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Table 1. Socio-economic information for women in Ireland. Pseudonym Age Education Individual Yearly Incomea Income Sourceb Profession or Employment Tenure Household Membersc Aisling 26 Teacher Training €6,760 State Disability Teacher parents Parents Alana 40 Leaving Certs €6,760 State Disability Service rent Ann 54 Leaving Certs €6,760 State Disability Service own Corina 41 Nurse Training €6,760 Nurse rent Dorothy 56 Nurse Training €7,800 State Disability Employment Pension Husband and children Husband and children Alone Nurse, Retired own Husband Elizabeth 29 University €35,000 Job Communications pays no rent Partner Heidi 52 Teacher Training €15,600 Employment Pension Teacher, Retired own Alone Inga 40 Secondary €6,760 State Disability Service own Kathleen [45] Leaving Certs €6,760 State Disability Industry own Maighread 50 Postgraduate Job Counsellor own Martha 45 University Mary 42 Niamh Jobs Professional, own Leaving Certs Not reported Not reported €6,448 State Disability Labourer parents 33 University None Awaiting Disabiilty Professional own Pat 59 Leaving Certs €6,760 Employment Pension Service, retired own Rhona 42 Leaving Certs €6,760 State Disability Not Employed own Roisin Siobhan Twyla Una 31 23 38 30 University University Nurse Training Secondary €6,760 €6,760 €8,840 €6,760 State Disability State Disability State Allowance State Disability Service Professional Nurse Service parents rent own rent Husband and children Husband and children Husband and children Husband and children Parents Husband and children Husband Husband and children Parents Alone Children Partner a Incomes were self-reported. There may be discrepancies in amounts reported. b In order to maintain confidentiality, some income sources were not reported, such as trusts, real estate, and support payments are not listed. c “Own” implies there is a mortgage. We note the status of the mortgage only in the cases where the mortgage is paid off. Additional fees are also noted. d Description of household members are self-reported. We use the terms the woman used. “Partner” does not indicate sexuality. Table 2. Socio-economic information for women in British Columbia, Canada. (Source: Adapted from Moss Y Dyck (20020, pp. 72-73.) Pseudony m Age Education Individual Yearly Incomea Agnes 71 Trade school, BSW, MSW $26,500 Alex 44 College $21,500 Brie 57 BA $8,220 State Disability Pension Caron 51 BA, MSW $26,400 Connie 60 Trade school Debby 37 Dolores 44 Elise 44 BA, BSW College Degree in Nursing BSW, MSW Erin 38 Gina Income Sourceb State Disability Pension; Old Age Pension State Disability Pension, Long-Term Disability Profession or Employment Tenure Household Membersc Retired own; no mortgage Husband Banking own Alone rent Alone Long-Term Disability Psychological Testing Social Worker own $19,920 Long-Term Disability Secretary own None Mother Student n/a Husband Husband; children Mother $24,000 Long-Term Disability Nurse own Alone $60,000 Employed as Counselor Counselor Partner Grade 12 $8,220 Social Assistance Retail own own; no mortgage; maintenance fees 47 MSW $6,200 State Disability Pension, Life Insurance Disability Benefits Social Worker own Husband; children Janice 33 BA $14,400 Employed as Teacher Teacher own Husband; children Jayne 53 BEd $37,680 Teacher own; no mortgage Alone Julia 40 Trade School $40,000 Retail rent Alone Leeza Pauline 54 55 None $25,000 Husband Alone 54 $33,600 Long-Term Disability Homemaker Social Worker Project Manager own own Raquel Business College BA College Degree in Interior Design State Disability Pension, Long-Term Disability Employed in several retail positions Husband Long-Term Disability own Alone Reann 33 BSc, MSc $22,560 Technician own Husband Sandra late 30s College Degree in Dental Hygiene $14,950 Healthcare Provider own Husband; children Shelagh 43 College None Sophie Stella 61 57 Trade school High School Teresa 49 Verna Alone Homemaker own Husband $36,780 $24,000 State Disability Pension, Long-Term Disability Employed as Healthcare Provider Note: State Disability Pension denied Long-Term Disability Ex-husband Technologist Homemaker Alone Alone Trade school $8,220 Social Assistancee Nurse’s Aide own own own; no mortgage late 40's BA Not reported Alone 40 BA Fluctuating Community Organizer Banking/Stude nt own Vivienne Employed as Community Organizer Student Research Contract Work own Partner Yvonne 33 BA Not reported Father Student rent Alone a Incomes were self-reported. There may be discrepancies in amounts reported. b In order to maintain confidentiality, some income sources were not reported, such as trusts, real estate, and support payments are not listed. c “Own” implies there is a mortgage. We note the status of the mortgage only in the cases where the mortgage is paid off. Additional fees are also noted. d Description of household members are self-reported. We use the terms the woman used. “Partner” does not indicate sexuality. e At the time of the interview, Teresa’s state disability claim was under review. Her application has since been granted, increasing her income to about $12,000 per year. Alone Table 3. Four sets of defining criteria for ME. Definig Criteria Ramsay (Ramsay 1988) London Criteria (Dowset, E et al. 1994) Primary Manifestations Exercise-induced fatigue after trivially small exertion, Memory impairment and loss of concentration with other neurological and psychological disturbances, and Fluctuation of symptoms Usually follows an infection Severe fatigue for six months or longer Four of the following: short term memory or concentration impairment, sore throat, tender lymph nodes, muscle pain, multi-joint pain without redness or swelling, headaches of new type, pattern or severity, unrefreshing sleep, and post-exertional malaise lasting more than 24 hours Fatigue, Post-exertional malaise and/or fatigue, Sleep dysfunction, and Pain Two symptoms of Neurological/cognitive manifestations; One symptom from two of three categories: Autonomic, manifestations Neuroendocrine, manifestations, Immune manifestations (Published in 1994 as an update to Homes et al. 1988) Canadian Criteria (Carruthers, BM et al. 2003) Other defining criteria Using the wrong words, Alteration to sleep rhythm or vivid dreams, Frequency of micturition, Hyperacuisis, Episodic sweating, Orthostatic tachycardia Muscular Phenomena, Circulatory Impairment, and Cerebral Dysfunction CDC http://www.cdc.gov/ ncidod/diseases/cfs/a bout/what.htm Other manifestations used as part of diagnosis Onset usually sudden, but can be gradual; Six months for adults and three months for children Table 4. The “Canadian Criteria”. A patient with ME/CFS will meet the criteria for fatigue, post-exertional malaise and/or fatigue, sleep dysfunction, and pain; have two or more neurological/cognitive manifestations and one or more symptoms from two of the categories of autonomic, neuroendocrine and immune manifestations; and adhere to item 7. 