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

by Kenny L. DeMeirleir (Editor), Neil R. McGregor (Editor)

An important medical milestone for anyone connected with ME/CFS!
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols includes a clinical definition (clinical diagnostic criteria) for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The clinical case definition was developed by an expert medical consensus panel of treating physicians, teaching faculty and world leaders in the research of ME/CFS. An expert subcommittee of Health Canada established the Terms of Reference for the consensus panel. The definition more adequately reflects the complexity of symptoms of a given patient's pathogenesis and should establish ME/CFS as a distinct medical entity and help distinguish it from overlapping medical conditions in the absence of a definitive laboratory test.
"The clinical definition will enable clinicians to make an early diagnosis which may assist in lessening the impact of ME/CFS in some patients," said Dr. Bruce M. Carruthers, lead author of the definition. "It will reduce the expensive problem of patients being sent to many specialists before being diagnosed and will allow patients to receive appropriate treatments in a timely fashion."
The panel's clinical case definition determines that more of the prominent symptoms are compulsory and symptoms that share a common region of pathogenesis are grouped together for clarity. In addition to severe prolonged fatigue, the definition includes the hallmark symptoms of post-exertional malaise and/or fatigue, sleep dysfunction, pain, two or more of the given neurological/cognitive manifestations, and at least one of the given symptoms from two of the categories of autonomic, neuroendocrine, and immune manifestations. Diagnostic exclusions and common co-morbid entities are also given.
The special issue of the Journal of Chronic Fatigue Syndrome also includes a discussion of prominent symptoms, clinical practice diagnostic and treatment guidelines based on the best available research evidence, and an overview of available research on ME/CFS.
The expert panel of 11 physicians--who have diagnosed and/or treated more than 20,000 ME/CFS patients between them--has developed a clinical case definition that provides a flexible conceptual framework based on the characteristic patterns of symptom clusters, which reflect specific areas of pathogenesis. The expert subcommittee of Health Canada selected the expert consensus panel.
Authors include: Dr. Bruce M. Carruthers, lead author of the consensus document; co-author of the draft of the original version of the ME/CFS clinical definition, diagnostic and treatment protocols document; internal medicine, Galiano, British Columbia. Dr. Anil Kumar Jain, co-author of the draft the original version of the ME/CFS consensus document, affiliate of Ottawa Hospital, Ontario. Dr. Kenny L. De Meirleir, Professor Physiology and Medicine, Vrije Universiteit Brussel, Brussels, Belgium; ME/CFS researcher and clinician; organizer of the World Congress on Chronic Fatigue Syndrome and Related Disorders; a board member of the American Association for Chronic Fatigue Syndrome; and co-editor of Chronic Fatigue Syndrome: Critical Reviews and Clinical Advances (Haworth) Dr. Daniel L. Peterson, affiliate of the Sierra Internal Medicine Associates in Incline Village, Nevada; ME/CFS researcher and clinician; a board member of the American Association for Chronic Fatigue Syndrome; and member of the International Chronic Fatigue Syndrome Study Group Dr. Nancy G. Klimas, Clinical Professor of Medicine in Microbiology/Immunology/Allergy and Psychology, University of Miami School of Medicine; ME/CFS researcher and clinician; a board member of the American Association for Chronic Fatigue Syndrome; and member of the federal CFS Coordinating Committee Dr. A. Martin Lerner, staff physician at William Beaumont Hospital in Royal Oak, Michigan; Clinical professor and former chief of the Division of Infectious Diseases at Wayne State University's School of Medicine; and ME/CFS researcher and clinician Dr. Alison C. Bested, haematological pathologist; former head of the Division of Haematology and Immunology at the Toronto East General and Orthopaedic Hospital; affiliate of the Environmental Health Clinic and Sunnybrook & Women's College Health Sciences Centre, Toronto, Ontario; ME/CFS researcher and clinician Dr. Pierre Flor-Henry, Clinical Professor of Psychiatry, University of Alberta; Clinical Director of General Psychiatry and Director of the Clinical Diagnostic and Research Centre, both based at Alberta Hospital in Edmonton, Alberta, Canada; ME/CFS brain researcher Dr. Pradip Joshi, internal medicine, Clinical Associate Professor of Medicine at Memorial University of Newfoundland in St. John's, Canada Dr. A. C. Peter Powles, Professor Emeritus, Faculty of Health Science, McMasters University, Hamilton; Professor, Faculty of Medicine, University of ...

