Copyright © by Jodi Bassett October 2005 on www.ahummingbirdsguide.com
This version updated January 2007

Just like any other field where many billions of dollars are at stake, the areas of science, medicine and healthcare are as open as any other to clever manipulation by those with something to gain either financially or politically by skewing and misrepresenting the facts. Research into Myalgic Encephalomyelitis (M.E. or ICD-CFS) is a prime example of this.

It is because of the enormous amounts of money at stake that the charade that M.E. could be a psychiatric or behavioural disorder or even a ‘belief system’ continues; not because there is good scientific evidence (or indeed any evidence) for it, or because the evidence proving organic causes and effects is lacking – but because such a view is so financially and politically convenient and profitable on such a large scale to a number of powerful corporations and Government departments.

Scientifically however, these theories and ideas have been utterly discredited and disproven decades ago (and literally more than a THOUSAND times over since then) and are no more scientifically viable than are those of a ‘flat Earth.’

What follows are explanations of the scientific reality behind some of the most commonly used myths and propaganda concerning M.E.:

"…the primary symptom is severe fatigue…"

The defining feature of M.E. is not fatigue or tiredness. M.E. is characterised primarily by damage to the central nervous system (the brain) which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis. The ‘f’ word was selected in 1988 entirely for what it could achieve politically: it was never intended to be a genuine medical description of the symptomatology of this illness. Understanding of this illness would be greatly advanced if the misleading and confusing practice of using such inaccurate terms such as fatigue (or tiredness or low energy) were to be immediately stopped by all legitimate M.E. researchers and advocates. (Patients and patient groups who want to "change the name" must first take responsibility to accurately describe the symptomatology).

"…..symptoms are vague, there are no physical signs and so diagnosis is very difficult…"

There are in fact a variety of physical signs in M.E. patients as well as a series of tests which can be done to confirm a suspected M.E. diagnosis and symptoms may indeed be clearly articulated. If a physician has some experience with the illness, M.E. is not a difficult illness to diagnose (and may be diagnosed very early in the disease) and non fatigue-based definitions such as the Canadian Criteria and the Nightingale definition of M.E. now make diagnosis easier than ever before; even for those with no experience with the illness.

Whilst various ‘fatiguing conditions’ with a variety of different aetiology’s may be made up of vague and mild ‘everyday’ type symptoms, have no physical signs and no tests which can aid diagnosis, M.E. is a distinct neurological illness with a distinct list of symptoms, physical signs and diagnostic (and other) tests. It bears no relationship with such unrelated ‘fatiguing conditions.’

The fact that there is as yet no single test which can diagnose the illness is often written in a way which implies that there are NO lab tests anywhere which have ever shown anything at all being organically abnormal in any M.E. patients. This is simply an absurd claim. While there is no SINGLE test which can confirm a suspected M.E. diagnosis, there are a SERIES of tests which can.

Furthermore, hundreds of different studies have found measurable and in some cases extremely severe abnormalities in many different bodily systems of M.E. patients. M.E. is a distinct illness which can be easily diagnosed by careful analysis of a patients symptomatology, looking for some of the physical signs of M.E. and also performing a series of specific tests. Tests will only all be normal in M.E. – as with all illnesses – if completely the wrong tests are done.

"…despite the illness receiving extensive funding for research….."

Statements which imply that there has been extensive genuine research into the biomedical facts of the illness yet that there have been only scant results to be found are utterly divorced from reality. The exact opposite is true. M.E. is a comparable illness physically to Multiple Sclerosis and yet M.E. research receives less than 10% of the level of government funding that MS does. To make matters worse, most of the small amount given to ICD-CFS research is wasted doing vague studies on ‘fatigue’ that have no relevance to M.E. patients. Indeed it is miraculous that so much good research has turned up given the meagre funding and many other drawbacks, which speaks to the seriousness of the disease.

