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Trude Schei

@tschei.bsky.social
291 followers 103 following 15 posts

ME patient advocate, architect by training

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Reposted by Trude Schei
Long Covid The Answers @longcovidanswers.bsky.social · 30/08/2026
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
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Reposted by Trude Schei
ME/CFS Science @mecfsscience.org · 18/07/2026
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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Reposted by Trude Schei
valebodi.bsky.social @valebodi.bsky.social · 11/06/2026
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
academic.oup.com
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
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Reposted by Trude Schei
ME/CFS Research Foundation @mecfsresearch.bsky.social · 26/05/2026
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: t.ly/QeMez
The image shows the text "64.4 billion €", stating that long COVID and ME/CFS cost Germany 64.4 billion euros per year.The image displays text stating "The costs keep rising." It provides data on societal costs in Germany, noting they were 63.1 billion euros in 2024 and 64.4 billion euros in 2025, which represents 1.44% of Germany's gross domestic product.The image shows the ME/CFS Research Foundation logo and text explaining why costs are rising while COVID-19 cases remain high, citing the increasing number of ME/CFS cases, low recovery rates, and severe illness.The image contains the logo of the ME CFS Research Foundation and text stating "Only research leads out of the crisis. Biomedical research is the only path that can end the suffering of patients and the cost to society. That is what we are working for."
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Reposted by Trude Schei
valebodi.bsky.social @valebodi.bsky.social · 18/05/2026
#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
youtube.com
PEM and "energy coins" - a short explanation of PEM
YouTube video by Norges Myalgisk Encefalopati Forening
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Reposted by Trude Schei
Audrey Ryback @aryback.bsky.social · 04/05/2026
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.
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Reposted by Trude Schei
Institute of Genetics and Cancer @uoe-igc.bsky.social · 24/03/2026
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
edin.ac
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.
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Reposted by Trude Schei
David Tuller @davetuller1.bsky.social · 28/04/2026
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
crowdfund.berkeley.edu
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!
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Reposted by Trude Schei
Chronic Illness Humor @chronicillness.bsky.social · 07/04/2026
Artist: @thelatestkatie.bsky.social
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
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Reposted by Trude Schei
Katie Klocksin, by the wayside @katieklocksin.bsky.social · 07/04/2026
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...
cam.ac.uk
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
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Reposted by Trude Schei
Simon McGrath @simonmcg.bsky.social · 21/03/2026
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
academic.oup.com
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
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Reposted by Trude Schei
Jens Knapstad @jensknapstad.bsky.social · 21/09/2025
Ingen spesiell grunn til at flere med meg tenker på Horst Wessel i kveld
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Reposted by Trude Schei
FionaMECFS @fioname.bsky.social · 02/08/2025
"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...
iopscience.iop.org
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Reposted by Trude Schei
Billy Hanlon @bhanlon15.bsky.social · 26/07/2025
'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...
news-medical.net
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, ...
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Reposted by Trude Schei
Michiel @murtoz.bsky.social · 17/07/2025
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
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Trude Schei @tschei.bsky.social · 13/07/2025
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...
me-foreningen.no
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!
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Trude Schei @tschei.bsky.social · 05/05/2025
Webinar om nye retningslinjer for bl.a. ME youtu.be/MTVd1gGkxHM?...
youtu.be
Prosess og status rundt retningslinjearbeidet for langvarig utmattelse av uklar årsak inkl. CFS/ME
YouTube video by Norges Myalgisk Encefalopati Forening
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Reposted by Trude Schei
Chronic Illness Humor @chronicillness.bsky.social · 21/10/2024
#chronicillness #chronicallyill
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.
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Reposted by Trude Schei
George Monbiot @georgemonbiot.bsky.social · 17/02/2025
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.
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Reposted by Trude Schei
Tom Kindlon @tomkindlon.bsky.social · 27/12/2024
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
Screenshot of abstract
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Reposted by Trude Schei
Patients with Power @ptswithpower.com · 14/12/2024
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.”
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Reposted by Trude Schei
David Davies-Payne @d2p.bsky.social · 11/12/2024
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...
apps.apple.com
‎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
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Trude Schei @tschei.bsky.social · 24/11/2024
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...
us02web.zoom.us
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...
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Trude Schei @tschei.bsky.social · 22/11/2024
Vi trenger Nav-ombud i hele Norge. Her forteller Nav-ombudet i Agder hva de arbeider med. youtu.be/kleSOpx7Vm8
youtu.be
Nav-ombudet i Agder – hva de gjør, og hva de kan og ikke kan hjelpe med
YouTube video by Norges Myalgisk Encefalopati Forening
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Trude Schei @tschei.bsky.social · 22/11/2024
Nytt webinar fra ME-foreningen. Hvordan arbeider Nav med brukeropplevelsen? youtu.be/003s5lh2ayg?...
youtu.be
Hvordan Nav arbeider med å bedre brukeropplevelsen?
YouTube video by Norges Myalgisk Encefalopati Forening
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Reposted by Trude Schei
Anne Kielland, she/her @annekiel.bsky.social · 21/11/2024
New article on the prognoses of ME out now: www.sciencedirect.com/science/arti...
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Trude Schei @tschei.bsky.social · 16/11/2024
Nytt webinar fra ME-foreningen. Hvorfor krever Nav at ME-syke skal gjennomføre behandling som ikke virker? youtu.be/jtMYTn-fDZ8?...
youtu.be
Webinar: ME-syke, NAV og kravet om "hensiktsmessig" behandling
YouTube video by Norges Myalgisk Encefalopati Forening
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Reposted by Trude Schei
Gro @mesnag.bsky.social · 14/11/2024
What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?": www.sciencedirect.com/science/arti...
sciencedirect.com
What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?
Prognoses for persons affected by myalgic encephalomyelitis (ME) are rarely studied systematically. Existing studies are often based on smaller sample…
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Trude Schei @tschei.bsky.social · 24/02/2024
www.nettavisen.no/norsk-debatt...
nettavisen.no
ME er en reell sykdom
I Norge ser vi hver dag hvordan ME-syke skades, og hvordan et syn på ME som psykisk betinget bidrar til skaden.
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Trude Schei @tschei.bsky.social · 07/01/2024
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...
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Trude Schei @tschei.bsky.social · 04/10/2023
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...
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Reposted by Trude Schei
Norges ME-forening @meforeningen.bsky.social · 29/09/2023
FUNCAP - skjema for å kartlegge funksjonsnivå ved ME er nå ute som preprint, (ikke endelig publisert) og åpen for kommentarer!
preprints.org
Assessing Functional Capacity in ME/CFS: A Patient Informed Questionnaire
: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is an acquired disease with significant morbidity that affects both children and adults. Effective tools to assess functional capacity (...
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Reposted by Trude Schei
Jonas R. Kunst @kunstjonas.bsky.social · 24/09/2023
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.
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