Because of the politics and financial interests involved in M.E. research it is vitally important that before you read anything about the illness that you understand the context in which it was written. Putting Research and Articles on ME into Context looks at the scientific facts which easily disprove the propaganda surrounding M.E. in so many research studies and articles.

For example, it has recently been uncovered that some of the worlds most influential and prolific authors of studies (and many media reports and governmental advisory papers) which have supposedly showed the illness to be a purely psychiatric or ‘behavioural’ condition have been hiding long-held ties and loyalties to the powerful health insurance industry. This is an industry which stands to lose literally billions of dollars (and possibly even face financial collapse) if M.E. is ever fully formally recognised as the severely debilitating infectious organic neurological disease that it is. (Reference) (Reference)

As Professor Malcolm Hooper explains:

This is why 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 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 with vested interests. (Reference).

There simply is no legitimate and scientifically motivated debate about whether or not M.E. is a ‘real’ illness or not, or whether or not it is ‘behavioural’ or has a biological basis. 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 1930s and 1950s and more than 1000 good articles now support the basic premise of M.E. as a debilitating organic neurological illness. 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 and by biochemical and hormonal assays. Newer scientific evidence is increasingly strengthening this hypothesis.

M.E. is not ‘medically unexplained’ (or ‘unexplainable’). 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. (Reference)

Substantial evidence also exists to show that it is simply not possible that somatisation, secondary gain, malingering, aberrant 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. (Reference)

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:

1. Bias due to vested political or financial (or other) interests
2. Lack of access to a truly representative selection of the evidence (ie. an individual has only availed themselves of the pseudo-science provided by financial stakeholders and not a representative selection (or indeed any) of the legitimate and unbiased science before forming an opinion on the illness.)

Under the cover of ‘CFS’ these vested interest groups have assiduously attempted to obliterate recorded medical history of Myalgic Encephalomyelitis; even though the existing evidence and studies were published in prestigious peer-reviewed journals and span over 70 years The only way forward for M.E. patients and all those patients misdiagnosed with ‘CFS’ (both of which are denied appropriate support, diagnosis and treatment) is that the disease category of ‘CFS’ must be abandoned completely (Reference).

(True M.E. experts such as Dr. Elizabeth Dowsett MD, Dr Byron Hyde MD, and the late Dr Melvin Ramsay MD. (and many others) however have easily been able to see through the ‘CFS’ nonsense and have continued to study authentic M.E. and to add to what we know about M.E., without tainting their work with this propaganda. Not everyone was taken in by the ‘CFS’ insurance scam thankfully! Legitimate unbiased M.E. experts and researchers do exist, and their numbers continue to grow, albeit much more slowly than is needed.)

Because of the politics involved in every aspect of M.E., the vast majority (an estimated 95%, at least) of what is written about the illness has little or no relationship with the scientific reality of M.E. In fact, it is not uncommon to read widely redistributed articles made up entirely of such mistruths and propaganda! For this reason it is vital that all writings on M.E. are put into context.

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

• To read more information on this topic see: What is ME? What is CFS? Information for Clinicians & Lawyers and also Smoke and mirrors, The misdiagnosis of CFS and What is M.E.? (on this site), 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 and The Complexities of Diagnosis and The Nightingale Definition of M.E.
• See also: Worldwide Epidemic, Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis (174 pages), Research into ME - 1988-1998 Too much PHILOSPHY and too little BASIC SCIENCE! A Rose By Any Other Name, and Redefinitions of ME. Many more relevant papers are also available in the Research and Articles section.
• The definitions of CFS do not define M.E. but because an outbreak of M.E. in the US was labelled as being ‘CFS’ at the time (and for other reasons to do with political considerations), some researchers have produced valuable research into M.E. under the name ‘CFS.’ The vast majority (an estimated 95%) of ‘CFS’ research however, does not involve M.E. patients and is not relevant in any way to M.E. patients. So sometimes the term ‘ICD-CFS’ is used to refer to those studies and articles which while they use the term ‘CFS’ do relate in some way (in whole or in part) to people with authentic Myalgic Encephalomyelitis – as per the World Health Organization’s classification of M.E. as an organic neurological disorder at G.93.3 It should be noted however, that virtually all of the research which does relate to M.E. but which uses the term and definition of ‘CFS’ (or ME/CFS, or CFIDS etc.) is also contaminated in some way by CFS propaganda. For more information on some of the most common inaccuracies and ‘CFS’ propaganda included in ‘ICD-CFS’ research see the sections below:

The defining feature of Myalgic Encephalomyelitis is not fatigue (or tiredness or a lack of 'energy' or 'poor stamina'). M.E. is characterised primarily by viral 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 (Reference). The ‘f’ word was selected entirely for what it could achieve politically: it was never intended to be a genuine medical description of the symptomatology of this illness (Reference).

