Trude Schei
@tschei.bsky.social
ME patient advocate, architect by training
Reposted by Trude Schei
Ingen spesiell grunn til at flere med meg tenker på Horst Wessel i kveld
September 21, 2025 at 7:54 PM
Ingen spesiell grunn til at flere med meg tenker på Horst Wessel i kveld
Reposted by Trude Schei
"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/article/10.1...
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iopscience.iop.org
August 2, 2025 at 11:15 AM
"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/article/10.1...
Reposted by Trude Schei
'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...
'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, ...
www.news-medical.net
July 26, 2025 at 7:02 PM
'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...
'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...
Reposted by Trude Schei
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
Thank you @tschei.bsky.social
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
tinyurl.com/45xmv2hw
Sommerfelt/Schei - Measuring functional capacity (FUNCAP) - English subtitles
Enjoy the videos and music you love, upload original content, and share it all with friends, family, and the world on YouTube.
tinyurl.com
July 17, 2025 at 12:53 PM
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
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...
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!
www.me-foreningen.no
July 13, 2025 at 5:42 PM
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...
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?...
youtu.be/MTVd1gGkxHM?...
Prosess og status rundt retningslinjearbeidet for langvarig utmattelse av uklar årsak inkl. CFS/ME
YouTube video by Norges Myalgisk Encefalopati Forening
youtu.be
May 5, 2025 at 11:26 AM
Webinar om nye retningslinjer for bl.a. ME
youtu.be/MTVd1gGkxHM?...
youtu.be/MTVd1gGkxHM?...
Reposted by Trude Schei
October 21, 2024 at 1:31 PM
Reposted by Trude Schei
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.
Let's stop being shocked, and build a global, democratic counter-movement.
February 17, 2025 at 6:31 AM
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.
Let's stop being shocked, and build a global, democratic counter-movement.
Reposted by Trude Schei
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
onlinelibrary.wiley.com/doi/10.1002/...
#LongCovid #MEcfs @scheibenbogen.bsky.social
December 27, 2024 at 1:10 PM
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
onlinelibrary.wiley.com/doi/10.1002/...
#LongCovid #MEcfs @scheibenbogen.bsky.social
Reposted by Trude Schei
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.”
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
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
December 14, 2024 at 1:27 AM
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.”
Reposted by Trude Schei
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...
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
December 11, 2024 at 9:38 PM
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...
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...
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...
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
November 24, 2024 at 1:06 PM
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...
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
Her forteller Nav-ombudet i Agder hva de arbeider med.
youtu.be/kleSOpx7Vm8
Nav-ombudet i Agder – hva de gjør, og hva de kan og ikke kan hjelpe med
YouTube video by Norges Myalgisk Encefalopati Forening
youtu.be
November 22, 2024 at 11:33 AM
Vi trenger Nav-ombud i hele Norge.
Her forteller Nav-ombudet i Agder hva de arbeider med.
youtu.be/kleSOpx7Vm8
Her forteller Nav-ombudet i Agder hva de arbeider med.
youtu.be/kleSOpx7Vm8
Hvordan Nav arbeider med å bedre brukeropplevelsen?
YouTube video by Norges Myalgisk Encefalopati Forening
youtu.be
November 22, 2024 at 11:31 AM
Reposted by Trude Schei
New article on the prognoses of ME out now:
www.sciencedirect.com/science/arti...
www.sciencedirect.com/science/arti...
November 21, 2024 at 10:42 AM
New article on the prognoses of ME out now:
www.sciencedirect.com/science/arti...
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?...
Hvorfor krever Nav at ME-syke skal gjennomføre behandling som ikke virker?
youtu.be/jtMYTn-fDZ8?...
Webinar: ME-syke, NAV og kravet om "hensiktsmessig" behandling
YouTube video by Norges Myalgisk Encefalopati Forening
youtu.be
November 16, 2024 at 2:49 PM
Nytt webinar fra ME-foreningen.
Hvorfor krever Nav at ME-syke skal gjennomføre behandling som ikke virker?
youtu.be/jtMYTn-fDZ8?...
Hvorfor krever Nav at ME-syke skal gjennomføre behandling som ikke virker?
youtu.be/jtMYTn-fDZ8?...
Reposted by Trude Schei
What can wage development before and after a G93.3 diagnosis tell us about prognoses for myalgic encephalomyelitis?": www.sciencedirect.com/science/arti...
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…
www.sciencedirect.com
November 14, 2024 at 7:15 PM
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...
www.me-foreningen.no/forundersoke...
January 7, 2024 at 11:50 AM
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...
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...
www.dagensmedisin.no/mer-somatikk...
October 4, 2023 at 3:04 PM
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...
www.dagensmedisin.no/mer-somatikk...
Reposted by Trude Schei
FUNCAP - skjema for å kartlegge funksjonsnivå ved ME er nå ute som preprint, (ikke endelig publisert) og åpen for kommentarer!
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 (...
www.preprints.org
September 29, 2023 at 11:58 AM
FUNCAP - skjema for å kartlegge funksjonsnivå ved ME er nå ute som preprint, (ikke endelig publisert) og åpen for kommentarer!
Reposted by Trude Schei
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.
September 24, 2023 at 9:10 AM
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.