Vi er mer enn 6000 som brenner for ME-saken - vil du bli en av oss? Den beste måten å støtte det vi jobber fir er å være medlem i ME-foreningen. Melder du deg inn nå gjelder medlemskapet ut 2027. www.me-foreningen.no/om-oss/bli-m...
Trude Schei
@tschei.bsky.social
ME patient advocate, architect by training
Mange interessante webinarer for fastlege, fysio, lærere - og selvsagt pasienter.
Norges ME-forening@meforeningen.bsky.social · yesterdayI november arrangerer ME-foreningen en serie webinarer om hvordan primærhelsetjenesten, skolen og andre som møter ME-syke i hverdagen kan bidra med hjelp og støtte. Følg lenken for å lese mer, og for å melde deg på ett eller flere webinarer. www.me-foreningen.no/ressurser/ku...
Sharpe will never accept that he's done any harm at all, he'll no doubt defend what he's done for the rest of his life, but I do hope others hear these words, look at the evidence, learn & change how they understand #ME & #pwME who've had this incalculable harm inflicted on them
Adam@abrokenbattery.bsky.social · 5d ago“The harm you have done is incalculable. It’s not me who has been spreading great harm around the world. It’s you, mate.” George Monbiot on being accused by Prof Michael Sharpe of “spreading” #LongCovid by writing about it and why he started writing about the #MECFS scandal.
"Studier på treningsterap i har bevist at ME og Long Covid er fysiske sykdommer, det er bare ingen som har fått det med seg" er tittelen på en artikkel fra Mark Vink. Les mer om hvordan han argumenterer på ME-foreningens nettside: www.me-foreningen.no/treningstera...
Treningsterapi for ME har bevist at ME er en fysisk sykdom - det er bare ingen som har fått det med seg
Hvis ME var dekondsisjonering burde trening gitt bedre kondisjon, og det gjør det ikke - noe studiene ikke diskuterer. Les om Vinks artikkel.
me-foreningen.no
Da er det igjen oktober! Blir du medlem i dag varer medlemsskapet ut 2027! Norges ME-forening eksisterer for at ME-syke skal bli sett og hørt. Vi er allerede over 6000 mennesker som brenner for å gjøre vilkårene for livet med ME bedre, og det trengs.
Den kjente britiske spaltisten George Monbiot har srevet om ME, og David Tuller har intervjuet ham om det. les om både spalte og intervju på ME-foreningens nettside: www.me-foreningen.no/george-monbi...
George Monbiot om ME - spalte i avisen og intervju med Tuller
Den kjente britiske journalisten George Monbiot har skrevet om ME, og blitt intervjuet av David Tuller. Se omtale på ME-foreningens nettside
me-foreningen.no
Nei, ME er ikke dekondisjonering. Endringene i musklene hos ME-syke er ikke de samme som man ser etter langt sengeleie. Les mer om ny forskning fra Rob Wüst og hans team på ME-foreningens nettside. www.me-foreningen.no/me-er-ikke-d...
ME er ikke dekondisjonering
En ny studie sammenligner muskler hos ME-syke med personer som er dekondisjonert - og det man ser er ikke det samme.
me-foreningen.no
ME-foreningens assisterende generalsekretær, Trude Schei, har blitt intervjuet i Dagsavisen, etter at george Monbiot skrev om at forholdene for norkse ME-pasienter var dårlige. Trude er enig - tusenvis av svar fra brukerundersøkelser tegner et forferdelig bilde. www.dagsavisen.no/nyheter/leve...
«Levende mareritt» for ME-pasienter i Norge
Voksne venter i snitt 6,3 år på diagnose, barn 10,6. Pasienter og pårørende forteller om et system som gjør mange sykere.