Some push the concept of ‘fatigue’ entirely as a tool to try to incorrectly place M.E. into the realm of the psychiatric, while others use it in a more complex way: if you asked the author to explain what was meant by the word they would describe something that bore no relation to any known definition of fatigue – but yet they use the word anyway simply because others with vested interests so often do so, causing obvious confusion. Understanding of this illness would be greatly advanced if this misleading and confusing practice were to be immediately stopped by all legitimate researchers and advocates. As The M.E. Society of America explain "Symptoms can be described in specific, accurate terminology without reference to broad or demeaning term[s] such as "fatigue" or "poor stamina." (Reference).

• See ME is not fatigue, Testing for Myalgic Encephalomyelitis, The Nightingale Definition of M.E. Fatigue Schmatigue, and M.E. is not defined by 'fatigue' for more information.

All three of these statements are false. 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 (Reference). Once a physician has some experience with the illness, M.E. is not at all a difficult illness to diagnose and non fatigue-based definitions such as the Nightingale definition of M.E. now make diagnosis easier than ever before; even for those with no experience with the illness. The illness may also be diagnosed relatively early in the course of the disease (eg. after just 2 weeks). Claims that the illness can only be diagnosed after 6 months have passed are absurd and not based on any observation relevant to actual M.E. patients (along with virtually the entirety of each of the different ‘CFS’ definitions).

• See Testing for Myalgic Encephalomyelitis and The Nightingale Definition of M.E. for more information.

It is true that the many different definitions of ‘CFS’ which have been created are merely diagnoses of exclusion. But these definitions do not define M.E. (nor any other distinct disease) 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 tests which can help to confirm the diagnosis. The illness has several unique features and a unique neuro-hormonal profile. M.E. is NOT a diagnosis of exclusion as ‘CFS’ is.

• See Testing for Myalgic Encephalomyelitis, The misdiagnosis of CFS and The Nightingale Definition of M.E. for more information.

The fact that there is as yet no single test which can diagnose M.E. 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 or damaged in any M.E. patients. This is simply an absurd claim. The truth is that while it is true there is no SINGLE test which can confirm a suspected M.E. diagnosis in 100% of cases, there are a SERIES of tests which can (Reference). Furthermore, hundreds of different studies (some dating back to the 1950s or earlier) have found measurable and in some cases extremely severe abnormalities in many different bodily systems of M.E. patients (Reference). All tests will only come back normal – as with all illnesses – if completely the wrong tests are done, or if those tested do not in fact have Myalgic Encephalomyelitis in the first place.

(This is also why many researchers find different or inconsistent results – because they use different and inconsistent patient groups, see: The Definitions of ME, The misdiagnosis of CFS and Smoke and mirrors for more information. In addition, the loose and over-inclusive diagnostic criteria themselves (along with a politically motivated lack of funding) are likely also largely responsible for that lack of a single diagnostic test).

Some of the series of tests which can (in combination) help to confirm a M.E. diagnosis include:

• SPECT and xenon SPECT scans of the brain
• MRI and PET scans of the brain
• Neurological examination and the Romberg or tandem Romberg test
• Various tests of the immune system
• Insulin levels and glucose tolerance tests
• 24 hour Holter monitor
• Tilt table examination, exercise testing and chemical stress tests, and
• Physical exam

• See Testing for Myalgic Encephalomyelitis, The misdiagnosis of CFS and The Nightingale Definition of M.E. for more information. See also ‘The saga of Royal Free Disease’ by Melvin Ramsay MD and The Clinical and Scientific Basis of Myalgic Encephalomyelitis for more information. See also Defining M.E., What is ME? What is CFS?, M.E: The Medical Facts
• See also: Worldwide Epidemic, and Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis (174 pages)

Statements which imply that there has been generous funding and 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 as indeed the exact opposite is true. M.E. is a comparable illness physically to Multiple Sclerosis and yet ‘CFS’ research receives less than 10% of the level of government funding that MS does. A recent article explained that ‘Breast cancer is diagnosed in 26 women per 100,000 and receive $716 million dollars in government research funds; lung cancer is diagnosed in 63 women per 100,000 and receives $300 million in government research funds; HIV is diagnosed in 125 women per 100,000 and receives $2921 million in government research funds; and CFS is diagnosed in anywhere from 300-540 women per 100,000 and receives $6 million in government research funds. Research funding for CFS [in the US] is about 107th out of 110 diseases funded (Reference).

