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A Response to the DWP Document:
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Greg Crowhurst
August 24th 2005
This document does not seem to make a clear distinction between ME/CFS and
Chronic Fatigue, the former being a World Health Organisation (WHO) identified
organic neurological illness and the later a WHO defined mental disorder. Because
the document fails to make this distinction at the outset, there is a confusion the whole
way through between ME/CFS and Chronic fatigue.
This leads to wrong assumptions, misinterpretations and one-sided psychiatricallybiased statements - inappropriate for a physical/neurological illness.
The appropriate, informed research into the physical basis of this illness appears to
have either not been done or to have been omitted from this document.
As this document stands it does not represent a fair or accurate picture of the person
suffering from CFS/ME as defined by WHO and will steer the way to unhelpful and
incorrect assessments. It may also usher in wrongful assumptions on the part of
assessors, leading them to believe :



that Cognitive Behaviour Therapy (CBT) and Graded Exercise are an effective
cure
that those unable or refusing to participate in inappropriate psychiatric
"treatment" regimes or who are not getting better following them, are somehow
inadequate and at fault.
or that they do not have the right thought processes or the correct attitude to
getting better / returning to work.
This is a very worrying and inaccurate document and needs far more balance and
consideration of the physical causes and the reality of the physical illness ME/CFS ,
in order to be a fair and usable guide to assessing need.
1.The term chronic fatigue syndrome (CFS) is
used to describe a spectrum of illnesses that are
characterised by physical and mental fatigue and
fatigability.
ME/CFS is classified as a neurological illness
under ICD code G93.3 , while "Chronic
Fatigue" is classified in ICD-10 as F48 (a
mental disorder).
The terms ‘fatigue’ and ‘chronic fatigue’ were
not associated with this illness at all until the
name was changed from ME to Chronic Fatigue
Syndrome (CFS) in 1988 in the US . In 1988,
following a spectacular increase in cases in the
US, the term “chronic fatigue syndrome”
(known as “CFS”) was introduced and doctors
were encouraged to lump together all cases of
“chronic fatigue” of whatever origin and to
regard them as one syndrome.
------------------------------------------------2. ME/CFS is also known as post viral fatigue
syndrome. In the past the term neurasthenia was
also used to describe the condition. There is little
evidence that ME is different from CFS most
authorities consider the condition as ME/CFS.
3. ..It is likely that the term ME/CFS describes a
spectrum of disorders in which physical and
psychological functioning are affected.
This is misleading. A common misapprehension
is to confuse ME with Chronic Fatigue and then
treat them both as mental health conditions.
ME/CFS, a neurological condition should not be
confused with Chronic Fatigue "Neurasthenia"
is used today only in connection with "Chronic
Fatigue", which is classified by the World
Health Organisation in ICD-10 as F48 (a
mental disorder), whereas ME/CFS is classified
as an organic neurological disease under ICD
code G93.3.
---------------------------------------However ME/CFS is first and foremost a
neurological illness.
As microbiologist Dr. Elizabeth Dowsett
explains: ‘There is ample evidence that M.E. is
primarily a neurological illness… although nonneurological complications affecting the liver,
cardiac and skeletal muscle, endocrine and
lymphoid tissues are also recognised’ (Dowsett,
Elizabeth MBChB THE LATE EFFECTS OF ME Can they
be distinguished from the Post-polio syndrome?
http://www.ott.zynet.co.uk/polio/lincolnshire/library/dowsett
/lateeffectsme.html )
The confusion lies in calling ME, "CFS". It is
the only a short step to calling it Chronic
Fatigue - for example in this DWP Document,
the term "ME" seems to have been dropped
altogether in Appendix 1.
4. In recent years steps have been taken by
experts to formulate criteria by which a case of
ME/CFS can be defined. The symptom of fatigue
is a feeling that can be difficult to describe and
quantify.
There are no confirmatory abnormal findings on
physical examination,
It must be stressed that fatigue is only one
symptom among many others; more than 64
distinct symptoms have been authentically
documented in ME/CFS.
This is wrong. ME/CFA , in fact, cannot be
diagnosed without physical (neurological) signs.
