Articles sorted by topic: General M.E. articles and research overviews, The outbreaks (and infectious nature) of M.E., The severity of M.E. and M.E. fatalities. Click here to read the full list of topics available.
Before reading the research/advocacy information given in the links below, please be aware of the following facts: 2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.
1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research as ‘only relating to ‘CFS’ patients’ (including research which describes those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.
A very small number of ‘CFS’ studies refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research.
In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.
2. The research referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. Before reading this research it is also essential that the reader be aware of the most commonly used ‘CFS’ propaganda, as explained in A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and in more detail in Putting research and articles on Myalgic Encephalomyelitis into context.
What can cause the onset of Myalgic Encephalomyelitis? M.E. expert Dr Byron Hyde explains that: ‘[The] prodromal phase is associated with a usually short onset or triggering illness. This onset illness usually takes the form of either, or any combination, of the following, (a) an upper respiratory illness, (b) a gastrointestinal upset, (c) vertigo and (d) a moderate to severe meningitic type headache. The usual incubation period of the triggering illness is 4-6 days. (1998 [Online])
There is no link however between having M.E. and being a 'perfectionist' or having a ‘type A’ or over-achiever personality. M.E. is also not caused by a period of long-term or intense stress, trauma or abuse in childhood, becoming run-down, working too hard or not eating ‘right.’ (Carruthers et al 2003). M.E. is not a form of ‘burnout.’
M.E. is three times more common then Multiple Sclerosis. It is also more common than lung cancer, breast cancer, or HIV (in women) with an estimated 2 million sufferers in the US (Bell 1995, p. 231), 250 000 sufferers in the UK and around 36 000 in Australia and many more worldwide. Children and teenagers are also susceptible to the illness and children as young as five have been diagnosed with M.E. One hundred thousand kids are estimated to have M.E. in the US alone (Munson 2000, p. 198) and a recent study in the UK found that M.E. was by far the most common reason for a child’s long term absence from school. (Dowsett 1997 [Online])
There appears to be somewhat of an occupational bias towards teachers (students) and health care workers in the incidence of Myalgic Encephalomyelitis cases (and outbreaks). These higher risk groups do not work in environments which are more stressful than the average job, but these are jobs which require higher rates of immunisation than others. This relationship with inoculation is often seen in infectious illnesses. (Hyde et al. 2002) All ages are affected but most commonly sufferers are under 45 at onset. Women are affected around three times as often as men, a ratio common in autoimmune disorders (although in children the sexes seem to be afflicted equally). M.E. affects all races and socio-economic groups and has been diagnosed all over the world (Hooper et al. 2001 [Online]).
Substantial evidence exists to show that it is simply not possible that somatisation, secondary gain, malingering, aberrent illness beliefs, too much focus on normal bodily sensations, irrational fear of exercise leading to deconditioning, being rich and white, being poor and from an ethnic minority, being lazy and unwilling to work, being too highly driven and perfectionistic and working too hard, faulty thought processes, lack of motivation, long-term stress, acute stress, abuse in childhood, a genetic inability to deal with normal levels of stress, inadequate coping strategies and contagious sociological hysteria – or any or the other ridiculous and often contradictory ‘theories’ put forward by these vested interest groups – play a role in causing or perpetuating authentic M.E.
The psychological or behavioural theories of M.E. are no more scientifically viable than are the theories of a ‘flat earth.’ They are pure fiction. Strong evidence of the biological basis for the illness has existed since the 1930’s and 1950’s and more than 1000 good articles now support the basic premises of M.E. as a debilitating organic neurological illness. Thus this is not simply theory, but is based upon an enormous body of clinical information. Confirmation of this hypothesis is supported by electrical tests of muscle and of brain function (including the subsequent development of PET and SPECT scans) and by biochemical and hormonal assays. Newer scientific evidence is increasingly strengthening this hypothesis. (Hyde 1992 p. xi) (Hyde & Jain 1992 pp. 38 - 43) (Dowsett 2001, 2000, 1999.b, b [Online]) M.E. is not ‘medically unexplained’ (or ‘unexplainable’) and many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research articles. These are well-documented, scientifically sound explanations for why patients are often bedridden and unable to maintain an upright posture (MESA 2005 [Online]).
The reality is that anyone, whether medically qualified or not, who looks at the worldwide published medical evidence on M.E. could not fail to recognise that the psychological or psychiatric theories could not possibly explain the many different and profound physical abnormalities seen in M.E. (nor the many other characteristics of the disease which are not consistent with psychological or behavioural illness). There are only two ways that a person could reach a different conclusion:
The disease category ‘CFS’ has undoubtedly been used to impose a false psychiatric paradigm of M.E. by allying it with various psychiatric fatigue states and various unrelated fatigue syndromes [and stress-realated conditions] (etc).
The Doctor's Guide to CFS by David S. Bell MD
'Stress aggravates symptoms but does not cause them, a condition no different in CFIDS from that in other illnesses. Walking on a twisted ankle may aggravate the pain but did not cause the twisted ankle originally.'