To make matters worse, much of even that small amount given to ‘CFS’ research is wasted doing vague studies on ‘fatigue’ that have absolutely no relevance to M.E. patients (or indeed to any other distinct patient group). M.E. is in reality one of the most poorly funded illness today; considering its brutal severity and the vast numbers of patients involved, this is a worldwide disgrace. As The M.E. Society of America explains: "It is miraculous that so much good research turned up given the [many drawbacks], which speaks to the seriousness of the disease" (Reference).

• Governments worldwide currently spend 0$ a year on M.E. research. To make a donation to M.E. research see: Donations.

The ‘biopsychosocial’ theory is just a new way of pushing the same old flawed and disproven psychiatric theories yet again, under the guise of pseudo-legitimate science. Again, those who advocate this theory are also studying patients with ‘fatigue’ and not those with actual M.E. M.E. is no more a uniquely biopsychosocial illness than Multiple Sclerosis, Parkinson’s or any other organic neurological disease. M.E. is also no more 'mysterious' or ‘baffling’ than either of these illnesses. As patient advocates Margaret Williams and Eileen Marshall explain:

As The M.E. Society of America writes: "Unlike somatisation disorder, M.E. is not "medically unexplained." M.E. is a disease which, like lupus, has no single marker. 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." (Reference).

• The CBT and GET database is a comprehensive guide to the use of CBT and GET on patients with Myalgic Encephalomyelitis. It contains excerpts and links to literally hundreds of articles and research studies which expose the lack of scientific legitimacy (and the hidden financial and political motivations) underlying the 'behavioural' or ‘biopsychosocial’ paradigm of M.E. and the use of these inappropriate interventions. The effects of CBT and GET on patients with Myalgic Encephalomyelitis looks at the physical effects of CBT (psychotherapy) and GET (graded exercise) on patients with M.E.
• See also What is ME? What is CFS? Information for Clinicians & Lawyers and M.E: The Medical Facts and the excellent book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis

It is often assumed that all patients with M.E. suffer with significant levels of anxiety and depression (Reference). Levels of depression reported in M.E. populations vary, but the figure is nowhere near even 50%, let alone 100%. Studies have shown the depression rates in M.E. patients to be comparable to those of Multiple Sclerosis or Rheumatoid Arthritis patients (Reference). Many researchers compound this error by also writing as if some level of 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.'

• This is a key issue, or perhaps the issue facing M.E. advocates and researchers today and as such many articles on this topic are available. To read more information on this topic see: Smoke and mirrors, The misdiagnosis of CFS and What is M.E.? (on this site), M.E. Fatalities, 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 and The Complexities of Diagnosis and The Nightingale Definition of M.E. Research into ME - 1988-1998 Too much PHILOSPHY and too little BASIC SCIENCE! A Rose By Any Other Name, and Redefinitions of ME.
• Many more relevant papers are also available in the Research and Articles section. See also What is ME? What is CFS? Information for Clinicians & Lawyers and also What is M.E.? (on this site), Worldwide Epidemic, Research into ME - 1988-1998 Too much PHILOSPHY and too little BASIC SCIENCE! A Rose By Any Other Name, and Redefinitions of ME. Many more papers are also available throughout the Research and Articles section.

Most studies which use the name CFS are not in any way concerned with the illness known since 1956 as Myalgic Encephalomyelitis. The two terms are NOT synonymous. The Oxford criteria for CFS for example, only requires that a person experience the symptom of fatigue for the diagnosis to be made. Therefore, when ‘CFS’ studies are done using the Oxford criteria, what is being studied are merely patients with ‘fatigue’, and not M.E. (Obviously there is a basic misunderstanding of the meaning of the word ‘syndrome’).

There are more than nine different definitions of CFS. The Fukuda and Australian CFS definitions are very similar to the Oxford definition. None of them describes M.E. or any other distinct illness. It is so important that the results from studies using these broad and inclusive and fatigue-based definitions are not thought to apply to patients with M.E., or with M.E. equivalent CFS (as per the World Health Organisation’s ICD Classification). Despite the confusing sharing of the name ‘CFS,’ such groups are apples and oranges. As The M.E. Society of America write, ‘We must understand that disease entities are facts and phenomena, while names and case definitions are mere human constructs. Some constructs are more accurate than others. Some select a different population than others.’

