ME (myalgic encephalomyelitis) is not chronic fatigue syndrome or SEID.

This table indicates the rate of symptoms of 420 UK patients who were classified as having myalgic encephalomyelitis. This is from ‘Myalgic encephalomyelitis–a persistent enteroviral infection?’, a report published in 1990, shortly after Dr. Ramsay’s death. It was the last thing he did.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2429637/

CFS and ME/CFS were introduced in 1988, after an outbreak of a fatiguing illness in the Lake Tahoe area. ME was already an established name for a particular disease. The new disease did not fit, so ME and the new disease were thrown together and conflated.

The Institute of Medicine has recently renamed ME/CFS to SEID, systemic exertion intolerance disease. The committee noted that ME/CFS did not feature myalgia (muscle pain), or symptoms of encephalomyelitis (inflammation of the brain and spinal cord).

Out of the 420 patients in the table, 383 had evidence of enteroviral infection. Only 3 had evidence of Epstein-Barr virus. ME is overwhelmingly an enteroviral disease.

Note that chronic fatigue is not even on the list. Muscle fatigue or weakness occurs in 100% of patients. Myalgia or muscle pain occurs in 80% of them. According to the IOM, all SEID patients have chronic fatigue, myalgia is not an important symptom, and muscle weakness is not mentioned.

Auditory phenomena occur in 69% of the patients. Tinnitus is very frequent, and deafness is mentioned. This is due to an infection of the central nervous system. Tinnitus is infrequent in SEID. Auditory phenomena occur at a rate three times that of orthostatic tachycardia in ME. POTS is much more infrequent than tinnitus.

Visual disturbances occur at a much higher rate than with SEID. Hyperaethesia, or sensory hypersensitivity, occurs at a very high rate.

It is clear that ME is an infection of the brain and spinal cord, which affects the muscles, and is an immune deficiency disease that allows the infection to persist. Enteroviruses spread by infecting neurons. High rates of neurotransmitter activity, primarily serotonin and glutamate, are brought on by the immune condition. The receptors that these neurotransmitters bind to are infected by the virus.

ME is a very serious disease. SEID was never ME, and the conflation of the two completely different diseases has brought harm to ME patients, and is continuing to do so.

The IOM’s renaming of ME/CFS to SEID is welcome for ME patients. And it is timely because there is currently an epidemic of enterovirus 68 that is infecting children in the US and Canada. Many of them may develop ME, not SEID.

I demand that all Facebook groups, ME associations, websites, blogs, and other entities that use the name ‘ME’ or ‘ME/CFS’ immediately change their names, unless they are devoted specifically and only to myalgic encephalomyelitis.

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