There is huge
variability from region to region as to who gets and who does not. If you are unreasonably turned
down, ask for the reasons why including a copy of the examining doctors report. Ask for help
from Citizens Advice Bureau, or a solicitor. I can help with preparing you appeal, but there is a
charge for reports. Please phone in and ask Hania (my secretary).
The All Work Test
For this test initially you have to do 2 things:
1. Answer a questionnaire sent to you asking about your illness (form IB50).
2. Get a statement from your doctor on which he has to provide a diagnosis and details of how
your condition affects your ability to work. This form is called a "form med 4" ( it's new, large
and green). The form is completed by the GP and given to the patient. Following this, about half
will be asked to attend a medical examination by a DSS doctor.
The decision about capability for work is made by an Adjudication Officer.
How this Affects People With CFS
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CFS is not listed as an illness which automatically excludes patients from the "all work test".
This means that sooner or later CFS patients will have to undergo an "All work test" and the
opinion expressed on "form med 4" is important.
On any medical certificate a doctor may state incapacity for work for two reasons:
"the patient is definitely unable to work because of a physical or mental disorder", and/or "it
would be prejudicial to their health to undertake work".
The fundamental problem with CFS patients is that there is no objective test which measures the
degree of disability. This means that the doctors involved can chose either to believe or
disbelieve a patient. Clearly this puts CFS patients at risk from the particular whims of the
doctors they are involved with. I (SM) am able as a private doctor to issue a form med 4, so if
you happen to have a GP who does not recognise CFS as an illness, then it might be wise to
allow me to fill in your form med 4 when it is required by the benefits agency.
Dealing With The "All Work Test"
The "All work test" looks at 14 specified areas of physical and sensory function namely: walking,
walking up and down stairs, standing, sitting, rising from sitting, bending and kneeling, lifting
and carrying, manual dexterity, reaching, speech, vision, hearing, continence, remaining
conscious at time other than normal periods of sleep. For each of these activities, there are levels
of ability which are assessed. In assessment of mental health there are 4 specified areas: daily
living, completion of tasks, coping with pressure and interaction with other people.
For an CFS sufferer, the important point is not what you can manage on the day, but what you
can manage without causing delayed fatigue.
I spoke to the DSS doctors at Birmingham who tell me that CFS is a recognised disease, so when
you go, ask the examining panel if they recognise CFS as a physical disease.
Further information from the local Social Security Office, leaflet IB201.
Further Information
I am the secretary of the British Society for Allergy, Environmental and Nutritional Medicine. Up
until now this has been a doctors only society. However the Society is now offering associate
membership to allied groups and non-medical but scientifically trained people such as dieticians,
health visitors, nurses and so on. We now offer supporter membership to anybody who is
interested. Supporters are allowed all the benefits of membership except admission to scientific
meetings. Membership includes the Journal of Nutritional Medicine - this is a quarterly
publication in which original research, literature reviews, clinical practice, editorials, letters etc
appear pertaining to allergy and environmental matters. Recently we have linked up with the
Australian College of Nutritional and Environmental Medicine and the American Academy of
Environmental Medicine and the Journal is circulated to all these groups.
The Journal of Environmental and Nutritional Medicine has published more widely on subjects
pertaining to CFS than any other journal. It has closely followed the organophosphate debate, the
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silicone debate, carbon monoxide, hormones in the treatments of CFS and so on. It is an
excellent read.
If anybody is interested in membership, please apply to Sue Price, BSAEM/BSNM, PO Box 7,
Knighton, Powys LD7 1SL Fax 01547 550339. Web site www.bsaenm.org.uk.
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