As M.E. expert Dr Byron Hyde MD explains:

All a diagnosis of ‘CFS’ actually means is that the patient has a gradual onset fatigue syndrome which is usually due to a missed major disease. As Dr Byron Hyde M.D. explains, the patient has:

• See Testing for Myalgic Encephalomyelitis, The misdiagnosis of CFS and The Nightingale Definition of M.E. for more information. See also What is ME? What is CFS? Information for Clinicians & Lawyers and M.E: The Medical Facts and the excellent book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis See also ME and CFS, the Definitions, A Rose By Any Other Name, and Redefinitions of ME. for more information, as well as the Definitions of M.E. section on this site.

It should always be kept in mind when reading through research into M.E. that the patients being studied are almost exclusively those in the mild – to possibly moderate in some cases – range of severity. A recent study by MERGE showed that more than 99% of all studies on M.E. involved such patients and that even in those few studies which did claim to be studying severe M.E. patients, the patients were still a long way from being the most severely ill (Reference).

For example, two recent studies looked at reduced blood volume in M.E. patients. The first study used the standard revised CDC criteria which has been shown to select for mildly ill (and non-M.E.) patients (Reference), while the second study conducted by an experienced M.E. specialist (David S. Bell, M.D) and was conducted using some of his more severely ill patients. The first study found ‘an insignificant trend towards low blood volume of 9%.’ The second study found that ‘In some individuals this abnormality was strikingly severe. Patient #15, for example, had an RBC mass of 12.9 mL/Kg, which is 46% of the expected normal, and a total blood volume of 35.8 mL/Kg, which represents 49.7% of the expected normal value.’ (Reference) There are many other examples of this: reports of only very mild hypocorticolism (in mildly ill patients) while some severely ill patients have cortisol levels which are dangerously low and require urgent medical attention. Many studies report only mild intellectual disability in M.E. patients while those who have studied the severely ill describe over and over again patients who are unable to read or write, speak or understand speech or even to recognise close family members. Some patients who used to hold professional jobs requiring university degrees pre-illness, now almost meet the legal definition of ‘idiocy’ – this is hardly a ‘mild intellectual disability.’ The list goes on.

The ‘mild’ abnormalities found 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 – unsurprisingly – often show only mild abnormalities. It is important in the future that the severity of each patient’s illness is recorded in each study, and that more studies are done using severely ill sufferers.

• See The severity of M.E. and for more information, as well as the Definitions of M.E. section on this site.

The terms ‘CFS’ and ‘chronic fatigue,’ despite the many useless and fatigue-based definitions of CFS, CANNOT be used interchangeably. It is one thing to misunderstand the meaning of a word, but it is another entirely to write as if a word had no meaning at all. Far from the word ‘syndrome’ having no meaning, it is in fact quite a powerful word – the use of the term completely changes the meaning of the words preceding it. In medicine, the term syndrome means ‘a collection or group of symptoms.’ Thus you simply cannot have a syndrome which has only one symptom or characteristic.

For example, recent studies have shown that (among other measures) avoiding both second-hand cigarette smoke and sleeping while lying on the stomach greatly reduce the incidence of sudden infant death SYNDROME (or SIDS). Such measures however, are useless in preventing sudden infant deaths from other causes such as drowning, choking or car accidents. The use of the word SYNDROME completely changes what is being discussed, it makes it clear that it is a specific type of sudden infant death with many other associated signs and symptoms which is being discussed and not just sudden infant deaths in general. Clearly the word SYNDROME changes the meaning completely. Chronic fatigue, ‘CFS’ and M.E. are not the same.

• People with chronic fatigue may be tired because of cancer, Multiple Sclerosis, vitamin deficiency, a sleep disorder, depression or a large number of other reasons. Fatigue or chronic fatigue is a symptom of many illnesses. Up to 20% of the population may currently suffer from some form of chronic fatigue.
• Chronic Fatigue Syndrome is a man-made construct created in the US in 1988. It is not a distinct disease, but a mere diagnosis of exclusion based on the presence of the symptom of medically unexplained fatigue. CFS cannot be diagnosed until after 6 months have passed. If serious abnormalities are found on testing, a person no longer qualifies for a diagnosis of ‘CFS.’ (The fatigue in ‘CFS’ is ‘medically unexplained.’) The onset of ‘CFS’ may be gradual or acute. A diagnosis of ‘CFS’ does not mean that a person has any distinct disease, including M.E. In essence, every diagnosis of CFS can only ever be a misdiagnosis. ‘CFS’ is made up of people with a vast array of unrelated psychological and non-psychological illnesses. 2.54% (or more) of the population may qualify for a ‘CFS’ (mis)diagnosis (according to the latest CDC estimates).
• Myalgic Encephalomyelitis is a systemic acquired illness initiated by a virus infection which is characterised by (scientifically measurable) damage to the brain stem which results in dysfunctions and damage to almost all vital bodily systems and a loss of normal internal homeostasis. The onset of M.E. is always acute. M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can always be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct. M.E. can occur in both epidemic and sporadic forms and can be extremely disabling, or sometimes fatal. M.E. is a chronic/lifelong disease that affects adults and children. Fatigue is not a defining symptom of M.E., nor even an essential symptom of M.E. There are more than 64 M.E. symptoms. People with M.E would give anything to instead only be severely ‘fatigued’ or tired all the time. Far fewer than 0.5% of the population has the distinct and testable neurological disease known since 1956 as M.E.