178 pages, Paperback

First published February 6, 2003

Reviews

[Jodi · Rating 1 out of 5]

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.

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 it busts, it offers support to another equally harmful myth or ten. 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.

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. See also all other texts by Dr Hyde and Dr Dowsett.

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.

Also note that most or all of this text can be read for free online.

The facts of M.E. and 'CFS' are:

M.E. patients were treated appropriately and correctly diagnosed until around 1988, when there was an increase in the number of M.E. patients and outbreaks in the US. Some medical insurance companies (and others) decided that they would prefer not to lose many millions of dollars on so many new claims and so they created a new vague fictional disease category called 'Chronic Fatigue Syndrome' to try to confuse the issue of M.E. and to hide M.E. in plain sight.

Under the cover of 'CFS' certain vested interest groups have assiduously attempted to obliterate recorded medical history of M.E.; even though the existing evidence has been published in prestigious peer-reviewed journals around the world and spans over 70 years.

M.E. is a distinct, scientifically verifiable and measurable, acute onset, organic neurological disease. 'CFS' in contrast, is not a distinct disease. 'CFS' doesn't exist. Every diagnosis of CFS - based on any of the CFS definitions - can only ever be a misdiagnosis. A watebasket diagnosis.

The fact that a person qualifies for a diagnosis of 'CFS' (a) does not mean that the patient has M.E., and (b) does not mean that the patient has any other distinct illness named CFS.' M.E. and 'CFS' are not the same.

Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.

Chronic Fatigue Syndrome is an artificial construct created in the US in 1988 for the benefit of various political and financial vested interest groups. It is a mere diagnosis of exclusion based on the presence of gradual or acute onset fatigue lasting 6 months. If tests show serious abnormalities, a person no longer qualifies for the diagnosis, as 'CFS' is 'medically unexplained.' A diagnosis of 'CFS' does not mean that a person has any distinct disease (including M.E.). According to the latest CDC estimates, 2.54% of the population qualify for a 'CFS' (mis)diagnosis.

The patient population diagnosed with 'CFS' is made up of people with a vast array of unrelated illnesses, or with no detectable illness. However, while 'CFS' is not a genuine diagnosis, those given this misdiagnosis are in many cases significantly or even severely ill and disabled. 'CFS' is made up of people with cancer, MS, Lyme disease, depression and hundreds of other unrelated conditions.

Sub-grouping different types of 'CFS,' refining the bogus 'CFS' definitions further or renaming 'CFS' with some variation on the term M.E. (such as 'ME/CFS') would achieve nothing and only create yet more confusion and help to continue and further entrench the mistreatment and abuse.

The problem is not that 'CFS' patients are being mistreated as psychiatric patients; some of those patients misdiagnosed with CFS actually do have psychological illnesses. There is no such distinct disease/s as 'CFS' - that is the entire issue.

Due to outrageous political influences on medicine and govermnent policy, the vast majority of M.E. patients will not be able to be correctly diagnosed with M.E. Most M.E. patients will unfortunately be misdiagnosed with 'CFS.' It is extremely important to note, however, that only a very tiny percentage of those told they have 'CFS' will be M.E. patients. The overwhelming majority of those misdiagnosed with 'CFS' do NOT have M.E. 'CFS' is NOT just another term for M.E.

The name Myalgic Encephalomyelitis must be fully restored (to the exclusion of all others) and the World Health Organization classification of M.E. (as a distinct neurological disease) must be accepted and adhered to in all official documentations and government policy. M.E. patients must again be diagnosed with M.E. and treated appropriately for M.E. based on actual M.E. research. For this to happen, there is a real need for patients (and others) to participate in genuine advocacy and activism.

The bogus disease category of 'CFS' must be abandoned. All those misdiagnosed with 'CFS' must immediately reject this harmful misdiagnosis and begin the search to find their correct diagnosis whether this be M.E., PVFS, depression, cancer, or any other disease. Correct diagnosis is vital in obtaining the correct treatment.

Jodi Bassett, The Hummingbirds' Foundation for M.E.