New short overview piece with links "What is myalgic encephalomyelitis?" by @thesicktimes.bsky.social & @longcovidjustice.bsky.social ( @mileswgriffis.bsky.social , @betsyladyzhets.bsky.social & @sunsopeningband.bsky.social ) longcovidjustice.org/what-is-me/ #MyalgicEncephalomyelitis #PwME - ThreadSky

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tomkindlon.bsky.social • 51 days ago

New short overview piece with links

"What is myalgic encephalomyelitis?" by @thesicktimes.bsky.social & @longcovidjustice.bsky.social ( @mileswgriffis.bsky.social , @betsyladyzhets.bsky.social & @sunsopeningband.bsky.social )

https://longcovidjustice.org/what-is-me/

#MyalgicEncephalomyelitis #PwME

Comments

sabineg.bsky.social•50 days ago

📌

sunsopeningband.bsky.social•51 days ago

Thanks for sharing, Tom. 🙏🏻

valebodi.bsky.social•51 days ago

“Myalgic encephalomyelitis (ME)*, is an umbrella term for a debilitating, multi-systemic disease often triggered by an infection.” Todd can you explain to me in which sense is ME an umbrella term? Is the term ☂️ used to describe the plethora of symptoms due to the multi-orgsns/systemic issues?

valebodi.bsky.social•51 days ago

I’ve read the *, but I am afraid that stating that ME is an ☂️ term, can cause more confusion. I would have just explained that ME is the historical name and then the conflation w/ CFS which does not require PEM/PESE.

trinity888.bsky.social•51 days ago

That struck me as well, to say it’s an umbrella term can add to the perception that ME isn’t a thing in itself. I read something recently about the history of the name and how there isn’t any label that properly describes it. (When I was diagnosed it was yuppie flu :).

sunsopeningband.bsky.social•51 days ago

In this usage, “umbrella term” was intended as “preferred term” but also that it covers multiple precipitating factors. I’m afraid I don’t see how the use of this term implies that it’s not a thing.

trinity888.bsky.social•51 days ago

Hi Todd, I understand the intent, and the difficulties inherent in an ill-defined disease process, it just seem to suggest that its a label people give to something that could be something else. I could just be tapping into 35 years of medical gaslighting here though. Good work appreciated!

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