It makes what is being written utterly nonsensical if the terms 'chronic fatigue' and 'chronic fatigue SYNDROME' and ‘Myalgic Encephalomyelitis’ are used interchangeably. This very common error is so disturbing because it originates not from the widespread dissemination of propaganda on M.E., but is instead due at least in part to a surprising lack of the most basic understanding of language in today’s supposedly well educated journalists and researchers.

• See Smoke and mirrors and The misdiagnosis of CFS for more information. See also the Definitions of M.E. section on this site, What is ME? What is CFS? Information for Clinicians & Lawyers and also What is M.E.? (on this site) A Rose By Any Other Name, and Redefinitions of ME. Many more papers are available on this topic throughout the Research and Articles section.

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 and tiredness experienced by patients with many other illnesses as if the two patient groups were experiencing the same symptom. This is not the case as the word fatigue is being misused in being applied to M.E. patients. The main symptom of M.E. is not fatigue and so it is a case of apples being compared with oranges yet again. Studies on the level of fatigue in other illnesses and how this can be improved have absolutely no relevance to 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 propaganda and other false and misleading statements which are used. One can only imagine that such facts are omitted simply because each of them alone so easily disproves the psychological or ‘behavioural’ theories of M.E.. They include (but are not limited to):

Mentions of the deaths from M.E. are almost always omitted, as is the true severity of the illness and the actual recovery rates. Many sufferers are extremely ill and housebound, wheelchair-bound or bedbound for many years with M.E. yet the effects of the illness are usually portrayed as being uniformly ‘mild.’ (Even moderately ill sufferers are rarely described let alone the severe). As The M.E. Society of America writes: "Many cases of M.E. are progressive and degenerative (around 30% of cases), and some have led to complications that were terminal. (Reference). The true rates of recovery from M.E. are also usually omitted (recovery rates are often vastly overestimated, or even claimed to be 100%, which unfortunately does not reflect reality.)

• See M.E. Fatalities, THE LATE EFFECTS OF ME and the excellent book: The Clinical and Scientific Basis of Myalgic Encephalomyelitis and The severity of M.E. for more information.

The more than 60 recorded outbreaks of M.E. worldwide since 1934 are often (almost always) completely ignored and omitted. (Reference).

• For more information see: The outbreaks (and infectious nature) of M.E., (this page contains links to many different relevant books and articles).

The long history of Myalgic Encephalomyelitis research which goes back to 1934 is often omitted – the illness did not just suddenly appear in the 1980s for the first time as many articles falsely claim.

The existence of an enormous amount of solid and credible research proving organic and severe illness in M.E. patients going back to the 1930s and 1950s is also often omitted completely. (Reference)

• See the excellent book by Dr Byron Hyde et al: The Clinical and Scientific Basis of Myalgic Encephalomyelitis for more information as well as What is ME? What is CFS? Information for Clinicians & Lawyers, What is M.E.? (on this site), Illustrations of Clinical Observations and International Research Findings from 1955 to 2005 that demonstrate the organic aetiology of Myalgic Encephalomyelitis (174 pages) and Worldwide Epidemic. Many more papers are available on this topic throughout the Research and Articles section.

The real constellation of symptoms is rarely mentioned. Many articles list only some of the very minor symptoms as if these are what characterise the illness – symptoms such as a sore throat, headaches and joint aches (and the ubiquitous ‘fatigue’) while omitting many more serious and common symptoms such as seizures, paralysis, neurally mediated hypotension, tachycardia and other severe cardiac abnormalities, severe cognitive deficits and many more.

