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Chronic Fatigue Syndrome Guidelines
Peer-reviewed and published, an international panel of experts, led by Canada, set a 2003 Concensus on Diagnosis and Treatment, spear-headed in Canada by the ME/FM Action Network.
Myalgic Encephalomyelitis is characterized as follows:
MYALGIC - muscle pain
ENCEPHALO - brain
MYEL - spinal cord
ITIS - inflammation
Myalgic Encephalomyelitis (M.E.) Definition, courtesy of the Nightingale Research Foundation
Definitions and aetiology of Myalgic Encephalomyelitis (ME)
By Dr. Bruce Carruthers
To improve clinical observation, the Canadian definition and diagnostic protocol lays out a number
of regions of patho-physiological dysfunction, as necessary components of the syndrome of ME,
but the particular expression of symptoms within each region is contingent between individuals,
and their specific pattern is left open to be decided by clinical observation of the individual and
later diagnostic classification. These component regions include fatigue, which must be severe
and prolonged and of a certain dynamic pattern (delayed, prolonged reactive), and significant
dysfunction must be observed in the following realms - sleep, pain, neurological/cognitive, and at
least one of the following 3 realms - autonomic nervous system, neuroendocrine, and immune
system. This approach facilitates the identification of the patient's individual clinical entity or
syndrome, how its parts fit together and interact, as well as its impact on the patient s life - seen as
dis-ability and dis-ease - and leading to a more accurate and adequate diagnosis. It allows
estimates of the clinical course and prognosis, decisions regarding treatment, estimation of the
treatment effects, and search for successful preventive and rehabilitative strategies. With its
flexible combination of necessary and optional features, the definition allows the diagnosis to fit the
patient rather than the other way around (as with Procrustes, an innkeeper from Greek mythology
who stretched the guests to fit his bed!).
Prevalence:
There has never been a randomized CFS prevalence study in Canada. The 2006 US data suggests 4 million Americans have CFS, which carried to Canada suggests 400,000 Canadians have CFS. The old data from the DePaul study simply didn't include the whole patient population. The rigor of the new study suggests the new estimate is more reliable.
The data below is the old standard, and suggested at least one million American CFS patients, or .
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1999 DePaul University Prevalence Study (Chicago): Leonard Jason, PhD, building on data from the Centers for Disease Control and Prevention (CDC) and other research institutions, this DePaul group found that about 900,000 Americans would meet the very stringent case definition for CFS, (therefore possibly 90,000 Canadians) although only 10% would have been properly diagnosed. Jason Leonard was engaged in the follow-up study with the original Chicago co-hort, providing an opportunity to follow the course of the illness over time. Jason Leonard is considered one of the top CFS researchers in the world, measured in terms of funding and peer-reviewed publications.
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To put this into perspective, using just the DePaul data's limited estimates, CFS/ME is:
Almost twice as common as Multiple Sclerosis
Five times more common than AIDS.
Symptom Overview:
CFS is a serious and complex illness that affects many body systems. The cardinal characteristic of CFS is a debilitating pathological exhaustion not reversed by rest, no matter how much one has. This situation results in a substantial reduction of previous levels of activity. In order to be clinically diagnosed with CFS, an individual must meet both of the following criteria:
- clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset, is not the result of ongoing exertion, is not substantially alleviated by rest and results in substantial reduction of previous levels of occupational, educational, social or personal activities; and
- four or more of the following key symptoms are concurrently present for 6 months or longer:
- substantial impairment in short-term memory or concentration (attention deficit, memory lapses, frequently using the wrong word, spatial disorientation);
- sore throat;
- extreme joint and muscle pain without swelling or redness;
- headaches of a new type, pattern or severity;
- unrefreshing sleep (hypersomnia or insomnia, nightmares);
- painful lymph nodes;
- post-exertional malaise lasting more than 24 hours.
Profound exhaustion, the hallmark of the disorder, can come on suddenly or gradually and persists or recurs throughout the period of illness. Unlike the short-term disability of an acute infection, CFS symptoms by definition linger for at least 6 months and often for years.
CFS often begins abruptly, but sometimes the onset is gradual. In about one-third of cases, the sudden onset follows a respiratory, gastrointestinal, or other acute infection with flu-like symptoms. Other cases develop after emotional or physical traumas such as bereavement or surgery.
M.E./CFS is recognized by the World Health Organization and the U.S. Centers for Disease Control and Prevention. The symptoms have been well documented and there is scientific evidence of immunologic, neurologic, and metabolic dysregulation.
Research Advances in the USA
Today, there is a new national awareness of chronic fatigue syndrome.
Every month, the Center for Disease Control in Atlanta receives more
than two-thousand calls inquiring about CFS. People at the Center are
now believers and they are seeing and charting the path of a growing
epidemic. It is now estimated that possibly four million Americans have some
form of this disorder. Based on the de Paul study's smaller population of 1 million Americans, an astounding cost of one hundred billion dollars in
local productivity each year is estimated to result from the impact of this pervasive syndrome.
The CFIDS association in the USA is the leading US group, and works closely with the CDC to advance research and education.
http://www.cfids.org/
Dr. David Bell, formerly on the FM-CFS Canada Medical Advisory Committee, produces a free online newsletter for CFS patients. Dr. Bell is considered one of the world's leading CFS experts, with a special emphasis on children.
http://www.davidsbell.com/
Visit our ME/CFS Research update page, click here.
DISCLAIMER:
The FM-CFS Canada Compassion in Action website contains general information only.
A qualified healthcare professional should be consulted before making medical
decisions. FM-CFS Canada makes every effort to ensure the accuracy and reliability of
the information that appears on its website but cannot guarantee that it is error
free or complete. FM-CFS Canada does not endorse any product, treatment or therapy;
neither does it evaluate the quality of services operated by other organizations.
Links to Other Sites
The FM-CFS Canada website has links to other websites that are not under its control;
FM-CFS Canada is not responsible for the contents of any linked website, or any link
contained in a linked website, or any changes or updates to such websites. The
inclusion of any link does not imply endorsement by FM-CFS Canada of that website.
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