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Trude Schei

@tschei.bsky.social

ME patient advocate, architect by training

15 Posts290 Follower103 Folgt
ME/CFS Science@mecfsscience.org · 2mo ago

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

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valebodi.bsky.social@valebodi.bsky.social · 3mo ago

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

Audrey Ryback@aryback.bsky.social · 5mo ago

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.

Institute of Genetics and Cancer@uoe-igc.bsky.social · 6mo ago

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

Katie Klocksin, by the wayside@katieklocksin.bsky.social · 6mo ago

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

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Simon McGrath@simonmcg.bsky.social · 6mo ago

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

Billy Hanlon@bhanlon15.bsky.social · last yr.

'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

Michiel@murtoz.bsky.social · last yr.

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

George Monbiot@georgemonbiot.bsky.social · 2y ago

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.

Patients with Power@ptswithpower.com · 2y ago

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 ago

8-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

Screenshot of abstract
David Davies-Payne@d2p.bsky.social · 2y ago

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

Trude Schei@tschei.bsky.social · 2y ago

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...

Welcome! You are invited to join a webinar: Hva kan registerdata fortelle oss om prognoser og tilfriskning ved G93.3 diagnose?. After registering, you will receive a confirmation email about joining t...

Det er svært lite forskning på prognose for ME, og vi vet ikke hva som utgjør et normalt forløp for ME. Det finnes heller ikke tall på hvor mange som blir friske fra ME, eller hvor mange med ME-syke s...

us02web.zoom.us