The damage to the central nervous system which truly characterises the illness and causes a loss of homeostasis and problems with dealing with certain levels of physical activity, cognitive exertion, orthostatic stress, sensory stress or infectious stress are likewise rarely even mentioned. This gives a false sense of the realities of the illness as such descriptions bear little or no relationship to the type and severity of illness patients are actually experiencing. Individual symptoms of Myalgic Encephalomyelitis include:

What characterises M.E. every bit as much as the individual neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms is also the way in which people with M.E. respond to physical and cognitive activity, sensory input and orthostatic stress, and so on. In other words, the pattern of symptom exacerbations, relapses and of disease progression. The way the bodies of people with M.E. react to these activities/stimuli post-illness is unique in a number of ways. Along with a specific type of damage to the brain (the central nervous system) this characteristic is one of the defining features of the illness which must be present for a correct diagnosis of M.E. to be made.

A. People with M.E. are unable to maintain their pre-illness activity levels. This is an acute change; M.E. patients can only achieve 50%, or less, of their pre-illness activity levels post-M.E.

B. People with M.E. are limited in how physically active they can be but they are also limited in similar way with; cognitive exertion, sensory input and orthostatic stress.

C. When a person with M.E. is active beyond their individual (physical, cognitive, sensory or orthostatic) limits this causes a worsening of various neurological, cognitive, cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, muscular, gastrointestinal and other symptoms.

D. The level of physical activity, cognitive exertion, sensory input or orthostatic stress needed to cause a significant or severe worsening of symptoms varies from patient to patient, but is often trivial compared to a patient’s pre-illness tolerances and abilities.

E. The severity of M.E. waxes and wanes throughout the hour/day/week and month.

F. The worsening of the illness caused by overexertion can be acute, but often does not reach its peak until 24 - 48 hours (or more) later.

G. If people with M.E. push past their individual limits too deeply or too often, the effects of overexertion can also accumulate over longer periods of time and lead to disease progression, or death.

H. The activity limits of M.E. are not short term, a gradual (or sudden) increase in activity levels beyond a patient’s individual limits can only cause relapse, disease progression or death in patients with M.E.

I. The symptoms of M.E. do not resolve with rest. The symptoms and disability of M.E. are not just caused by overexertion, there is also a base level of illness which can be quite severe even at rest.

J. Repeated overexertion can harm your chances for future improvement in M.E. M.E. patients who are given advice to rest in the early stages of the illness (and who avoid overexertion thereafter) have repeatedly been shown to have the most positive long-term prognosis.

L. Not every M.E. sufferer has ‘safe’ activity limits within which they will not exacerbate their illness, this is not the case for the very severely affected.

• See Testing for Myalgic Encephalomyelitis, The misdiagnosis of CFS and The Nightingale Definition of M.E. for more information, plus The Comprehensive M.E. Symptom List

1. MYTH: M.E. is a new illness that appeared for the first time in the 1980s
2. MYTH: M.E. never occurs in outbreaks
3. MYTH: M.E. is an illness whose primary and defining feature is chronic fatigue; it is a fatiguing illness
4. MYTH: People suffering with chronic fatigue or ‘CFS’ have mild M.E.
5. MYTH: All studies or articles which use the terms M.E. or CFS are discussing the same patient group
6. MYTH: Fibromyalgia and M.E. are basically (or exactly) the same illness: fatigue is the worst symptom of M.E. and in Fibromyalgia the worst symptom is always pain and that's really the only way you can tell which one you have (as they are so similar). M.E. is also basically (or exactly) the same illness as Lyme disease and Gulf War Syndrome, Multiple Chemical Sensitivity Syndrome etc.
7. MYTH: M.E. is a mild illness from which every person will eventually completely recover and is never progressive or fatal
8. MYTH: M.E. has been scientifically proven to be caused by psychological factors
9. MYTH: M.E. is a 'mysterious' illness with many 'medically unexplained' symptoms and seems to ‘transcend the boundaries between the body and the mind’ like no other. Despite the wide array of symptoms no research exists which shows that M.E. has a physical or organic basis
10. MYTH: M.E. is consequent from an organic (viral) trigger but the illness is short lived unless there are psychological and social factors which perpetuate the illness long term
11. MYTH: It is only recently that researchers have finally shown that M.E. has a physical or organic basis
12. MYTH: Only very mild abnormalities have ever been found in M.E. patients
13. MYTH: M.E. is strongly associated with (or related to) depression
14. MYTH: M.E. is perpetuated by deconditioning and inactivity. The only treatments shown to be useful in treating M.E. are CBT (cognitive behavioural therapy) and GET (graded exercise therapy). CBT/GET treatments are useful in 'rehabilitating' M.E. sufferers. These treatments are also completely safe for sufferers and there is no risk of these therapies worsening the illness in the short or long term
15. MYTH: All laboratory tests will always come back normal in M.E. patients and so there are no tests that can be done which can confirm a suspected M.E. diagnosis. Diagnosis is extremely difficult
16. MYTH: M.E. is only a diagnosis of exclusion, a wastebasket diagnosis
17. MYTH: M.E. can not be diagnosed until after 6 months have passed
18. MYTH: There are never any observable physical signs of illness in M.E., it is an ‘invisible illness’
19. MYTH: M.E. primarily affects white, affluent and well-educated women more than any other group
20. MYTH: There are no children who have M.E.
21. MYTH: Most people (or everyone) with M.E. has a ‘type A’ or perfectionist personality and this has caused the illness or made them more susceptible to the illness or perpetuated the illness
22. MYTH: M.E. can result from becoming run down physically or is the end result of high levels of stress, long term stress, burnout, adrenal exhaustion caused by stress or childhood trauma or abuse
23. MYTH: M.E. can be caused by the Epstein-Barr virus, Candida, adrenal exhaustion or glandular fever
24. MYTH: The term Myalgic Encephalopathy is more accurate than the term Myalgic Encephalomyelitis
25. MYTH: All those who state publicly that they believe M.E. to be a purely psychological or behavioural illness are basing their stance on a comprehensive examination of the medical evidence and actually believe what they are saying has a factual basis.

