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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 M.E.
A Statistics Canada survey in which respondents were asked whether their doctor had diagnosed them with chronic fatigue or its more recently introduced name, myalgic encephalomyelitis (ME). The survey shows 560,000 Canadians report that they have the disease - a 36.7 percent increase over previous results from 2014. The number also suggests the disease may be more common than breast cancer, Parkinson's disease and multiple sclerosis combined.
MY (muscle)
+ ALGIC (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 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 multifactorial, 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."
Some key facts about ME/CFS
+ ALGIC (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 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 multifactorial, 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."
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 International Consensus Primer (Carruthers & van de Sande 2012) states "The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters skepticism, and wastes limited research monies."
The International Consensus Primer (Carruthers & van de Sande 2012) states "The label ‘chronic fatigue syndrome’ (CFS), coined in the 1980s, has persisted due to lack of knowledge of its etiologic agents and pathophysiology. Misperceptions have arisen because the name ‘CFS’ and its hybrids ME/CFS, CFS/ME and CFS/CF have been used for widely diverse conditions. Patient sets can include those who are seriously ill with ME, many bedridden and unable to care for themselves, to those who have general fatigue or, under the Reeves criteria, patients are not required to have any physical symptoms. There is a poignant need to untangle the web of confusion caused by mixing diverse and often overly inclusive patient populations in one heterogeneous, multi-rubric pot called ‘chronic fatigue syndrome’. We believe this is the foremost cause of diluted and inconsistent research findings, which hinders progress, fosters skepticism, and wastes limited research monies."
