The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols - Review by HFME

These guidelines are problematic. In a nutshell, this is yet another redefinition of ‘CFS’ that has had a small number of facts about neurological M.E. tacked onto it. Yes, it selects a more severely ill and less-likely-to-be-mentally-ill patient group than other ‘CFS’ definitions, but just like these other ‘CFS’ definitions, neither can it be said to select a 100% homogenous patient groups consisting solely of M.E. patients (or even any other distinct patient group). As with all other ‘CFS’ definitions, it selects a mixed or heterogeneous patient group – and of course studies involving heterogeneous patient groups define nothing and help nobody; especially not any of the various patient groups involved.

The problem with this definition is that it focuses on mere fatigue instead of the genuine symptomatology and pathology that separates M.E. so distinctly from many other illnesses which may merely share a few symptoms. It is entirely possible that patients with non-M.E. illnesses such as Lyme disease, Fibromyalgia, MCS and many others may again be subsumed under this vague and mostly fatigue or ‘post exertional malaise’ based definition. Many illnesses present with fatigue, and what might be described as ‘post exertional malaise’ and do worse with exercise. But in no way do these patients suffer the same symptomatology, pathology and disability as genuine M.E. patients, and they are NOT genuine M.E. patients. (For more information see: What is Myalgic Encephalomyelitis?)

So not only does this definition fail to select a 100% M.E. patient population, or anything like it, it is also entirely possible that research could be conducted using this definition which contains NO M.E. patients at all, which makes this definition a dangerous tool just waiting to be used against the best interests of patients and science by vested interest groups. It should not and can not be considered a definition of M.E. It is at best, an unscientific blend of M.E. and ‘CFS’ unfortunately.

The treatment section is very weak, so much so as to be useless and even dangerous, as is the section describing the symptoms which supposedly define ‘ME/CFS’ – which are very different form those that define genuine M.E. The case definition also misrepresents the connection between “ME/CFS” and Fibromyalgia: which is nowhere as marked as stated. However, the research section is useful to some degree as is the three page section on how inappropriate CBT and GET are for M.E. patients, and the section which describes some of the tests which can be used to confirm the presence of the illness.

This paper has also given many Fibromyalgia, Lyme and other patient groups (and so on) the mistaken idea that they have M.E. when they do not, and the mistaken idea that these illnesses are the same as M.E. or can correctly be referred to as supposed ‘subgroups’ of M.E., which is also incorrect. In other words, it confuses the issue of correct diagnosis for many patients, in the same way as each of the other ‘CFS’ definitions. This is unacceptable. Patients deserve their best possible change for recovery and this must always start with a correct diagnosis if at all possible. A ‘CFS’ or ‘ME/CFS’ misdiagnosis helps nobody except the financial vested interest groups involved.

Again, along with some excellent features in these guidelines there are also many very problematic weak points. Along with every definition of the illness written since 1988 when the ‘fatigue’ and ‘CFS’ myth was created to obfuscate the true nature of the illness for political and financial gain these guidelines also unfortunately still use the medically inaccurate terminology of ‘fatigue’ for example. Worse, this ‘fatigue’ is repeatedly describes as being medically ‘unexplained’ – which of course does not relate to M.E. which isn’t now and never was medically unexplained. M.E. is of course defined by acute onset and measurable CNS damage, not fatigue or malaise. This definition confuses the issue further, by both stating that ‘ME/CFS’ is medically unexplained, and by also showing pages and pages of evidence which very clearly and compellingly do explain the basis of M.E. medically! The definition also unfortunately uses the confusing and misleading term ‘ME/CFS’ which gives the false and harmful impression that M.E. and ‘CFS’ are the same, etc. This is hardly helpful when the number one goal of advocacy is to make people aware of the fact that M.E.is NOT ‘CFS.’

Readers of this text should be aware that no part of this paper is not tainted by ‘CFS’ propaganda in some way. For every myth about ‘CFS’ or M.E. it busts, it offers support to another equally harmful myth. It also seems likely that the small amount of legitimate M.E. information in this paper will only give all the poor quality and misleading ‘CFS’ information more weight and so confuse the issue further for most readers, which is very worrying. If you are new to this topic, it is recommended that you read the papers of Dr Hyde first, to first get a clear understanding of the basic scientific facts about M.E. before dealing with such a problematic ‘ME/CFS’ paper as this one.

Read some more comments and critiques of the Guidelines online at:

See also the new pure (and by far superior) M.E. definition by Dr Hyde M.D. The Nightingale Definition of M.E. This is NOT a redefinition of ‘CFS’ as are the Canadian Guidelines, but is a genuine testable M.E. definition.

These texts are each essential reading for anyone with an interest in M.E.

For more information on this topic see: The Definitions of M.E.

For more on the various texts (and tests) which may be useful in diagnosing M.E. see: Testing for M.E.

See Smoke and Mirrors for a discussion of why the disease category of 'CFS' must be abandoned.


Availability of the Guidelines

Quotes from the guidelines

ME/CFS has developed following a blood transfusion. Within days or weeks of the initiating event, patients show a progressive decline in health and develop a cascade of symptoms.

Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS

 

In a group of 752 patients, 4.5% had a blood transfusion a few days to a week prior to developing acute onset ME/CFS.

Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS p79

 

Patients who suffered an acute onset showed significantly more dysregulation of the immune system than those patients whose onset was gradual.

Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS p77

 

ME/CFS occurs in both epidemic and sporadic forms.

Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS

 

Comments from the Canadian Guidelines on Cognitive Behavior Therapy (CBT) and Graded Exercise Therapy (GET) This excerpt is taken from pages 46-49 of the article "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" which appeared in the Journal of Chronic Fatigue Syndrome, Vol. 11(1) 2003, pp. 7-115, by Carruthers et al

An excerpt:

Two hypotheses have been presented as underlying the CBT model of chronic fatigue syndrome (105). The first hypothesis "assumes that the pathophysiology of CFS is largely irreversible, but considers that a fine-tuning of the patient's understanding and coping behavior may achieve some improvement in his or her quality of life." The second hypothesis is based on the premise that the patient's impairments are learned due to wrong thinking, and "considers the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behavior, and emotional processes. According to this model, CBT should not only improve the quality of the patient's life, but could be potentially curative" (105).

There is much that is objectionable in the very value-laden second hypothesis, with its implied primary causal role of cognitive, behavioral and emotional processes in the genesis of ME/CFS. This hypothesis is far from being confirmed, either on the basis of research findings or from its empirical results.

Nevertheless, the assumption of its truth by some has been used to influence attitudes and decisions within the medical community and the general cultural and social milieu of ME/CFS. To ignore the demonstrated biological pathology of this illness, to disregard the patient's autonomy and experience and tell them to ignore their symptoms, all too often leads to blaming patients for their illness and withholding medical support and treatment.

Care must be taken not to classify patients experiencing chronic fatigue as ME/CFS patients unless they meet all the criteria for ME/CFS, as the outcomes for these two patient groups are substantially different.

A well informed physician empowers the patient by respecting their experiences, counsels the patients in coping strategies, and helps them achieve optimal exercise and activity levels within their limits in a common sense, non-ideological manner, which is not tied to deadlines or other hidden agenda.

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