About Us
The M.E. Society of Edmonton is a charitable organization founded in 1991 with a vision to promote an understanding of the diseases Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Operated by a volunteer Board, the Society educates medical and legal professionals, advocates for better treatment and services for those with ME and/or CFS and supports patients, families and caregivers.
About ME
MYALGIC (muscle pain)
+ ENCEPHALO (relating to the brain)
+ MYEL (relating to the spinal cord)
+ ITIS (inflammation)
= MYALGIC ENCEPHALOMYELITIS (brain and spinal cord inflammation with muscle pain)
Pronunciation: Myalgic: my-AL-jik Encephalomyelitis: en-SEF-uh-lo-MY-uh-LY-tis
Myalgic Encephalomyelitis is a multi-system disease that adversely affects the heart, brain, neuroendocrine, immune, and circulatory systems.
The Canadian Clinical Case Definition describes ME as "Myalgic Encephalomyelitis is a severe systemic, acquired illness that can be debilitating. It manifests symptoms predominantly based on neurological, immunological and endocrinological dysfunction. While the pathogenesis is suggested to be multi-factorial, the hypothesis of initiation by a viral infection has been prominent. Before acquiring the illness most patients were healthy, leading full and active lifestyles. ME/CFS most frequently follows an acute prodromal (an early symptom, perhaps a trigger) infection, varying from upper respiratory infections, bronchitis or sinusitis, or gastroenteritis, or an acute flu-like illness. Other prodromal events that may stress the neuroimmunoendocrine regulatory system include immunization, anesthetics, and exposure to environmental pollutants, chemicals, and heavy metals. Physical trauma such as a motor vehicle accident, a fall, or surgery may also trigger ME/CFS."
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, found that about 900,000 Americans would meet the very stringent case definition for ME/CFS, (therefore possibly 90,000 Canadians) although only 10% would have been properly diagnosed.
To put this into perspective, using just the DePaul datas limited estimates, ME/CFS is:
- Almost twice as common as Multiple Sclerosis
- Five times more common than AIDS.
Some key facts about ME/CFS
- It is a real, often relapsing, debilitating illness, affecting up hundreds of thousands of people the world over.
- ME is recognised as a neurological illness by the World Health Organisation.
- Studies have shown that most sufferers are unable to work to full capacity, and that 25% are severely disabled with some house/bed-bound.
- Characteristic symptoms include muscle pain with physical and mental exhaustion following normal activities; quite different from what is normally experienced by healthy people.
- ME/CFS has a huge impact on the lives of families and caregivers, but little, if any, support is available to them.
- ME/CFS also affects children.
- The cause is still unknown, and no cure or effective treatment has yet been found.
About CFS
Chronic Fatigue Syndrome is the common name given to a debilitating medical disorder that is generally defined by a persistent fatigue that is unrelated to physical exertion, neither relieved by rest/sleep nor caused by any other medical conditions. In 1988 the Centers for Disease Control (CDC) reporting on a cluster of illnesses with a chief complaint of fatigue, attached the term CFS to ME. ME is the only disease that has a symptom attached to its name thus causing confusion for those affected by ME
Why do some people use the term ME/CFS?
During the 1990s, the term ‘chronic fatigue syndrome’ (CFS) came into vogue. Since there was no specific diagnostic test for ME, and post-exercise ‘fatigue’ was one of its prominent symptoms, people with ME began to be diagnosed with CFS. In recent years, however, there has been a growing recognition that the diagnosis CFS — based on a list of vague non-specific symptoms — is so broad that it encompasses a range of diverse patient groups. At present, efforts are being made to remedy diagnostic confusion; meanwhile the term ME/CFS is frequently used. Of course, none of this alters the fact that the illness affects hundreds of thousands of people internationally. Consensus Criteria (ICC) for ME/CFS on the disease name:
The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).
The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3).