The Clinical and Scientific Basis of Myalgic Encephalomyelitis Edited by Byron Hyde, M.D p. 115
'It is a fact that the majority of M.E. patients are not in high-stress occupations as the popular press frequently suggests, but are teachers, nurses, physicians, and other health care workers. This group represents those most closely related to infectious illness, frequent immunisations and those most frequently immunised.'
'It is a fact that the majority of M.E. patients are not in high-stress occupations as the popular press frequently suggests, but are teachers, nurses, physicians, and other health care workers. This group represents those most closely related to infectious illness, frequent immunisations and those most frequently immunised. This relationship with inoculation is often seen in infectious illnesses.'
'[The] prodromal phase is associated with a usually short onset or triggering illness. This onset illness usually takes the form of either, or any combination, of the following, (a) an upper respiratory illness, (b) a gastrointestinal upset, (c) vertigo and (d) a moderate to severe meningitic type headache. These are only the most common onset illnesses or symptoms of which there are several. The onset illness is associated with either a low grade or subnormal temperature, headaches, sometimes persisting and accentuated by movement with intermittent attacks of vertigo or dizziness. Evidence of a previous immune insult [such as a recent immunisation] is found regularly in both epidemic and sporadic cases. The usual incubation period of the triggering illness is 4-6 days. The second and third phases of the illness are usually always different in nature from the onset illness and usually become apparent within 1-4 weeks after the onset of the infectious triggering illness.'
Hillary Johnson: 'Garbage in, Garbage out'
The likelihood that the CDC was even studying [any] bona fide CFS sufferers is slim to none. As they used to say in the computer industry, GIGO— garbage in, garbage out. Expect more of the same from the CDC where this disease is concerned.
A New and Simple Definition of Myalgic Encephalomyelitis and a New Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic Encephalomyelitis & An Irreverent History of Chronic Fatigue Syndrome Dr Byron Hyde
The unbearable bunkness of stress by Barry Spencer
Additional comments on the CDC/CFIDS Association's 'Faces of CFS' campaign by Jodi Bassett
'Isn't it great? The CDC/CFIDS Association is telling everyone that CFS is 'physical' finally! ...well, actually, no. What they are doing isn't great at all, and although they bandy the word 'physical' about a whole lot, they are actually more in the 'CFS is psychological/behavioural camp than ever before. If you get past the thin veneer of legitimacy implied by the terms 'physical' and genetic abnormalities' etc. that they've put there to bamboozle us into thinking they are finally dealing with the illness sensibly finally, you can see that what they are really saying is: 'CFS is a problem of very mild fatigue caused by normal levels of psychological stress which is best treated by psychotherapy (CBT) and exercise (GET).' Far from this 'finally' being evidence that the CDC/CFIDS Association (basically the same thing thanks to 4 million in funding) has changed and is now trying to help us, this shows that they are actually far more dedicated to the behavioural model than ever before. This new media information is not relevant to M.E. or M.E. equivalent CFS (no surprise there!) but what is really worrying is that it isn't even discussing Fukuda CFS anymore. The CDC seems to have abandoned this definition - which at least mentioned some physical and viral symptoms other than plain old psychiatric 'fatigue' ie. sore throat/glands - in favour of making CFS now solely a problem of fatigue caused by psychological problems. They have re-marketed CFS into a mild post-stress fatigue syndrome. This is why their estimate of the number of sufferers went from 500 000 - 900 000 all the way up to 4 million, seemingly out of nowhere.'
A review of the 2003 clinical case definition by Maryann Spurgin Ph.D. In 1994, a group of government propagandists and psychiatrists on the take from insurance companies created one of the most damaging documents in the fifty-year history of ME/CFS: the 1994 Centers for Disease Control Case Definition. Hillary Johnson was one of the first harshly to criticize the document in her book Osler’s Web, stating that the criteria were too broad and failed to describe the disease with which she and so many of us had been stricken, the disease that caused post-exertional sickness and neurological problems. Instead, it selected heterogeneous fatigue states under the CFS umbrella. This lead to inconsistent research results and inappropriate treatment protocols like cognitive behavioral therapy (CBT) and graded exercise therapy (GET), which caused many patients to become worse.
It didn’t help that in 1988 Holmes et al. had already renamed the disease “chronic fatigue syndrome” – the term “chronic fatigue” makes it easy for those who wish to lump heterogeneous disorders to do so – but the Holmes criteria had at least made an attempt to define a real, existing disease.
The 1994 CDC Fukuda criteria, in contrast, made no such attempt. Obfuscation was the goal, and in 1994 an obfuscatory construct was published with criteria that select everything from tiredness to post-traumatic stress disorder to depression to fibromyalgia to myalgic encephalomyelitis (post-exertional sickness and neurological problems) under their umbrella, diseases that have nothing to do with each other. To make matters worse, so-called “patient representatives” like Kim Kenney of the CFIDS Association (CAA) signed onto to the CDC document with no defense of their constituency, marketing the government document as one of the CAA’s “accomplishments.”
For more information on the real causes of M.E. (and the financial and political motivations behind the false psychological theories of M.E.) see also: What is M.E.?