The truth is that every one of those statements is completely untrue despite how often they have been repeated to us and presented as 'facts'. See: The myths about Myalgic Encephalomyelitis for more information. (Reference)

So what do we know about Myalgic Encephalomyelitis so far?

Myalgic encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by post encephalitic damage to the brain stem; a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions – this is always damaged in M.E. (Hence the name Myalgic Encephalomyelitis.) The CNS is diffusely injured at several levels, these include the cortex, the limbic system, the basal ganglia, the hypothalamus and areas of the spinal cord and its appendages. This persisting multilevel central nervous system (CNS) dysfunction is undoubtedly both the chief cause of disability in M.E. and the most critical in the definition of the entire disease process.

M.E. is not stable from one hour, day, week or month to the next. It is the combination of the chronicity, the dysfunctions, and the instability, the lack of dependability of these functions, that creates the high level of disability in M.E. It is also worth noting that of the CNS dysfunctions, cognitive dysfunction is one of the most disabling characteristics of M.E. All of this is not simply theory, but is based upon an enormous body of mutually supportive clinical information spanning over 70 years and printed in reputable medical journals all over the world. (For more information see ‘What is M.E.? ) (Reference)

There is an abundance of research which shows that M.E. is an organic neurological illness which can have profound effects on many bodily systems. Autopsies have also confirmed such reports of bodily damage and infection. Many different organic abnormalities have been found in M.E. patients (in peer reviewed research). Patient advocates Margaret Williams and Eileen Marshall explain that:

• there is evidence of disrupted biology at cell membrane level
• there is evidence of abnormal brain metabolism
• there is evidence of widespread cerebral hypoperfusion
• there is evidence of central nervous system immune dysfunction
• there is evidence of central nervous system inflammation and demyelination
• there is evidence of hypomyelination
• there is evidence that Myalgic Encephalomyelitis is a complex, serious multi-system autoimmune disorder (in Belgium, the disorder has now been placed between multiple sclerosis and Lupus)
• there is evidence of significant neutrophil apoptosis
• there is evidence that the immune system is chronically activated (eg. the CD4:CD8 ratio may be grossly elevated)
• there is evidence that natural killer (NK) cell activity is impaired (ie. diminished)
• there is evidence that the vascular biology is abnormal, with disrupted endothelial function
• there is novel evidence of significantly elevated levels of isoprostanes
• there is evidence of cardiac insufficiency and that patients are in a form of cardiac failure (which is exacerbated by even trivial levels of physical activity, cognitive activity and orthostatic stress)
• there is evidence of autonomic dysfunction (especially thermodysregulation; frequency of micturition with nocturia; labile blood pressure; pooling of blood in the lower limbs; reduced blood volume (with orthostatic tachycardia and orthostatic hypotension. Findings of a circulating blood volume of only 75% of expected are common, and in some patients the level is only 50% of expected.)
• there is evidence of respiratory dysfunction, with reduced lung function in all parameters tested
• there is evidence of neuroendocrine dysfunction
• there is evidence of recovery rates for oxygen saturation that are 60% lower than those in normal controls
• there is evidence of delayed recovery of muscles after exercise. (Affecting all muscles including the heart, the eyes, and the brain.)
• there is evidence of a sensitive marker of muscle inflammation
• there is evidence that the size of the adrenal glands is reduced by 50%, with reduced cortisol levels
• there is evidence of at least 35 abnormal genes, (these are acquired genetic changes, not hereditary), specifically those that are important in metabolism; there are more abnormal genes in Myalgic Encephalomyelitis than there are in cancer
• there is evidence of serious cognitive impairment. (Worse than occurs in AIDS dementia)
• there is evidence of adverse reactions to medicinal drugs, especially those acting on the CNS
• there is evidence that symptoms fluctuate markedly from day to day and even from hour to hour (Note that this is only a sample of some of the research available, not an exhaustive list.) (Reference)

