Here is a link to the full survey report from theEMEA/Norwegian ME Association survey, with more than 11200 respondents from all over the world
www.europeanmealliance.org/documents/em...
We also asked about help and support from various actors, and experiences with coping and treatment strategies.
pic of a cat in a window and it says you're not wasting a day by resting - you're enabling yourself to feel better tomorrow the latest katie
Artist: @thelatestkatie.bsky.social
Article: Chronic diseases misdiagnosed as psychosomatic can lead to long term damage
This happens to nearly all myalgic encephelomyelitis patients. It’s brutal, but validating and important to see the harm named and studied.
#GreatestMEdicalScandal
www.cam.ac.uk/research/new...
Det er ikke alle som har helse til å gå eller sykle.
Skulle gjerne gjort det, men er avhengig av bil.
The survey report can be downloaded here. We looked at a lot more than onset - course of illness, experiences with and access to care, and coping strategies. 11200 respondents.
www.me-foreningen.no/europeisk-sp...
Patients were central to the team that found ME/CFS is most likely to start in the teens and early middle age. Two age peaks is unusual for any disease and might help unravel ME's causes.
academic.oup.com/ooim/advance...
1/
team credits to follow
Ingen spesiell grunn til at flere med meg tenker på Horst Wessel i kveld
"We propose that skeletal muscle tissue in ME/CFS and Long COVID-19 progresses through a hypermetabolic state, leading to severe muscular and mitochondrial deterioration. This is the first study to suggest such transient metabolic adaptation." #mecfs #LongCovid
iopscience.iop.org/article/10.1...
'Research uncovers ME/CFS's systemic impact for targeted therapies'
'This new research builds upon those findings by investigating how the gut microbiome, its metabolites, and immune responses interact.'
www.news-medical.net/news/2025072...
More amazing work coming out of the norwegian ME association. Between www.funcap.no and their survey of over 11k pwME at europeanmealliance.org/emea-pan-eur..., their work has daily relevance for me both in managing my condition, and in my activism for change.
Thank you @tschei.bsky.social
Har du ME eller long covid, og tre minutter til overs?
Svar på en veldig kort undersøke om når du ble syk, hvor gammel du var, og når du evt. fikk diagnose. Les mer på ME-foreningens nettside.
www.me-foreningen.no/hvor-mange-f...
Webinar om nye retningslinjer for bl.a. ME
youtu.be/MTVd1gGkxHM?...
I have this weird relationship with my chronic illness where I spend 75% of my time trying to pretend it doesn't exist and the other 25% trying to explain that it DOES exist to a bunch of people who don't believe me.
We're shocked by Trump and Musk's antics because we judge them against the idea that governments should serve the people. But they have no such intention. Government for them is simply about seizing power and wealth.
Let's stop being shocked, and build a global, democratic counter-movement.
Screenshot of abstract
Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence
onlinelibrary.wiley.com/doi/10.1002/...
#LongCovid #MEcfs @scheibenbogen.bsky.social
Wow. 8 years this paper has been out shining a clear, well-written light on the dodgy science done in the PACE trial. It still hasn’t been retracted. People like me with ME/CFS in Australia are still denied disability support cause we won’t do GET, and so “haven’t tried everything to get better.”
FUNCAP for iPhone
Version 1.1 now available on App Store
FUNctional CAPacity - a clinical & research questionnaire for #MECFS / #LongCOVID
- Score your own capacity
- Create a PDF report to save or share
- Optionally include heart and movement metrics
iOS 16+
Free
apps.apple.com/app/funcap/i...
Håper alt går bra!
Webinar med Anne Kielland mandag 25.11.
Hva kan registerdata fortelle oss om prognoser og tilfriskning ved G93.3 diagnose?
FAFO-forsker Anne Kielland har sett på data fra ulike registre, og sett på inntekten til ME-syke før og etter de fikk ME-diagnosen.
us02web.zoom.us/webinar/regi...
Vi trenger Nav-ombud i hele Norge.
Her forteller Nav-ombudet i Agder hva de arbeider med.
youtu.be/kleSOpx7Vm8
Nytt webinar fra ME-foreningen. Hvordan arbeider Nav med brukeropplevelsen?
youtu.be/003s5lh2ayg?...
New article on the prognoses of ME out now:
www.sciencedirect.com/science/arti...
Nytt webinar fra ME-foreningen.
Hvorfor krever Nav at ME-syke skal gjennomføre behandling som ikke virker?
youtu.be/jtMYTn-fDZ8?...
What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?": www.sciencedirect.com/science/arti...
Svar å en kort undersøkelse om ME-syke erfaringer med styrketrening. Her finner du mer informasjon og lenke til undersøkelsen.
www.me-foreningen.no/forundersoke...
Veldig bra fra Frøydis Lilledalen om håp og om hva som virker og ikke virker når de gjelder behandling av ME
www.dagensmedisin.no/mer-somatikk...
FUNCAP - skjema for å kartlegge funksjonsnivå ved ME er nå ute som preprint, (ikke endelig publisert) og åpen for kommentarer!
The unscientific gaslighting of #MECFS & #LongCovid patients continues. I have asked these individuals to provide me with research showing that a "persistent stress response" is causative for the disease. They could not provide it. Some people are hopelessly stuck in the past.