1. Fatigue: The patient must have a significant degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level. 2. Post-Exertional Malaise and/or Fatigue: There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. There is a pathologically slow recovery period–usually 24 hours or longer. 3. Sleep Dysfunction:* There is unrefreshed sleep or sleep quantity or rhythm disturbances such as reversed or chaotic diurnal sleep rhythms. 4. Pain:* There is a significant degree of myalgia. Pain can be experienced in the muscles and/or joints, and is often widespread and migratory in nature. Often there are significant headaches of new type, pattern or severity. 5. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, disorientation, difficulty with information processing, categorizing and word retrieval, and perceptual and sensory disturbances–e.g., spatial instability and disorientation and inability to focus vision. Ataxia, muscle weakness and fasciculations are common. There may be overload 1 phenomena: cognitive, sensory–e.g., photophobia and hypersensitivity to noise–and/or emotional overload, which may lead to “crash”2 periods and/or anxiety. 6. At Least One Symptom from Two of the Following Categories: a. Autonomic Manifestations: orthostatic intolerance–neurally mediated hypotenstion (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension; light-headedness; extreme pallor; nausea and irritable bowel syndrome; urinary frequency and bladder dysfunction; palpitations with or without cardiac arrhythmias; exertional dyspnea. b. Neuroendocrine Manifestations: loss of thermostatic stability– subnormal body temperature and marked diurnal fluctuation, sweating episodes, recurrent feelings of feverishness and cold extremities; intolerance of extremes of heat and cold; marked weight change–anorexia or abnormal appetite; loss of adaptability and worsening of symptoms with stress. c. Immune Manifestations: tender lymph nodes, recurrent sore throat, recurrent flu-like symptoms, general malaise, new sensitivities to food, medications and/or chemicals. 7. The illness persists for at least six months. It usually has a distinct onset,** although it may be gradual. Preliminary diagnosis may be possible earlier. Three months is appropriate for children. To be included, the symptoms must have begun or have been significantly altered after the onset of this illness. It is unlikely that a patient will suffer from all symptoms in criteria 5 and 6. The disturbances tend to form symptom clusters that may fluctuate and change over time. Children often have numerous prominent symptoms but their order of severity tends to vary from day to day. *There is a small number of patients who have no pain or sleep dysfunction, but no other diagnosis fits except ME/CFS. A diagnosis of ME/CFS can be entertained when this group has an infectious illness type onset. **Some patients have been unhealthy for other reasons prior to the onset of ME/CFS and lack detectable triggers at onset and/or have more gradual or insidious onset. Exclusions: Exclude active disease processes that explain most of the major symptoms of fatigue, sleep disturbance, pain, and cognitive dysfunction. It is essential to exclude certain diseases, which would be tragic to miss: Addison’s disease, Cushing’s Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia, iron overload syndrome, diabetes mellitus, and cancer. It is also essential to exclude treatable sleep disorders such as upper airway resistance syndrome and obstructive or central sleep apnea; rheumatological disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological disorders such as multiple sclerosis (MS), Parkinsonism, myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis, chronic hepatitis, Lyme disease, etc.; primary psychiatric disorders and substance abuse. Exclusion of other diagnoses, which cannot be reasonably excluded by the patient’s history and physical examination, is achieved by laboratory testing and imaging. If a potentially confounding medical condition is under control, then the diagnosis of ME/CFS can be entertained if patients meet the criteria otherwise. Co-Morbid Entities: Fibromyalgia Syndrome (FMS), Myofascial Pain Syndrome (MPS), Temporomandibular Joint Syndrome (TMJ), Irritable Bowel Syndrome (IBS), Interstitial Cystitis, Irritable Bladder Syndrome, Raynaud’s Phenomenon, Prolapsed Mitral Valve, Depression, Migraine, Allergies, Multiple Chemical Sensitivities (MCS), Hashimoto’s thyroiditis, Sicca Syndrome, etc. Such comorbid entities may occur in the setting of ME/CFS. Others such as IBS may precede the development of ME/CFS by many years, but then become associated with it. The same holds true for migraines and depression. Their association is thus looser than between the symptoms within the syndrome. ME/CFS and FMS often closely connect and should be considered to be “overlap syndromes.” Idiopathic Chronic Fatigue: If the patient has unexplained prolonged fatigue (6 months or more) but has insufficient symptoms to meet the criteria for ME/CFS, it should be classified as idiopathic chronic fatigue. “Overload” refers to hypersensitivities to various types of stimuli that has changed from pre-illness status. “Crash” refers to a temporary period of immobilizing physical and/or mental fatigue. From: Caruuthers et al. 2003. 1 2