Today, #May12, is #mecfs awareness day. While #COVID19 can damage almost any organ (possibly even testes, pancreas etc), CFS/ME is likely among the most common sequelae. Why focus only on deaths if there might be 10x more of debilitating illness? #MillionsMissing
Dozens of enteroviral #mecfs epidemics have been described since the 1930s, usually associated with polio epidemics and many taking place in hospitals. US, UK, Iceland, S. Africa, NZ... CFS/ME used to be called e.g. atypical polio and epidemic neuromyasthenia.
Kids also get #mecfs. I lost my health in one day at 16, a friend of mine is sick since 7. He had to quit school, never got to have a normal childhood. His brother and mother have it, too. Thousands of families where a parent and multiple kids are all disabled with CFS/ME.
Among my first #mecfs symptoms were chronic fever that lasted for 18 years in a row and heart symptoms. The ECG readout suggested I had had a myocardial infarction, but the doctor said I had no need to worry. Later found out I had been diagnosed with myocarditis. "Fatigue."
Up to 30% of people with SARS developed apparent #mecfs. #COVID19 is milder, but 10% has been proposed. CFS/ME is already much more common than e.g. MS - and more debilitating. In a British study CFS/ME was the most common cause of long-term school absences in children.
Most adults with #mecfs are unable to work, 25% estimated to be housebound, some bedbound. Social distancing for years or decades. Many severely ill are unable to tolerate sensory input, so no light, touch, books or music. Often extreme pain. Some are tube-fed. Some die. #COVID19
This is why the main #mecfs campaign is called #MillionsMissing, because millions of people are missing from their lives and families. A recent draft resolution from the EU, calling for more research, noted that 2 million have ME in the EU, at a cost of 40 billion euros a year.
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