facts about myalgic encephalomyelitis (ME/CFS) to combat the disinformation campaigns going on:
what does the name mean? my = muscle. algic = pain. encephalo = brain. myel = spinal cord. itis = inflammation.
ME is classed by the WHO as a neurological disease. the Decode ME study found immune and neurological genetic markers in its analysis of 15,000 subjects.
ME is much more complex than fatigue. many experts and patients dislike the old name ‘chronic fatigue syndrome’ because fatigue is only one part of the condition, and it’s the least unique trait.
the most unique trait is post exertional malaise, where, 24-72 hours after any exertion outside the patient’s limits, there’s a peak of worsening and new symptoms affecting multiple bodily systems. PEM often involves immune activation, such as sore throat and a low fever, and a loss of muscle recovery after exertion, measurable through CPET testing. (normal muscle recovery takes 200 mins, but muscle recovery in ME takes days, with some patients taking longer than a year to recover from a single exertion.)
ME can range from mild to profoundly severe. these severity levels are only within the context of ME, not general illness; ‘mild’ ME is still a severe illness as it includes a 50% loss of functioning. ‘mild’ ME can feature debilitating pain and complex symptoms and can turn basic activities of daily living into a marathon.
severe ME is (naturally) even more physically limiting than mild ME. people with severe ME are largely bedbound and only rarely able to leave their room in a wheelchair, and usually can’t perform their own care tasks, needing help dressing, washing, and eating.
in very severe ME, the person may be unable to leave bed at all and may not be able to speak, swallow, roll over, sit up, read, or be exposed to light or noise, for years or decades.
ME has a measurably lower quality of life than any other illness studied, including cancer and stroke.
finally, many of us can attest that exertion can cause years of deterioration and loss of functioning in ME patients. ive been 95% bedbound for the last decade bc of ONE WEEKEND where i walked too much when i was 15. im 26 now. and ive known so many people who went through something similar. do with this info what you will.
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