(Hooper H, Williams
M
A synopsis for the UK
Parliamentary
Enquiry
18th
Aug
2005,
http://www.meactionuk.org.uk/ME__WHY_NO_ACCOUNTABILITY.htm)
Hyde (2003) for example outlines how :"ME
illness in adults is associated with measurable
changes in the CNS (central nervous system)
and autonomic function and at times injury to
the cardiovascular, endocrine, and other organs
and systems. (Hyde B (2003) The Complexities of
.
Diagnosis , Handbook of Chronic Fatigue Syndrome, John
Wiley & Sons Inc) However, these tests are rarely
done and will not be available to support
individual cases unfortunately.
Physiological and biochemical abnormalities
found in ME/CFS include :
BIOCHEMICAL
Oxidative stress
Dysregulation of anti-viral pathways
Endothelial dysregulation — i.e., abnormal
responses of small blood vessels selectively to
acetylcholine
Altered brain perfusion — i.e. areas of reduced
blood flow in the brain
Orthostatic hypotension — i.e., physiological
changes to blood pressure/cardiovascular
mechanisms on standing
BRAIN
Metabolic abnormalities — e.g., alterations of
brain choline (important in brain function)
MUSCLE
Altered metabolism — e.g., changes in muscle
composition or use of fuel
Abnormal response to exercise
Enteroviral sequences in muscle .
(Abbot N & Spence V Abbot N. Spence V.(2004) Advances
in the biomedical investigation of ME Interaction 48, 1415)
"Many startling abnormalities have been found
in ME/ICD-CFS patients in almost every bodily
system- such as extremely low blood volume,
enzyme pathway disruptions, cardiac
disturbances, and malfunction of the
hypothalamus-pituitary-adrenal axis. . . One
remarkable study, utilizing specific brain scan
techniques, found the effects of ME/ICD-CFS on
the brain to be strikingly similar to AIDS
dementia. Earlier research discovered punctate
lesions in ME/ICD-CFS brains resembling those
of Multiple Sclerosis patients. Dr Paul Cheney
found that in dual chromatography analyses,
many ME/ICD-CFS patients actually had more
derangement of the brain, on a biochemical
level, than Parkinson's or Alzheimer's patients. "
(Munson, Peggy (ed) 2000, Stricken; Voices from the Hidden
Epidemic of Chronic Fatigue Syndrome, The Haworth Press,
New York )
nor any specific investigation such as an
abnormal blood test that is diagnostic.
Although there is as yet no single test which can
diagnose the condition, there is, as Bassett
(2004) explains, “an abundance of research
which shows that it is an organic illness which
can have profound effects on many bodily
systems and many aspects of the pathophysiology
of the disease have, indeed, been medically
explained in volumes of research articles “(Bassett
J (2004) updated July 2005. What is ME/ICD-CFS ? A
Medical and Political Overview.
http://www.ahummingbirdsguide.com/whatisme.htm)
----------------------------------------------------------5. A consensus definition of research criteria for
chronic fatigue syndrome ...
The Fukuda criteria referred to here, drawn up
in 1994 by the United States centre for Disease
Control and Prevention (CDC), has become
internationally accepted. However the CDC
criteria, were primarily intended for research
purposes and not for clinical definition. Because
the CDC emphasises fatigue as the sole
compulsory criterion, it has attracted criticism
for allowing disparate fatigue conditions, for
example
post-traumatic
stress
disorder,
depression and conditions that improve with
exercise to be diagnosed as CFS/ME; the CDC
definition is increasingly viewed as being too
broad and indistinct to be useful.
. agreed by international experts..
Few of the 18 members who drew up the CDC
criteria had either looked at an epidemic of the
illness (there have been over 70 around the
world) or examined any patients with the illness.
The three most experienced members of the
board refused to sign the final document. With
very few exceptions the remaining members
never published on CFS/ME again. (Hooper, M. &
6. A number of medical conditions such as
fibromyalgia, irritable bowel syndrome, migraine
may also occur in people with ME/CFS. These
have some symptoms in common with those
described in ME/CFS.