dagsavisen.no
8 Years to an #MECFS Diagnosis. Trude Schei of the Norwegian ME Association shares findings from a 2024 survey of 3,000+ people, including 500+ who became ill before 18. Average time to diagnosis: 8 years. Earlier recognition could mean earlier support. #PAIS #longcovid
1) 🇩🇪 The German ME/CFS Research Foundation has supported 7 research projects with a total budget of € 2.4 million. It includes a treatment trial of tafasitamab, which targets B-cells, and a genetic study of families with multiple members affected by ME/CFS A brief overview
Incidence age is bimodal for myalgic encephalomyelitis/chronic fatigue syndrome, with higher severity burden for early onset disease Open Access @simonmcg.bsky.social, Charles B Hillier , Joshua J Dibble , @tschei.bsky.social, Arild Angelsen , @aryback.bsky.social #ME/CFS #pwME
Incidence age is bimodal for myalgic encephalomyelitis/chronic fatigue syndrome, with higher severity burden for early onset disease
Abstract. Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), is a disease of uncertain origin. Studies of Norwegian health records have sugge
academic.oup.com
2025 update: Long COVID and ME/CFS cost Germany 64.4bn € a year. More than double the entire federal transport budget (27.9bn €). Costs keep rising even as Long COVID cases fall. Only research leads out of the crisis. Full report: https://t.ly/QeMez
#PEM and "energy coins" - a short video explanation of #PEM (the core and defining symptom of #ME/CFS) From the Norwegian ME Association @meforeningen.bsky.social Thank you @tschei.bsky.social
PEM and "energy coins" - a short explanation of PEM
YouTube video by Norges Myalgisk Encefalopati Forening
youtube.com
It was a delight speaking to @davetuller1.bsky.social about our recent paper lead by @simonmcg.bsky.social with @charliehillier.bsky.social, @tschei.bsky.social, Joshua Dibble and Arild Angelsen. We discuss why this is solid evidence for two age peaks in ME/CFS onset and the biological implications.
SSimon McGrath@simonmcg.bsky.social · 5mo ago
A great interview with Dr Audrey Ryback about the recent finding of two consistent age peaks in many European countries for the onset of ME/CFS. Follow-up work using the @actionforme.bsky.social Big Survey data hopes to give insight into early vs late onset differences @aryback.bsky.social.
Did you know there is strong evidence that people are most likely to develop ME/CFS at two points in life - at an average of age of 16 or 37? Read more about this new study led by @aryback.bsky.social 👉 edin.ac/4v3uIv0
Incidence of ME peaks in adolescence or early middle age | Institute of Genetics and Cancer | Institute of Genetics and Cancer
Researchers have found strong evidence that people are most likely to develop ME/CFS at two points in life, in a study that could help uncover causes of the disease and point to ways to prevent it.
edin.ac
Berkeley's crowdfunder for Trial By Error has received 350 donations!! Thanks to all who have supported my work over the years. Here's the link for the current effort: crowdfund.berkeley.edu/project/49720
Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc
Help UC Berkeley raise $75,000 for the project: Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc. Your gift will make a difference!
crowdfund.berkeley.edu
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...
Chronic diseases misdiagnosed as psychosomatic can lead to long term damage
A ‘chasm of misunderstanding and miscommunication’ is often experienced between clinicians and patients, leading to autoimmune diseases such as lupus and
cam.ac.uk
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
Incidence age is bimodal for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, with higher severity burden for early onset disease
Abstract. Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome (ME/CFS), is a disease of uncertain origin. Studies of Norwegian health records have sugge
academic.oup.com
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...
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iopscience.iop.org
'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...
Research uncovers ME/CFS's systemic impact for targeted therapies
Millions suffering from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a debilitating condition often overlooked due to the lack of diagnostic tools, may be closer to personalized care, ...
news-medical.net
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
@wamesmecfs.bsky.social · last yr.Drs Sommerfelt & Schei talk about the problems with using existing measures of functional capacity for peoplw with ME/CFS in healthcare - Measuring functional capacity (FUNCAP) In Norwegian with English captions and slides. [14 mins] tinyurl.com/45xmv2hw
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...
hvor mange får ME? (Veldig, veldig kort undersøkelse)
Kort undersøkelse om når ME-syke ble syke, hvor gamle de var, og når de fikk diagnose. Viktig at så mange som mulig svarer!
me-foreningen.no
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.
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.”
Tom Kindlon@tomkindlon.bsky.social · 2y ago8-year anniversary of reanalysis paper on recovery in £5m #PACEtrial, with data the PACE team fought so hard to keep to themselves. Shows recovery rates in all trial arms were low, using the criteria the PIs promised in their own protocol tandfonline.com/doi/full/10.... #MEcfs #CFS
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...
FUNCAP
- For patients diagnosed with ME/CFS - Self-evaluate and record your FUNctional CAPacity - Assess your capacity using FUNCAP55 or FUNCAP27 by scoring questions across 8 domains, eg
apps.apple.com