#me_cfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #me_cfs, aggregated by home.social.
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Rebonjour ☀
Maon amiæ cherche aussi urgemment un·e généraliste safe, qui croit en l'EM/sfc sans psychopathologiser. En région lilloise, et qui prend en visio.
Si vous avez des pistes, svp contactez-moi (mp)Sinon, un petit boost aide déjà beaucoup 🌿💛
#mutualaid #em #sfc #emsfc #EmSfc #ME_CFS #EncephalomyeliteMyalgique #syndromedefatiguechronique #CovidLong #medecin #generaliste #lille #roubaix #tourcoing -
Salut. Unæ amiæ cherche urgemment un·e psychiatre safe, qui croit en l'EM/sfc sans psychopathologiser. En région lilloise, et qui prend en visio.
Si vous avez des pistes, svp contactez-moi (mp)
Sinon, un petit boost aiderait déjà beaucoup 💛
#mutualaid #em #sfc
#emsfc #EmSfc #ME_CFS #EncephalomyeliteMyalgique #syndromedefatiguechronique #CovidLong #psychiatre #lille #roubaix #tourcoing -
🩺💊 Niedrigdosiertes Naltrexon könnte bei ME/CFS & Long COVID helfen, Symptome wie Schmerzen, Fatigue und „Brain-Fog“ zu lindern. Off-label: ärztlich abklären & informieren. https://www.pains.at/schmerzmedizin/naltrexon-bei-chronischem-fatigue-syndrom-und-long-covid/ 🧠😴 #LongCOVID #ME_CFS #Schmerzmedizin #Fatigue
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CW: asking for advice on living and doing some things I like despite bad, permanent burnout
#MeCfs #ME_CFS #Burnout #ActuallyAutistic #actuallyAuDHD #ActuallyADHD gals, maybe you know important techniques I don't. I have Audhd. I got burned out trying to study in places that didn't accomodate me for 3 years. Now, I'm going to study somewhere smaller, nearer, and I think I'll be able to handle it. I live with my parents, I am 19, I do not have me/CFS, but the rest is diagnosed. Parents know about it. But they still can't accept how bad I got with the recent burnout. I don't work, I don't do anything really. Still I have days I just cannot get out of bed at all.
How does one survive somewhat happy, even with extremely limited energy ? For me, spoons are the shortage. How do I preserve the spoons I still get ? I've been trying to make my parents understand but it's slow. Even vague answers help, I have no idea what to do.
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Die Grenzen der Autonomie - Wie Post-Covid und ME/CFS das Leben verändern https://www.deutschlandfunk.de/wie-postcovid-und-me-cfs-das-leben-veraendern-100.html #me_CFS #postCovid
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David Tuller's annual crowdfunding campaign to fund his work at the University of Berkely debunking bad science.
Ten years ago this month, David Tuller launched Trial By Error with a 15,000-word investigation of the fraudulent PACE trial for ME/CFS.
Since then, it's turned into a 10 year odyssey unpicking nonsense research as it's published.
Much more information about David's work and the funding link are here:
https://crowdfund.berkeley.edu/project/47768 -
#FYI #me #cfs #me_cfs #postcovid #longcovid #fatigue #fatiguesyndrome #medicine #science
Why you can't move in fatigue syndrome.
Microglia inflammation in the brain completely depletes the brain of serotonin, which is mandatory to even TRY to move.
(Immobility has a good reason, the underlying infections/eg. viruses like EBV, SARS-CoV2 can severely disturb energy transport on cellular level in the body, so never force activity, that would backfire badly!) -
#FYI #medicine #me #me_cfs #cfs #JarredYounger
Huge ME/CFS genetic study introduction.
Yes, that would pave the way to diagnoses supported by individual genetic testing. And also would help to understand and treat the wide range of symptoms in Long/Post Covid, which I suspect is rooting in similar genetic variants. The disorders in cellular vesical transport and mitocondrial disturbances are like "famous" already.
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The initial findings from the DecodeME genetic study:
"Our results show that people with an ME/CFS diagnosis have significant genetic differences compared to the general population. These findings confirm that genes contribute to someone’s chances of developing ME/CFS.
Eight genetic signals have been identified that are much more common in people with ME/CFS than the general population. The signals discovered are involved in the immune and the nervous systems, indicating immunological and neurological causes to this poorly understood disease." -
Liebes Fediverse,
normal poste ich ja thematisch was ganz anderes, aber es würde mich wahnsinnig freuen, wenn Ihr dabei helft, dass diese Petition weiter vorangeht.
Ich hoffe, hier wenigstens ein paar weitere Unterzeichner zu finden.
Danke!
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Skeletal muscle properties in #LongCOVID and #ME_CFS differ from those induced by bed rest
https://www.medrxiv.org/content/10.1101/2025.05.02.25326885v1
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L'encéphalomyélite myalgique, une maladie sournoise qui touche à 70% les femmes et qui continue, trop souvent, à être psychiatrisée
#emsfc #EncephalomyeliteMyalgique #ME_CFS -
2/ So if the old definition doesn't require post exertional malaise, I wonder how many would have CFS under the current diagnosis criteria. How much is depression causing significant ongoing fatigue in people in these studies?
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1/ Today's dissertation topic was chronic fatigue syndrome and childhood trauma.
Several studies have found an association between CFS and childhood trauma. One study found over half of people with CFS reported childhood trauma. However, a study that excluded people with a history of depression didn't find an association between CFS and childhood trauma.
Note that these studies mostly use the 1994 CDC definition of CFS which didn't require post exertional malaise for diagnosis. -
Appallingly harmful action here on the outdated #Cochrane review on exercise and ME/CFS
"Cochrane re-issued the review in December, dated it 2024 despite the last search for studies being over 10 years ago, ostensibly affirming its content as current"
We know that increasing exercise has been found to be harmful in ME/CFS.
This brings the Cochrane Foundation into disrepute.
https://hbprojecttalk.wordpress.com/2025/01/24/independent-advisory-group-open-letter-to-cochrane/