Montague S 2001. Concerns about the forthcoming UK Chief
medical officer’s report on Myalgic Encephalomyelitis (ME)
and Chronic Fatigue Syndrome (CFS) notably the intention
to advise clinicians that only limited investigations are
necessary
(http://www.meactionuk.org.uk/Comments_on_advice_given
_(by_a_member_of_the_Key_Group).htm)
-------------------------------------------------------ME/CFS is similar to other diseases, yet great
care must be taken not to carry the comparison
too far. As McLaughlin (2004) warns : ‘these
[illnesses] may coexist with other conditions as
well and are viewed as separate entities which
stand on their own, regardless of whether a
person has other medical problems. Even though
there are similarities or overlap does not mean
that they represent the same etiological or
pathobiological process.’ ( McLaughlin, Jill, 2004,
"Information on Myalgic Encephalomyelitis (M.E.)/Chronic
Fatigue Syndrome (CFS)" [Online], Available:
http://listserv.nodak.edu/cgibin/wa.exe?A2=ind0409c&L=co-cure&F=&S=&P=7828 )
Prolonged fatigue is also seen in common mental
health disorders such as anxiety and depression.
Despite fatigue being seen in mental health
disorders, it is important not to confuse ME/CFS
as a mental health disorder. Hyde (2003), for
example, found that less than 5% of ME/CFS
sufferers " have any significant psychiatric
illness. " ME/CFS is a WHO acknowledged
organic neurological illness.
7. It is estimated that around 0.4 % of the UK
population have ME/CFS..
The incidence of ME is rising, no other disease
surpasses the rate of increase (Hooper &
Montague 2001)
It appears to be more common in women
All autoimmune disorders have a female
preponderance due to hormonal influences
(Hooper H, Williams M A synopsis for the UK
Parliamentary Enquiry 18th Aug 2005,
http://www.meactionuk.org.uk/ME__WHY_NO_ACCOUNTABILITY.htm) )
It is rare before puberty, but may occur in
children.
Estimates vary but there are probably around
20,000 children with ME in the UK , yet some
doctors do not recognise the problem, and fail to
investigate it (MERGE (2005 A unique study of
biochemical markers in the blood of young
children with ME/CFS ). A study in the UK
found that ME/ICD-CFS was by far the most
common reason for a child’s long term absence
from school. (Dowsett, Elizabeth MBChB ME/CFS IN
THE UK SCHOOL POPULATION,
\http://www.25megroup.org/Information/Medical/ME%20in
%20the%20UK%20school%20population.htm
8. Although the cause of ME/CFS is unclear
certain factors may be important in its
development. These are usefully divided into
predisposing, precipitating and perpetuating
factors.
ME/ICD-CFS is a physical illness, a systemic
disease which seems to be initiated by a virus
infection. It . appears to be highly infective but
also highly selective. (Bassett 2004) . The
aetiology and pathogenesis of ME/CFS are not
fully understood. ( Crowhurst G (2005) Supporting
People with Severe Myalgic Encephalomyelitis , Nursing
Standard, 19, 21 , 38-43)
...some individual circumstances may perpetuate
the condition in some people and be a barrier to
early recovery. For example , beliefs that
exercise is damaging..
The patient with the diagnosis of ME/CFS is
chronically and potentially seriously ill (Hyde
2003) Clinical recovery, especially at an early
stage, is possible, but, as Dowsett (2001) makes
clear that still " does not preclude further effects
of the illness in later years. It has to he
remembered that ME is a life-long disability
where relapse is always possible. "
The "belief that exercise is damaging" is
extremely valid for the severe ME sufferer. 82%
of severely affected patients (The 25 % Group
Severely Affected ME Analysis Report on Questionnaire,
Troon) said their condition was made worse or
even caused by graded exercise. The Chief
Medical Officer (2002) warns that exercisebased regimes advocated for less severely
affected patients tend not to have been studied
among those most severely affected. ( Department of
Health (2002) Annexes to the Report of the Chief Medical
Officer of an Independent Working Group, London, The
Stationary Office) Jones (2004) warns against the
danger of imposing inappropriate coping or
management strategies on severely ill patients
because such methods have been shown to make
little or no difference or worsen the condition
dramatically and in some cases irreversibly. (
Jones D Comments on the PACE identifier, The Quarterly,
17, 20.)
----------------------------------------------------------9. The main symptoms are persistent mental and
physical fatigue, tiredness or exhaustion usually
made worse by activity.