"…it is a mysterious, baffling, medically unexplained illness…" "the illness transcends the boundaries between the mind and the body like no other…"

The ‘bio psychosocial’ approach is just a new way of pushing the same old fatally flawed psychiatric theories yet again. M.E. is no more a bio psychosocial illness than Multiple Sclerosis, Parkinsons or any other organic neurological disease. M.E. is also no more 'mysterious,' ‘baffling’ or ‘medically unexplained’ than either of these illnesses. Many aspects of the pathophysiology of the disease have, indeed, been medically explained in volumes of research. These are well-documented, scientifically sound explanations for why patients are often bedridden and unable to maintain an upright posture.

"…of course every patent's anxiety and depression must be treated first…"

It is often assumed that 100% of all patients with M.E. suffer with significant levels of anxiety and depression. In fact, studies have shown the depression rates in M.E. patients to be similar to those of Multiple Sclerosis or Rheumatoid Arthritis patients. The figure is in reality nowhere near even 50%, let alone 100%. Many researchers compound this error by also writing as if psychiatric or 'behavioural' causation of the illness has also been legitimately proven. The key word here is ‘legitimately.’ Therapies based upon these flawed theories are also often written about as if they have been legitimately proven to be effective (CBT and GET for example). The key word here is again, 'legitimately.'

Most studies (an estimated 90% at least) which use the name CFS are not concerned with M.E. equivalent CFS; ICD-CFS. The Oxford criteria for CFS for example, only requires that a person experience fatigue for the diagnosis to be made; therefore what is truly being studied are merely patients with ‘fatigue.’ None of the CFS definitions defines or describes M.E. nor any other distinct illness named ‘CFS.’ All each of these flawed definitions ‘define’ is a heterogeneous population of people with various misdiagnosed psychiatric and miscellaneous non-psychiatric states with little in common but the symptom of fatigue.

Patients being studied are almost exclusively those in the mild – to possibly moderate in some cases – range of M.E. severity. A recent study showed that more than 99% of all studies on M.E. or ICD-CFS involved such patients. The ‘mild’ abnormalities shown in some studies may mean that whatever is being tested for is not relevant to the pathology of M.E., but they may also merely be indicative of the fact that mildly ill patients will often show only mild abnormalities. This must always be kept in mind when reading research.

The word ‘syndrome’ completely changes the meaning of the words preceding it. People with chronic fatigue may be tired because of cancer, Multiple Sclerosis, vitamin deficiency, a sleep disorder, depression or a large number of other causes. Up to 20% of the population may have some form of chronic fatigue. People with chronic fatigue SYNDROME however, according to the World Health Organization (WHO), have a distinct and debilitating acquired illness synonymous with M.E. which has been recognised as an organic neurological disorder by the WHO with the code G93.3 since 1969. Less than 1% of the population has M.E. equivalent chronic fatigue SYNDROME (ICD-CFS).

When the word SYNDROME is omitted you are talking about two entirely different and completely unrelated patient groups as if they were exactly the same in every way. It makes what is being written utterly nonsensical.

"…cancer patients also experience severe fatigue, so…."

Many studies which misrepresent the main feature of the illness as ‘fatigue’ then go on to compound this error by comparing and discussing the legitimate fatigue experienced by patients with many other illnesses as if this had relevance. As the word fatigue is being misused in being applied to M.E. patients, studies on the level of fatigue in other illnesses and how this can be improved have absolutely no relevance to defining the symptomatology or pathology of M.E., and vice versa.

OMISSIONS:

Sometimes it is what studies and other writings on M.E. don’t say that is every bit as misleading as the false and misleading statements which are used. These include:

1. The deaths from M.E. are almost always omitted, as is the true (and brutal) severity of the illness and the true rates of recovery (which are unfortunately nowhere near the 100% often claimed).

2. The more than 60 outbreaks of M.E. recorded worldwide are almost always omitted.

3. The long history of M.E. research is often omitted (the illness did not just suddenly appear in the 1980’s for the first time).

4. The enormous amount of solid and credible research irrefutably proving organic and severe illness in M.E. patients (some of it in existence from as far back as the 1930’s and 1950’s) is often omitted completely.

5. The real constellation of symptoms is also rarely mentioned with many articles listing only some of the very minor symptoms as if these are what characterise the illness (while omitting much or even all of the true symptomatology).