• For more information on all aspects of M.E. see ‘What is M.E.?.
• For more information on the financial and political issues surrounding the creation of ‘CFS’ see: Smoke and Mirrors and What is Myalgic Encephalomyelitis?
• For information on why the disease category of CFS must be abandoned see: Why the disease category of ‘CFS’ must be abandoned and Smoke and Mirrors
• M.E. is a distinct, recognisable entity (an acute onset organic neurological illness) that can be diagnosed relatively early in the course of the disease, providing the physician has some experience with the illness. The Nightingale Definition of M.E. (a testable M.E. definition) now also makes diagnosis easier than ever before even for those with no experience with the illness. M.E. is a distinct recognisable well-defined entity, with several unique features, which can very easily be distinguished from various chronic fatigue states, and other unrelated fatiguing illnesses (both psychological and non-psychological) which may qualify for a ‘CFS’ misdiagnosis. People with M.E. must be diagnosed with M.E. and treated for M.E., according to research which is based on M.E. patients (rather than ‘CFS’ patients).
• For information on how authentic M.E. is characterised and diagnosed see: Testing for Myalgic Encephalomyelitis, The Ultra-comprehensive Myalgic Encephalomyelitis Symptom List and What is Myalgic Encephalomyelitis? Also highly recommended are the excellent papers by Dr Byron Hyde, a doctor with over 20 years experience with M.E. and regarded by many as today’s leading M.E. expert: 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 and The Complexities of Diagnosis and his newest paper: The Nightingale Definition of M.E. Dr Hyde’s M.E. textbook is also highly recommended.
• For more information on the vast difference between M.E. and ‘CFS’ and the important difference between definitions and mere terminology, see: The Terminology Explained and What is Myalgic Encephalomyelitis? The terminology is often used interchangeably, incorrectly and confusingly. However, the DEFINITIONS of M.E. and CFS are very different and distinct, and it is the definitions of each of these terms which is of primary importance. The distinction must be made between terminology, and definitions.
• Some of the conditions commonly misdiagnosed as ‘CFS’ are very well defined and well-known illnesses and very treatable – but ONLY once they have been correctly diagnosed. Some conditions are also very serious or can even be fatal if not correctly diagnosed and managed, including Myalgic Encephalomyelitis. (It is not uncommon for people with cancer – which causes significant fatigue – to be misdiagnosed with CFS and to die needlessly due to a lack of appropriate treatment, for example.) Every patient deserves the best possible opportunity for appropriate treatment for their illness, and for recovery. This process must begin with a correct diagnosis if at all possible. A correct diagnosis is half the battle won. Every diagnosis of ‘CFS’ is a misdiagnosis. See: The misdiagnosis of CFS and Where to after a 'CFS' (mis)diagnosis? for more information.
• A note on so-called ‘subgroups’ of ‘ME/CFS’: ‘ME/CFS’ is just a diversion from the real issues instigated by vested interest groups, the same is true of ‘sub-grouping ME/CFS.’ It is a nonsense that makes a mockery of legitimate activism. The only relevant subgroups here are M.E., and not M.E. People with Fibromyalgia have FM, and should be diagnosed with FM. To say that FM is a subgroup of ‘CFS’ or ‘ME/CFS’ is ridiculous. The same is true of post viral fatigue syndromes caused by Glandular Fever/Mononucleosis, Hepatitis, Ross river virus, Q fever or EBV – and so on. See: The misdiagnosis of CFS and Problems with the use of 'ME/CFS' by M.E. advocates and Why the disease category of ‘CFS’ must be abandoned for more information.
• For more information on the lack of quality and integrity in almost all M.E. and ‘CFS’ advocacy groups and how and why most of them have sold patients out to the highest bidder, see: Problems with 'our' M.E. (or ‘CFS,’ ‘CFIDS’ or ‘ME/CFS’) advocacy groups. (This paper is also available in an animated video format.)
• See On the Name Myalgic Encephalomyelitis for more information on the evidence for inflammation of the brain and spinal cord in M.E. and other issues surrounding the name Myalgic Encephalomyelitis.