The symptoms of severe ME/CFS are much
more detailed and much more severe than
described here. Crowhurst (2004), for example,
describes how every morning : "I am so tired I
cannot wake up properly and I fall back into two
or three further bouts of sleep. Each time the
pain, paralysis, numbness, prickling, itching,
burning sensations worsen in my whole body. My
face, eyes and scalp also burn and itch, my lips
are numb, I can barely breathe if it has grasped
hold of my chest muscles and diaphragm."
(Crowhurst L 2004 The Experience of Severe ME
www.ontree93.freeserve.co.uk/experiencesevereme.html)
The Canadian Clinical Case Definition (
Carruthers B etal (2003) Myalgic encephalomyelitis/chronic
fatigue syndrome : clinical working case definition,
diagnostic and treatment protocols. Journal of Chronic
fatigue Syndrome 11, 1, 7-115 ) requires that a
person's condition worsens following exercise
and that other symptoms must be present for a
diagnosis of CFS/ME to be made. These include :







Sleep dysfunction
Pain
Neurological manifestations
Autonomic manifestations
Neuroendocrine manifestations
Immune manifestations
Immune manifestations
11. Those with more severe forms of the
condition are likely to be unable to continue at
work or in education. daily living activities,
hobbies, interests and social interaction are also
likely to be reduced.
There are an estimated 62, 500 people with
severe ME /CFS in the UK receiving "seriously
inadequate health care" according to the Chief
Medical Officer (DH 2002). Quality of life tests
indicate that people with severe ME/CFS feel
similar to patients with AIDS two months before
death in their ability to do things (Munson 1995 op
cit ). Australian researchers found that patients
with severe ME/CFS experience more
dysfunction than those with Multiple Sclerosis,
that in severe ME/CFS the degree of impairment
is more extreme than in end-stage renal disease
and heart disease and that only in terminally ill
cancer and stroke patients is the sickness impact
profile greater than in severe ME/CFS. (Marshall
E et al (2001) What is ME/ What is CFS ? Information for
Clinicians and Lawyers.
www.meactionul.org/What_Is_ME_What_Is_CFS.htm)
In the most severe cases the individual may
spend most of the day resting or be bed ridden.
This is an oversimplification. The person with
severe ME spends their day in great suffering.
The may be unable to :
 Speak
 Sit up
 Move
 Get out of bed
 Feed themselves
 Get a drink
 Get their own drugs
 Go to the toilet
 Wash
 Answer the door
 Get the post
 Converse
 Cope with any noise
 Cope with light
In addition their whole body might be too painful
to touch. Scalp, eyes and throat may be
throbbing or burning. They may experience
numbness, paralysis, swollen eyeballs and
nausea. Headaches or head pain may be sharp.
They will be in too much pain to be touched.
They will have great difficulty in getting
comfortable.
They may suffer variable muscle weakness. There
is danger of falling or stumbling. They may not
be able to use hands, fingers to perform fine
movements. They may not be able to walk, write,
type, clean or attend to personal care. (cf.
Crowhurst G 2005 op cit)
13. Physical examination is normal in most
cases.
----------------------------------------------Therefore testing is inadequate at present. In
July 2001 the American Medical Association
issued a statement confirming that 90% of
ME/ICD-CFS patients will have normal results
on basic testing. More advanced investigations
such as the RNase L immunoassay test (RNase L
is an important anti-viral pathway that has been
shown to be abnormal in ME/ICD-CFS), are
recommended by the Canadian Clinical
Guidelines (Hooper H, Williams M A synopsis for the UK
Parliamentary Enquiry 18th Aug 2005,
http://www.meactionuk.org.uk/ME__WHY_NO_ACCOUNTABILITY.htm)
some people who rest a lot may have postural
hypotension.
This is far too simplistic, the reality is much
more complex. As McLaughlin (2004) points
out : " One study found found left-ventricular
dysfunction following exertion and orthostatic
stress in patients with M.E. and that the heart
failed to pump enough blood following exertion
and upright posture. Dr. A. Martin Lerner
discovered persistent viral infection in the heart,
causing left-ventricular dysfunction, resulting in
exercise intolerance. (Exercise, in turn, worsens
the cardiac dysfunction.) The disease in the early
stages is consistent with a dilated
cardiomyopathy that in later stages might result
in progressive, end-stage dilated
cardiomyopathy, a type of heart failure. "
Of crucial significance is the fact that it has been
shown by US clinicians and researchers that
patients with the disorder are in fact in cardiac
failure.
http://www.meactionuk.org.uk/The_MRC_Profit
s_before_Patients.htm ).
