#me-cfs — Public Fediverse posts
Live and recent posts from across the Fediverse tagged #me-cfs, aggregated by home.social.
-
Myalgic encephalomyelitis/chronic fatigue syndrome and overlapping post-acute infection syndromes: international expert consensus framework for diagnostic standardization
https://link.springer.com/article/10.1186/s12916-026-05161-8
Screenshot from latest Science for ME weekly update
-
2/
My initial thoughts for what they are worth on a video on ME/CFS which has over 170,000 views in the first 6 days!https://www.youtube.com/watch?v=GILP6q7zUGY
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs
-
A YouTuber, Skallagrim, with 1.63 million followers has created a 31-minute video, “What ME/CFS is, and how it is wrecking me” with over 170,000 views
https://www.youtube.com/watch?v=GILP6q7zUGY
See next post for a few quick thoughts
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #PwME #CFS @mecfs
1/
-
6/
“Why can medicine help so little?”
From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs -
5/
“What is pacing?”
From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @mecfs
-
4/
Extract from "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #SevereME
@mecfs -
We have been asked the following. Feel free to message us if you prefer:
“any chance please you know of any GPs in Kilkenny city that people are happy with ie they either have some knowledge about ME or at a minimum are sympathetic towards it?”
#MEcfs #Kilkenny #PwME #CFS #KilkennyCity @mecfs #mastodaoine
-
Gute Podcast-Folge der Wiener Stadtzeitung #Falter über ME/CFS mit meinem behandelnden Arzt als Gast.
Direktlinks:
mp3: https://sphinx.acast.com/p/acast/s/falter-radio/e/6a8d642a2fe0b9d0786afd78/media.mp3
Apple Podcasts: https://podcasts.apple.com/at/podcast/so-stellt-die-krankheit-me-cfs-meine-familie-auf-den/id1277077443?i=1000785902439
Spotify: https://open.spotify.com/episode/5TPXzQEIrYea6YHUkDYEK5
-
3/
From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
-
2/
From "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
-
🧵
I thought this 7-page introductory piece written by a medical doctor was very good"Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by Dr med Michaela Bauer
https://storage.e.jimdo.com/file/1caec72a-22b3-4dca-af70-7178d1d8562a/Understanding_MEcfs.pdf
#MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @mecfs
1/
-
On Friday I'll get a 24 hour blood pressure monitoring and 48 hour ECG (or maybe both will turn out to be 72 hours, since I don't plan to go to the hospital on Saturday and Sunday).
Then in November I'll have a cardiac stress test.There is no expectation that any of the tests will yield meaningful results, they are just needed to justify then having a tilt table test (I'm expecting months on a waiting list), which will lead to a diagnosis... of a symptom!
There is no plan yet how that diagnosis of a symptom (orthostatic dysregulation) will then help with the diagnosis of the disease, but hey, I only have it for 3 years so far.
Thanks to corona denialistm medical care for #mecfs, #PostCovid and other #PAIS is basically non-existant.
-
CW: disability, expenses, long covid, POTS
being disabled is always expensive (I have to pay more for things I can use instead of being able to do it myself), but here's an example of a cost that might not be obvious:
I have POTS (postural orthostatic tachycardia syndrome), which means my heartrate spikes when not laying flat :psyduck_sweat:
one tool used to mitigate some of the effects is compression leggings (from my ankles to the bottom of my ribcage), which were $30~40 for a decent pair...
which now doesn't compress my butt and torso very well because I've lost so much of my musculature over the last year of being bedridden :frog_sus:
I've been contemplating having to get a new pair that fits a bit better, but I'm also unsure how long that would last :bear_shrug:
#Disability #Covid #LongCovid #MECFS #POTS
p.s. if you're not disabled, I need you to take in this information, use it to fuel your empathy for disabled people (you will join us one day, as a note), and act on that empathy :hug_love:
-
The advocacy group NichtGenesen @NichtGenesen has written a 11-page rebuttal of a book chapter published in Psychotherapie.
https://link.springer.com/chapter/10.1007/978-3-662-72268-8_91
https://drive.google.com/file/d/1_9Tty4qG9O_7ce6Az0xuDDBddK0tvzzY/view
Automated translations
https://s4me.info/threads/chronisches-fatigue-syndrom-2026-alexa-alica-kupferschmitt-volker-k%C3%B6llner.52263/post-719676Screenshot from latest Science for ME weekly update
-
Today's video is going to be a bit late.
I've been hit with extra work due to a Universal Credit audit in which I appear to have made a mistake in my submission. Numbers have been extra hard for me this last week so the timing isn't great, just stupid ME/CFS brain difficulties.
PIP is still silent too, no updates whatsoever on the tribunal date, it's been over 6 months now.
I'm just stuffed. I shouldn't be working and yet... and yet...
-
In den vergangenen Jahren habe sich bereits viel bewegt. Ihr Fazit: „Es darf nicht aufhören, und es muss weitergehen.“
Mehr Informationen findet ihr auf unserer Website unter: https://www.fatigatio.de/aktuelles
#MECFS #LongCovid #Patientenbeteiligung #Gesundheitspolitik #Versorgung #Fatigatio
(3/3)
-
Here's the latest News in Brief (Sept. 7 - 13) from the Science for ME forum, a weekly summary of ME/CFS & Long Covid news including research, advocacy, and coming events.
https://s4me.info/threads/news-in-brief-september-2026.52320/#post-721450
Public posts on the forum can be read by anyone, but if you'd like to join the discussion then you'll need to become a forum member. It's free 😁
-
From Germany 🇩🇪
Postural orthostatic tachycardia syndrome in adolescents with ME/CFS
https://www.frontiersin.org/journals/pediatrics/articles/10.3389/fped.2026.1836407/full
Screenshot from latest Science for ME weekly update
-
Informal ME/CFS social meet-up in Dublin hosted by Tom Kindlon @tomkindlon on Wednesday, September 30
Hopefully we’ll see some of you there
https://irishmecfs.org/blog/wednesday-september-30-dublin-informal-mecfs-social-meet-up-hosted-by-tom-kindlon-irish-mecfs-associationCarers/parents/similar welcome.
-
When I say I have “brain fog”, this is what is actually going on:
1. I can’t think too much or at all bc my brain literally feels like it’s overheating
2. I can’t have conversations bc I keep forgetting what we’re talking about throughout the convo
3. Also I can’t recall words
4. It makes learning new things extremely difficult -
Meine Kolumne für das Mo Magazin für Menschenrechte über ME/CFS
-
2/
“Discussion of LP, its use of NLP, the SMILE trial, the Jason Busse LP trial was thorough and accurate.”
#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
@mecfs @longcovid
