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(Note from the Ed) How You Can Help!
We would
encourage you to provide your local support group or any other ME charity
with information about the Canadian Guidelines in order that they may
investigate the possible adoption of the above Guidelines if they wish.
Special Feature
The Canadian Guidelines
More Information on the Canadian Guidelines: Extract
(If you would like to view the document in its entirety, please type the following link in your Internet address bar) http://www.mefmaction.net/documents/journal.pdf
The Canadian Expert Consensus Panel has published a medical milestone, the first clinical case definition for the disease known as myalgic encephalomyelitis/chronic fatigue syndrome. This is clearly a vast improvement over the CDC's 1994 Fukuda criteria, which led to misunderstanding in both research and treatment modalities by making ‘fatigue’ a compulsory symptom but by downplaying or making optional the disease's hallmark of post-exertional sickness and other cardinal ME/CFS symptoms.
Sharp Contrast
In sharp contrast to the Fukuda criteria, this new clinical case definition makes it compulsory that in order to be diagnosed with ME/CFS, a patient must become symptomatically ill after exercise and must also have neurological, neurocognitive, neuroendocrine, dysautonomic, and immune manifestations. In short, symptoms other than fatigue must be present for a patient to meet the criteria.case definition, which incorporates some of the current research on dysautonomia, cardiac, and immune problems, was published in the Journal of Chronic Fatigue Syndrome, Vol. 11 (1) 2003.
The complete 109-page article ‘Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols’, Journal of Chronic Fatigue Syndrome, Vol. 11 (1) 2003, pp. 7-116, from which the above excerpt was taken, is available from the above link. 1. Post-exertional Malaise And Fatigue: There is a loss of physical and mental stamina, rapid muscular and cognitive fatigability, post-exertional fatigue, malaise and/or pain, and a tendency for other symptoms to worsen pathologically slow recovery period (it takes more than 24 hours to recover). Symptoms exacerbated by stress of any kind. Patient must have a marked degree of new onset, unexplained, persistent, or recurrent physical and mental fatigue that substantially reduces activity level. [ME Society of America Editor’s note: The M.E. Society prefers to use “delayed recovery of muscle function,” weakness, and faintness rather than “fatigue.” Further, we disagree that the muscle dysfunction is “unexplained”] (see their M.E. Definitional Framework and researchers’ medical explanations at the same link at top of page).
2. Sleep Disorder: Unrefreshing sleep or poor sleep quality; rhythm disturbance.
3. Pain: Arthralgia and/or myalgia without clinical evidence of inflammatory responses of joint swelling or redness. Pain can be experienced in the muscles, joints, or neck and is sometimes migratory in nature. Often, there are significant headaches of new type, pattern, or severity.
4. Neurological/Cognitive Manifestations: Two or more of the following difficulties should be present: confusion, impairment of concentration and short-term memory consolidation, difficulty with information processing, categorizing, and word retrieval, intermittent dyslexia, perceptual/sensory disturbances, disorientation, and ataxia. There may be overload phenomena: informational, cognitive, and sensory overload (e.g. photophobia and hypersensitivity to noise) and/or emotional overload which may lead to relapses and/or anxiety.
5. At Least One Symptom Out Of Two Of The Following Categories: a) Autonomic Manifestations: Orthostatic Intolerance e.g. neurally mediated hypotension (NMH), postural orthostatic tachycardia syndrome (POTS), delayed postural hypotension, vertigo, light-headedness, extreme pallor, intestinal or bladder disturbances with or without irritable bowel syndrome (IBS) or bladder dysfunction, palpitations with or without cardiac arrhythmia, vasomotor instability, and respiratory irregularities. (ME Society of America’s Editor notes: low plasma and/or erythrocyte volume should be added as another explanation for orthostatic intolerance in this disease. They also hold that more cardiac symptoms should be listed such as left-side chest aches and resting tachycardias, which, in addition to low blood volume, have also been documented in the research. The full text of the case definition does suggest 24-hour Holter monitoring, and when tachycardias with T-wave inversions or flattenings are present that they not be labeled as nonspecific since they aid in the diagnosis of ME/CFS. See the link on at top of previous page to access the diagnostic part of the document.)
b) Neuroendocrine Manifestations: Loss of thermostatic stability, heat/cold intolerance, anorexia or abnormal appetite, marked weight change, hypoglycemia, loss of adaptability and tolerance for stress, worsening of symptoms with stress and slow recovery, and emotional lability.
c) Immune Manifestations: Tender lymph nodes, sore throat, flu-like symptoms, general malaise, development of new allergies or changes in status of old ones, and hypersensitivity to medications and/or chemicals.
6. The illness persists for at least 6 months. It usually has an acute onset, but onset also may be gradual. Preliminary diagnosis may be possible earlier. The disturbances generally form symptom clusters that are often unique to a particular patient. The manifestations may fluctuate and change over time. Symptoms exacerbate with exertion or stress.
Summary
This summary is paraphrased from Dr. Kenny van DeMeirleir's book ‘Chronic Fatigue Syndrome: A Biological Approach’, February 2002, CRC Press, pg. 275.A few edits and suggestions were added by the M.E. Society of America. As they have noted, the M.E. Society of America holds that this is the best case definition so far, although it is not perfect. Listing more cardiac and neurological symptoms (e.g., chest pain, left-side chest aches, tachycardia, and neuropathy pain), and emphasizing muscle weakness and faintness instead of “fatigue,” would have more accurately represented the symptomatology and vastly improved the criteria (please see the M.E. Definitional Framework at link at top of previous page). Nevertheless, the Canadian Consensus Panel clinical case definition more accurately represents the experience and manifestations of the disease than other current case definitions. Again, for the 30-page diagnostic ME/CFS case definition, visit the above link.
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Panel: For information on this, please send an SAE + 2nd Class Stamps to the Group Office. If you do not have access to the Internet and wish the full version of the Canadian Guidelines (approx 109 pgs), please send a cheque for £3.00 to the group office made payable to’ 25% ME Group’.
This definition was hosted and coordinated by the National ME/FM Action Network of Canada, led by Lydia Nielson. The M.E. Society would like to thank the Canadian group for the many years of work that went into this important project.
© Copyright 2003 M.E. Society of America
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Copyright © 2004 The contents of these webpages are copyright. Last updated 17 May 2006 |