Myalgic Encephalomyelitis listed in National Organization For Rare Disorders


Founder of Health Rising and Phoenix Rising
Staff member
Interesting. With Lenny Jason's help ME is recognized as a rare disorder by NORD

NORD gratefully acknowledges Leonard Jason, PhD, and his DePaul research team, for assistance in the preparation of this report.
Synonyms of Myalgic Encephalomyelitis

  • CFS/ME
  • chronic fatigue syndrome/myalgic encephalomyelitis
  • ME
NORD's Rare Disease Database provides brief introductions for patients and their families to more than 1,200 rare diseases. This is not a comprehensive database since there are nearly 7,000 diseases considered rare in the U.S. We add new topics as we are able to do so, with the help of rare disease medical experts.

According to the National Institutes of Health (NIH), a disease is considered rare if it has a prevalence of fewer than 200,000 affected individuals in the United States. There are roughly 7,000 rare diseases currently identified.

Myalgic encephalomyelitis (ME) is an acquired complex disorder characterized by a variety of symptoms and physical findings potentially affecting multiple systems of the body. Many cases are preceded by a viral infection, usually a flu-like or upper respiratory illness, although ME can also be preceded by a non-viral illness or other trauma such as chemical exposure. Onset is usually rapid (acute) but gradual onsets are also reported. Affected individuals do not recover from the infection and instead experience a wide variety of symptoms including an inability to produce sufficient energy to meet daily demands. Marked fatigue, sickness, and symptom flare-up follows physical and cognitive exertion. Additional symptoms that may occur include headaches, pain, muscle weakness, neck pain, vision abnormalities, a sensation of tingling, burning or numbness of the extremities (paresthesia), and sleep dysfunction. Cardiovascular abnormalities have also been reported. Myalgic encephalomyelitis is a chronic and disabling disorder. Severe cases can leave affected individuals bedridden or housebound. Myalgic encephalomyelitis may occur as an outbreak that affects a large group of people (epidemically) or may only affect an individual (non-epidemically).

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