Online, I found thousands of other people, all over the world, living with the same symptoms. Similarly isolated, similarly disbelieved.

Myalgic Encephalomyelitis (ME) is a systemic neuroimmune disease characterized by post-exertional malaise (a severe worsening of symptoms after minimal exertion). ME causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25 percent of patients housebound or bedbound and an estimated 75 percent unable to work. Many moderate to severe patients have a physical capacity equivalent to patients suffering from late-stage cancer or congestive heart failure. Both children and adults are affected.

ME is also sometimes called CFS (Chronic Fatigue Syndrome) or known by the acronym ME/CFS.

Researchers have estimated that 1 to 2.5 million Americans suffer with ME — more Americans even than those afflicted with Multiple Sclerosis. An estimated 250,000 British people, 150,000 Australians, and 400,000 Canadians have ME. Approximately 75-85 percent of them are women.

Due to stigma and a lack of government research and medical education around ME, many patients are left undiagnosed, misdiagnosed, or told their severe disabilities are imagined.

In the US, there is no diagnosis for ME, no FDA-approved treatments, and no training on ME in medical schools. Governments around the world have abandoned their people with ME by failing to fund biomedical research, social services, or public awareness at parity with similar conditions.   


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