Posted by Heidi/Mermie Mass hysteria is an inadequate answer because the symptoms of mass hysteria are random, whereas the pattern of symptoms in [ME/ICD-CFS] is remarkably consistent. . . There is a simple way to prove that [ME/ICD-CFS] is not somatisation or malingering. With these latter two conditions there may be numerous variable symptoms, but they are random. In [ME/ICD-CFS] the symptoms are not random- they form a specific pattern. The statistical odds of any two patients describing these symptoms in an identical way are astronomical. Yet patient after patient describes the same symptom complex in [ME/ICD-CFS] . . . If I were to choose a single diagnostic test for this illness, I would give a patient a standard dose of a cyclic antidepressant and observe the response. People with depression do not typically have this type of negative reaction to standard antidepressants. In fact, depressed patients and those with ME/ICD-CFS have little in common. Children with ME/ICD-CFS are not immune to misdiagnosis and mistreatment either: Though school officials and doctors may attribute the child's complaints to psychological causes, they seldom can back up their opinions. School phobia, for example, is a manifestation of separation anxiety. Children with separation anxiety display symptoms when anticipating separation but which resolve when separation does not occur. In [ME/ICD-CFS], symptoms are present not only during school hours, but after school and on weekends as well. Also, symptoms such as fever, lymph node pain, night sweats, and muscle and joint pain are not features of school phobia. Those who are apt to diagnose depression run into the same inconsistencies. . . Children with [ME/ICD-CFS] can become depressed, but usually do so because no one believes they are ill. Although depression plays no part in causing the illness, it is sometimes, but not always, a symptom of the illness. Secondary depression is common in chronic illnesses and mood changes such as irritability, depression or anxiety are common in other brain disorders such as Parkinson's, Multiple Sclerosis or Stroke. Numerous illnesses are associated with secondary depression. For example, patients with malignancies are depressed for the obvious reason that their life is in danger. Secondary depression in patients with serious malignancies is so reasonable and expected that a patient without it would have his or her sanity questioned. Secondary depression is seen in Multiple Sclerosis, Lupus and virtually all other chronic illnesses. Characteristics of major depression, such as feelings of guilt, loss of pleasure in life, etc. are not present in CFS. In addition, children and adolescents represent a higher percentage of patients in CFS than in depression. (Victorian ME/CFS Society) The only thing that people with ME/ICD-CFS are sometimes depressed about, is having ME/ICD-CFS. MYTH: There is no evidence of physical illness in ME/ICD-CFS It's hard to know how to defend this one . Not due to lack of information, but because there is so much, and much as I might like to, I can't show you all of it! Verillo and Gellman make the observation that: 'Contrary to popular belief, [ME/ICD-CFS] is a distinct, recognisable entity that can be diagnosed relatively early in the course of he disease, providing the physician has some experience with the illness' The book 'Stricken' explains: '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, utilising 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. Dr Sheila Bastien, who studied a group of educated patients, was stunned to realise 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."' Dr David Bell M.D. takes issue with reports of "normal" physical examinations as well stating that "Virtually all (CFS) patents will have abnormalities on physical exam." Other abnormalities/deficiencies found so far include (but are not limited to); abnormal chemicals found in urine, autonomic nervous system abnormalities, neuro-endocrine abnormalities, vestibular disturbances, muscle membrane defect, abnormal protein synthesis in muscle, abnormalities in oxidative metabolism, depressed numbers and functions of Natural Killer cells, low levels of circulating immune complexes, abnormalities in number and function of lymphocytes, low levels of several autoantibodies, altered levels of immunoglobulins, RnaseL activity is 'upregulated'. Elevated liver enzymes, Hypothyroid, reduced TSH, low levels of growth hormone, mitochondrial impairment (abnormality in the cells' ability to produce energy) Krebs' cycle abnormalities, decreased amino acids, insulin resistance, extremely low circulating blood volume, elevated red blood cell count, reduced cardiac output, hypercoagulability, abnormal red blood cell membranes, low blood pressure, neurally mediated hypotension and reduced blood flow to the brain ( ME/ICD-CFS] is caused by a virus. NOTE IT IS ALL THE SAME DISEASE his point of view is supported by history ([ME/ICD-CFS] epidemics have followed polio epidemics), incidence (correlation with a flu-like prodromic illness), symptoms (swollen lymph nodes, low-grade fever, sore throat), and similarities with other viral ailments, notably mononucleosis and post-polio syndrome A viral cause is also indicated by research. (Verillo & Gellman p. 19) But there is so much more funding needed; "It is as though researchers can find only the tracks of the beast, while the quarry itself evades capture". MYTH: If you were really ill, you'd look ill ME/ICD-CFS, like many chronic illnesses, is said to be 'invisible'. Michael J. Fox, for example, has Parkinson's, but apart from shaking a bit he looks fine. Appearances can be deceptive. Chronically ill people also often try very hard to hide as much of their illness as possible (until it becomes severe enough to make hiding it impossible at least) wanting to avoid revealing their weaknesses to others, not wanting to appear to be looking for sympathy or to invite negative comments. I think it's human nature to try to put on a good front for others and not to complain much even if things are really difficult. It also lets you pretend to yourself that your health problems are not really happening and gives you a false sense of control over them. With ME/ICD-CFS, people also don't realise that they probably only ever see us at our very best. I used to have to rest completely for 2 weeks so that I would be well enough to sit up and talk for half an hour at my doctor's appointment . I used to collapse immediately after the appointment and it took weeks before I was anywhere near recovered from it. But all my doctor saw was the half hour where I appeared to be almost normal. (Nowadays I am not well enough to see my doctor in person at all). Resting for long periods before and after doing anything at all is a big part of living with ME/ICD-CFS but it's not a part that other people often see. But even when I'm at my best it's obvious that I'm unwell in some way. Sure my cheeks may be rosy, but if you look past that you'll notice that I can't sit upright for more than a few minutes, that if I stand up for a minute or longer my feet often turn purple, that my hair hasn't been brushed for weeks because I can't lift a brush, that I am wearing a singlet top despite the fact that it's winter, that I've put on 30 kilos despite not eating much except vegetable soup, that I forget the point of what I am saying in every second sentence and forget basic words just as often and I can't stand anything more than very dim light or tolerate normal noise levels among other things. Of course these things vary person to person but I think there will always be some outward signs of illness. It is said that we appear 'normal' but I think we only appear normal if you don't look very hard. I think people see what they want to see. MYTH: ME/ICD-CFS is something that just affects a few middle class people In the early days of ME/ICD-CFS it took repeated doctors visits and persistence to finally be diagnosed with the condition (little was known about it by most doctors) this was a luxury only the rich could afford and so ME/ICD-CFS became known as a middle or upper middle class ailment, a profile that had nothing to do with fact but rather on the way the medical system worked and the way the data was collected. As Griffin explains: '
on 8/27/2007, 4:22 am
If [ME/ICD-CFS] is mental illness, why does it occur in epidemics?
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