Not the news I’d hope to share but—NIH’s massive Long Covid study has a new paper finding 1 in 22 participants who had Covid developed the neuro disease I have, ME/CFS.
80% of people w/ME are too sick to hold a full-time job—gov abandoning us to face this risk on a daily basis is unconscionable.
80% of people w/ME are too sick to hold a full-time job—gov abandoning us to face this risk on a daily basis is unconscionable.
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But the average health-related quality of life for ME/CFS is worse than stroke—or literally any other condition it’s ever been compared to.
Great doc about it called UNREST streams free on YouTube. Premiered at Sundance, was Oscar-shortlisted.
@dialoguesmecfs.bsky.social
https://m.youtube.com/watch?v=Jz5lSdLUurY
PS: @jenbrea.bsky.social is on Bluesky and her bio says “ I am a filmmaker. I *used to have* #mecfs and #longcovid.”
Many don’t know how debilitating ME/CFS is precisely bc it’s so much so that people affected drop out of view. Those who can still work have to give up all else to manage it; half are out of workforce entirely; and a quarter are home or bedbound.
UNREST is a glimpse at what the disease hides.
(I asked my doc and of course they've already looked at it and it doesn't work long term blah blah.)
(Admittedly this is an LC study; very interesting it also helped your pre-2020 ME.)
Main thing to look for is getting worse after exercise or other activity (can be cognitive too). This is called “post-exertional malaise” (PEM) and it’s what distinguishes the disease ME/CFS from other forms of chronic fatigue.
Yes when you consider how many people have had and are still getting Covid, this is a very, very daunting prospect.