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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 definition is
clearly a vast improvement over the CDC's 1994 case definition for CFS, 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. In sharp contrast to the CDC's 1994 definition, 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,
circulatory, and
immune manifestations. In short, symptoms other than fatigue must be
present for a patient to meet the criteria. The complete 109-page article "Myalgic Encephalomyelitis/Chronic Fatigue
Syndrome: Clinical Working Case Definition, Diagnostic and Treatment
Protocols," was published in the Journal of Chronic Fatigue
Syndrome, Vol. 11 (1) 2003, pp. 7-116.
To access this
document, which includes the diagnostic and research-overview parts of the ME/CFS case definition in PDF format, click here.
PDF files require the use of an Adobe Acrobat Reader. If you do not
already have one, it is available as a free download here.
For an HTML excerpt containing criticisms
of Cognitive
Behavior Therapy (CBT) and Graded Exercise Therapy (GET), click
here.
The following case
definitions are available in PDF format on this site:
Myalgic Encephalomyelitis (M.E.)
Definition by the Nightingale Research Foundation, Ottawa, Ontario, Canada
ME/CFS: 2003 Canadian
Clinical Case Definition
ME/CFS:
A Clinical Case
Definition [abridged version of the 2003 Canadian Clinical Case
Definition]
ME/CFS Guidelines [2004
clinical guidelines from Australia]
"ME/CFS Diagnosis: Delay Harms Health. Early diagnosis:
Why is it
so important? A Report from the M.E. Alliance [UK]"
Eleanor Stein, MD, FRCP(C), "Assessment and Treatment of Patients
with ME/CFS: Clinical Guidelines for Psychiatrists"
Leonard A. Jason, Ph.D., David S. Bell, M.D., FAAP, Kenny De Meirleir, M.D., Ph.D., et al., "A Pediatric Case Definition for Myalgic Encephalomelitis and Chronic Fatigue Syndrome,"
Journal of Chronic Fatigue Syndrome, Vol. 13, Issue 2/3, (2006), pp. 1-44.
[PDF Format]
Jason LA, Porter N, Shelleby E, Bell DS, Lapp CW, Rowe K, De Meirleir K, "A Case Definition for Children with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome,"
Clinical Medicine: Pediatrics 2008:1 53-57 [PDF Format]
The Canadian Clinical Case Definition is summarized as follows:
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. A 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. [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 and post-exertional sickness is “unexplained.” See our
Cardiac Insufficiency
Hypothesis page and our
Research-Based Subsets page for researchers’ medical explanations on this website.]
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. [Editor’s note: neuropathic pain is a common symptom and should be
added here as well.]
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:
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.
[Editor’s note: low plasma and/or erythrocyte volume should be added as
another explanation for orthostatic intolerance in this disease. 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. The frequent
tachycardias seen in ME/CFS have been shown by Dr. Paul Cheney to be a
compensatory mechanism that serves to increase cardiac output in the
presence of low stroke volume due to diastolic dysfunction in the heart. Orthostatic
problems may also be related to diastolic dysfunction as recently shown by
Dr.
Paul
Cheney. See our
Cardiac Insufficiency
Hypothesis page.]
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.
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.
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 we 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.
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 click
here.
Myalgic
Encephalomyelitis / Chronic Fatigue Syndrome Panel
1.
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.
2.
Dr. Anil Kumar Jain co-author of the draft the original version of the
ME/CFS consensus document, affiliate of Ottawa Hospital, Ontario.
3.
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)
4.
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
5.
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
6.
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
7.
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
Sunnybrrok & Women’s College Health Sciences Centre, Toronto, Ontario;
ME/CFS researcher and clinician
8.
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
9.
Dr. Pradip Joshi, internal medicine,
Clinical Associate Professor of Medicine at Memorial University of
Newfoundland in St. John’s, Canada
10.
Dr. A. C. Peter Powles, Professor Emeritus, Faculty of Health Science,
McMasters University, Hamilton; Professor, Faculty of Medicine, University
of Toronto; Chief of Medicine and Sleep Disorders Consultant, St. Joseph’s
Health Centre, Toronto; Sleep Disorder Consultant at the Sleep Disorder
Clinic at St. Joseph’s Healthcare, Hamilton, and Central West Sleep
Affiliation, Paris, Ontario
11.
Dr. Jeffrey A. Sherkey, family medicine, affiliate of the University
Health Network, Toronto, Ontario; and diagnosed with chronic fatigue
syndrome nearly 10 years ago
12.
Marjorie I. van de Sande, Consensus Coordinator; and Director of Education
for the National ME/FM Action Network, Canada
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.
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