---------------------------------------------------------
14. People with ME/CFS require an individual
open minded approach to treatment which
includes exploring and understanding their
beliefs about the illness and how it affects them.
This seems to imply that somehow the illness is a
result of a misguided thinking process. ME/CFS
is a neurological illness.
An explanation that the syndrome is not
progressive or life threatening is an important
initial step .
But an inaccurate one. Cycles of severe relapse
are common, as are further symptoms developing
over time. Around 30% of cases are progressive
and degenerative and , sometimes ME/ICD-CFS
is fatal. (ME Society of America : http://www.cfidscab.org/MESA/framework.html
ME/CFS, the neurological condition, differs
from the mental illness Chronic Fatigue in :
 The epidemic characteristics
 The known incubation period
 The acute onset
 The associated organ pathology,
particularly cardiac.
 Infrequent deaths with pathological
central nervous system (CNS) changes.
 Neurological signs in the acute and
sometimes chronic phases.
 The specific involvement of the
autonomic nervous system.
 The frequent subnormal patient
temperature.

The fact that chronic fatigue is not an
essential characteristic of the chronic
phase of ME. (Hyde 2003 op cit)
The aim of rehabilitation or treatment is to
enable the person to improve their quality of life
by returning in a gradual way to usual daily
activities, education or work.
It is unrealistic to expect or demand this of those
who severely ill with ME/CFS . According to US
statistics provided by the Centre for Disease
Control, only 4% of patients had full remission
(not recovery) at 24 months (Hooper H, Williams M
A synopsis for the UK Parliamentary Enquiry 18th Aug
2005http://www.meactionuk.org.uk/ME__WHY_NO_ACCOUNTABILITY.htm) )
15. Supervised and gradually increasing physical
activity will enable the majority of people to
improve and some to return to a normal level of
functioning.
This assertion is largely unproven. Graded
Exercise Therapy (GET) is positively harmful to
those with authentic ME . Action for ME (2001)
for example found that : “Graded exercise was
reported to be the treatment that had made most
people worse”. (The Severely Affected. Preliminary
Report: Action for ME, 28th February 2001, p 6)
Around 25-30 % of sufferers, the severely
affected, will still "remain permanently,
severely disabled and dependent on others" (DH
2002).
Findings which suggest mitochondrial metabolic
dysfunction similar to mitochondrial
encephalomyopathy in ME/ICD-CFS patients led
ME/ICD-CFS expert Professor Paul Cheney to
comment, ‘The most important thing about
exercise is not to have (patients with ME/ICDCFS) do aerobic exercise. I believe that even
progressive aerobic exercise is counterproductive. ' (Williams, Margaret. Critical considerations
2004, http://listserv.nodak.edu/cgibin/wa.exe?A2=ind0411A&L=co-cure&P=R3284)
16. Cognitive Behaviour therapy (CBT) is used
in ME/CFS to help people to examine their
interpretation of symptoms such as fatigue or
muscle pain, which they may perceive as
dangerous to their bodies
ME/CFS is a neurological illness and CBT "is of
no lasting value " to CFS/ME sufferers.(Hooper H,
Williams M A synopsis for the UK Parliamentary Enquiry
18th Aug 2005, ME Action). as Goudsmit points out : "
Research has totally disproven the CBT theory.
Some aspects apply to a minority of patients or in
the case of ME, to an extremely small
minority . " (Goudsmit E book review New Research
Ideas in Chronic Fatigue. Frackowiak R and Wessely, S
(Eds.) Royal Society of Medicine. 2001.
http://freespace.virgin.net/david.axford/bookrev6.htmPb. )
.
..people are encouraged to view such symptoms
as reversible physical and psychological
processes rather than as evidence of a fixed or
progressive disease process."
This is a dangerous attitude and unhelpful in the
assessment of this neurological illness.
