Long covid has wrecked my life
It’s bad, very bad. But you knew that already
I want to tell you a hopeful story. A story about the things that can be done here and now to mitigate this terrible illness
Isn't it amazing how #mecfs is maybe (probably?) an infection or multiple infections? Absolutely mind-boggling how "modern medicine" could have missed that for 100+ years, if it turns out to be true. Occam's razor at its best?
#LongCovid patients just single-handedly funded the first prospective research diagnostic for the greatest mass disabling event in human history, while our governments, universities, & hospitals sat idly by with billions of dollars behind them. They couldn’t be bothered.
#LongCovid (those with PEM) patients groups' biggest mistake from the very beginning was to put as much distance between them and #mecfs as possible! It gave the NIH and other agencies more space to waste money and time. I still hope they change strategy.
"Sajid Javid’s radical new approach to the debilitating condition myalgic encephalomyelitis was shaped by his experience with a family member."
https://t.co/RcOMLPTnhS
I would really like to know the thoughts of Wessely, Chalder, White, Sharpe, Crawley et all on the false sickness beliefs that led to these platelet and coagulation abnormalities. #MECFS#pwME#MyalgicEncephalomyelitis#TeamClots. (Note- not all #ME pts will have these features).
I've been referred to my local long covid/M.E fatigue clinic this is the full questionnaire I've been sent to diagnose how bad my illness is, doesn't even touch the sides of symptoms looks like a child's wrote it. Anyone has similar? #COVID19#LongCovid
Classic bit of NZ/Scottish accent confusion after a meal in the Water Bar in Wānaka just now.
Me: ‘Can I settle up?’
Barman: ‘Sorry, what’s that?’
Me: ‘I want to pay.’
Barman: ‘Ah, right, the toilets are behind you.’
Me: …