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me-cfs.bsky.social

Disabled by very Severe Post-COVID ME/CFS. Not always able to use phone. Bedridden. Unable to Speak. I care. My ME/CFS News Aggregator: @me-cfs.mastodon.social.ap.brid.gy Ⓐ💚, (FR/DE/EN, but posts in english) Clinging onto the ledge above the abyss.

1,129 posts 1,503 followers 1,070 following

Posts 14 Comments 36

"Christian Elliott, cellist, was born on April 24, 1984. He took his own life on April 9, 2025, aged 40, after suffering from ME" #myalgicencephalomyelitis #cfsme #myalgice #mecfs www.thetimes.com/uk/obituarie...

submitted 8 hours ago • 1 comment

I want to do so much, but can only do so little...

submitted 10 hours ago • 1 comment

CN Tod Jana ( @inaktiv.bsky.social ) war ein sehr herzlicher und aufmerksamer Mensch. Ihre klugen Analysen und ihr enormes Wissen über ME/CFS werden fehlen 🖤

submitted 4 days ago • 45 comments

Swiss news keeps talking about a “concerning” rise in disability insurance claims among young people. Funny how they’re concerned about the number of claims — not the rise in disability itself. That framing is what’s truly concerning. (Little hint on causes: cough long COVID cough)

submitted 6 days ago • 2 comments

#LongCovid, #MECFS and #PAIS are medical and ethical emergencies. Though many people fail to recognise this as such. On the ethical issues, our website with the video recordings of the talks held at the #postviralethics conference is now online!! 👇 www.ru.nl/en/about-us/...

submitted 9 days ago • 6 comments

There’s a deeply unfair cruelty in ME/CFS, in that the more severe you are, the less you can control the amount of PEM you get. Which means you have less power to stop further worsenings. The further down you fall in the hole, the more you struggle to find ledges to hold onto.

submitted 7 days ago • 3 comments

This #MillionsMissing we want to flood funding organisations with SOS messages - send yours by post to the government, DHSC, MRC &NIHR using info 👇 ow.ly/ewnZ50VCe0F #MillionsMissing #DisabilitySOS #pwME #MECFS #LongCovid #MyalgicEncephalomyelitis #ChronicIllness

submitted 8 days ago • 0 comments

If “cognitive dissonance” is a term, can we use “cognitive chasm” to refer to the distance between our thoughts and our ability to act on those thoughts? I can dream of the entire world but I can only touch the very edge of those thoughts. A chasm between thought and action. A cognitive chasm.

submitted 9 days ago • 1 comment

I think if you’re designing a study to “prove” a treatment works, you’re already going about it wrong. The aim should always be to “test if” not to “prove that”. If you’ve got the latter as the aim, you probably have a conflict of interest. (Cough PACE Trial Cough)

submitted 9 days ago • 2 comments

The years where I had undiagnosed mild ME/CFS were overall a dark lonely time for me. There were absolutely some good times, and good memories, but I never in a million years thought I would look back on them with the desperate nostalgia I do now that my ME/CFS is severe.

submitted 10 days ago • 1 comment

🤔Where does this widespread disbelief of disease come from? Melanie Sloan shows that one reason for this is the assumption in medicine that complex illness with "many symptoms" is a 🚩 Rooted in neurology & psychiatry literature by Sharpe, Stone & Carson.

submitted 10 days ago • 6 comments

Long COVID is real. It’s common. It’s disabling millions. And no one talks about it—because if we looked too closely, we’d have to change So instead, we decided: Let people get sick. Let kids struggle. Let the vulnerable disappear. Let the numbers stop counting.

submitted 11 days ago • 37 comments

When we explain PEM to doctors, carers etc. they usually get that active exertion (running, walking, showering, reading etc.) can lead to PEM. But often don’t understand passive exertion (being in a chair, noises, someone talking to you, hot temperatures etc.) can lead to PEM.

submitted 11 days ago • 3 comments

ME/CFS research receives far less funding than other chronic illnesses. Tag your election candidates and ask them about their commitments to help people with #MECFS and #longCOVID. Remind them you're asking for a #FairGoForME and this will decide your vote! #AusVotes2025

submitted 11 days ago • 2 comments