Trude Schei

Trude Schei

@tschei.bsky.social

ME patient advocate, architect by training

266 Followers 99 Following 10 Posts Joined Sep 2023
5 months ago
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Ingen spesiell grunn til at flere med meg tenker på Horst Wessel i kveld

152 55 0 2
7 months ago
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"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...

18 8 1 1
7 months ago
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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, ...

'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...

25 10 4 1
7 months ago

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

4 1 0 0
8 months ago
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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!

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...

5 4 0 0
10 months ago
YouTube
Prosess og status rundt retningslinjearbeidet for langvarig utmattelse av uklar årsak inkl. CFS/ME YouTube video by Norges Myalgisk Encefalopati Forening

Webinar om nye retningslinjer for bl.a. ME
youtu.be/MTVd1gGkxHM?...

3 0 0 0
1 year ago
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.

#chronicillness #chronicallyill

150 28 3 1
1 year 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.

4,487 1,137 103 40
1 year ago
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

34 13 2 2
1 year 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.”

32 11 1 0
1 year ago
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‎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

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...

54 27 5 2
1 year ago

Håper alt går bra!

1 0 1 0
1 year ago
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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...

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...

6 4 0 0
1 year ago
YouTube
Nav-ombudet i Agder – hva de gjør, og hva de kan og ikke kan hjelpe med YouTube video by Norges Myalgisk Encefalopati Forening

Vi trenger Nav-ombud i hele Norge.
Her forteller Nav-ombudet i Agder hva de arbeider med.
youtu.be/kleSOpx7Vm8

5 3 0 0
1 year ago
YouTube
Hvordan Nav arbeider med å bedre brukeropplevelsen? YouTube video by Norges Myalgisk Encefalopati Forening

Nytt webinar fra ME-foreningen. Hvordan arbeider Nav med brukeropplevelsen?

youtu.be/003s5lh2ayg?...

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1 year ago
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New article on the prognoses of ME out now:
www.sciencedirect.com/science/arti...

8 5 2 1
1 year ago
YouTube
Webinar: ME-syke, NAV og kravet om "hensiktsmessig" behandling YouTube video by Norges Myalgisk Encefalopati Forening

Nytt webinar fra ME-foreningen.
Hvorfor krever Nav at ME-syke skal gjennomføre behandling som ikke virker?
youtu.be/jtMYTn-fDZ8?...

1 0 0 0
1 year ago
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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…

What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?": www.sciencedirect.com/science/arti...

3 1 0 0
2 years ago
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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.

www.nettavisen.no/norsk-debatt...

4 1 0 0
2 years ago

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...

0 0 0 0
2 years ago

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...

0 0 0 0
2 years ago
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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 (...

FUNCAP - skjema for å kartlegge funksjonsnivå ved ME er nå ute som preprint, (ikke endelig publisert) og åpen for kommentarer!

11 4 0 0
2 years ago
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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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