The hypothesis being presented here is based on
the erroneous assumption that " the patient's
impairments are learned due to wrong thinking,
and "considers the pathophysiology of CFS to be
entirely reversible and perpetuated only by the
interaction of cognition, behavior, and emotional
processes. According to this model, CBT should
not only improve the quality of the patient's life,
but could be potentially curative" However :
"This hypothesis is far from being confirmed,
either on the basis of research findings or from
its empirical results. Nevertheless, the
assumption of its truth by some has been used to
influence attitudes and decisions within the
medical community and the general cultural and
social milieu of ME/CFS. To ignore the
demonstrated biological pathology of this illness,
to disregard the patient's autonomy and
experience and tell them to ignore their
symptoms, all too often leads to blaming patients
for their illness and withholding medical support
and treatment. " ( Carruthers et al (2003) "Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome: Clinical
Working Case Definition, Diagnostic and Treatment
Protocols" which appeared in the Journal of Chronic Fatigue
Syndrome, Vol. 11(1) 2003, pp. 7-115, ) .
19. Since a definite cause for ME/CFS has not
been identified there has been much debate as to
whether it is a physical illness or not.
ME/CFS has been identified by the World Health
Organisation as an organic neurological illness
since 1969.
22. Severe cases are less likely to recover
completely or benefit substantially from a
treatment programme.
It is not that they are "less likely", they are
unlikely. Recovery from severe ME/CFS is
extremely rare, about 2%. Bassett (2004 op cit)
states " ME/ICD-CFS is a life-long disability
where relapse is always possible. Cycles of
severe relapse are common, as are further
symptoms developing over time. Around 30% of
cases are progressive and degenerative and
sometimes ME/ICD-CFS is fatal.
ME/CFS specialist Dr. Paul Cheney stated
before a FDA Scientific Advisory Committee:
"I have evaluated over 2,500 cases. At best, it is
a prolonged post-viral syndrome with slow
recovery. At worst, it is a nightmare of
increasing disability with both physical and
neurocognitive components. The worst cases
have both an MS-like and an AIDS-like clinical
appearance. We have lost five cases in the last
six months. The most difficult thing to treat is the
severe pain... 80% of cases are unable to work or
attend school. We admit regularly to hospital
with an inability to care for self" (Hooper, M.
Marshall E.P. & Williams, M. 2001, What is ME? What is
CFS? Information for Clinicians and Lawyers,
http://www.25megroup.org/Information/Medical/what%20is
%20me.htm )
‘When asked on CNN how many of his ME/ICDCFS patients had fully recovered in fifteen years,
Dr Peterson equivocally and chillingly stated,
"None."’ (Munson 2000, p. 5 op cit)
A belief that the condition is not amenable to
treatment tends to predict a poor prognosis.
This is a psychiatrically-biased statement and
has no scientific justification whatsoever for this
neurological illness. The main "treatments" on
offer remain psychiatric , and what few trials
there have been , tend not to deal with the house
and bed- bound . As Abbot (2004) ( Abbot N (204)
Severely Overlooked by Science — An Overview of
Research on Severely-ill People with ME,
http://www.25megroup.org/Information/Medical/Severely%2
0overlooked%20by%20science.htm) .points
out : " very
few studies exist, and all define "severe illness"
in different ways, complicating interpretation of
the findings. And specific laboratory-based or
experimental studies on severe sufferers are as
rare as hens' teeth."
27. Severe Condition
There is unlikely to be any requirement for
supervision either at home or out of doors, since
impairment of cognitive function is usually only
mild.
It is wrong to state that "impairment of cognitive
function is usually only mild. " Crowhurst (2004
op cit), for example, states how : " I became
affected cognitively too so that I have huge
difficulties ( which vary in extent and impact) in
receiving and processing information. This
means that even a question may trigger a
complete blank down of my mental process and
literally cause my body to scream with pain. "
Dr Paul Cheney, (Bassett (2004
http://www.ahummingbirdsguide.com/whatisme.
htm) , found that in dual chromatography
analyses, many ME/ICD-CFS patients actually
had more derangement of the brain, on a
biochemical level, than Parkinson's or
Alzheimer's patients. Dr Sheila Bastien, who
studied a group of educated patients, was
stunned to realize that patients who initially
appeared very lucid had suffered tremendous
drops in IQ points, so severe in some cases that
"a few performance IQ's were startlingly close to
the legal definition of idiocy."
People with severe ME suffer "brain fog" which
is highly disabling and many will require
supervision for their own safety in a range of life
needs.