Trude Schei
@t_schei
Architect with ME, patient advocate, ass.gen.sek i ME-foreningen, always exhausted
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Postinfektiöse Erkrankungen und MECFS bringen enormes Leid, besonders für viele Frauen und Kinder. Endlich startet ein Programm mit 500 Mio um eine Heilung zu erforschen. Das ist realistisch, darauf warten die Betroffenen schon viel zu lange. Auch PostVac Forschung wird gestützt
The 2024 survey from European ME Alliance shows just how disabling ME/CFS can be: 💙 54% are mostly housebound 💙 Nearly 1 in 5 are mostly or completely bedridden ME/CFS is far from 'just fatigue', but an immensely debilitating & serious multi-system disease, which demands far…
Berkeley’s Crowdfunding Autumn 2025 in support of Dr. David Tuller’s project “Trial by Error” has now reached 72% of its target. Five days to go. If you intend to donate but haven’t yet, now is the time! crowdfund.berkeley.edu/project/47768
No Evidence Supports Using Graded Exercise for ME/CFS medscape.com/viewarticle/no…
"Trial By Error: Some Thoughts on Ten Years of Trial By Error" By David Tuller @davidtuller1 (25 October 2025) virology.ws/2025/10/25/tri… #MEcfs #CFS
Despite growing evidence, the myth persists: that exercise and positive thinking improve #MECFS. A new report from July reconfirms that graded exercise therapy is the least effective—and most harmful—intervention. #MEAwarenessHour
1) There's a new review on the impact of ME/CFS. It concludes that "ME/CFS imposes a substantial health, social and economic burden of disease" but argues that its true burden may be even higher because many patients likely remain undiagnosed.
Crowdfunding for Daratumumab clinical study me-foreningen.no/om-oss/stott-m… Image is screenshot from latest Science for ME weekly update #MEcfs #CFS
Disturbing🔥: Slide shown on day 1 of 2025 NIH Recover TLC workshop. “Definition of Post-Covid Fatigue Syndrome”. PEM is required (!) but NIH calls it “Post-Covid Fatigue Syndrome” - just like they changed M.E. to “chronic fatigue syndrome”. Why isn’t it “Post-COVID M.E.”?‼️
Funding for 7 new biomedical studies on #MECFS has been announced in the Netherlands. These new projects include investigating the molecular changes in the brain, inflammation, gut microbiota, orthostatic intolerance, viral reactivation and more! 🧪 👏 buff.ly/d9gyyok
Decades of research and medical neglect means that ME, and now Long COVID, still have zero FDA-approved treatments 💊❌ Zero. By contrast, other major diseases (now with lower total disease burdens) have dozens. Hard to recover without treatment... #MECFS #LongCovid #IACI
Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: stanford.zoom.us/webinar/regist… See photo below:
See the press release about the Cornell ME/CFS Center's cell-free RNA paper. news.cornell.edu/stories/2025/0…
Jared Younger has been looking at the @DecodeMEstudy and offers an explanation and his further thoughts. #ME youtu.be/clwN51nkZAk?si…
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068 - New results from a (very large) ME/CFS genetics study!
The latest paper from the Cornell ME/CFS Center is in PNAS today. RNA released into the blood differs in cases vs sedentary controls, who can be distinguished at 77% accuracy. Biological network analysis shows dysfunction of the immune system in ME/CFS, as in other assays.
🏠 Four walls. One darkened room. For many with Severe ME, this becomes their entire world. They need change now. High quality healthcare, research to find treatments and recognition of all they endure. #SevereMEDay #Housebound #Bedbound #SevereME #HiddenButHere #BeTheLight
@RobWust talking about things any health professional should know before considering activity/exercise for some with #ME and/or #LongCovid #UpdateYourKnowledge #DoNoHarm
.@RobWust talks about the ventilatory threshold, #PEM & lactic acid due to over-exertion in #MEcfs and #LongCovid. 👉Watch this & other videos in this series here: youtube.com/watch?v=M_7twe… (with subtitles)
We now have a more detailed description on our website of Prof. Oltra and her team's latest paper showing how HERV activation can distinguish between ME/CFS and fibromyalgia patient groups. bit.ly/45l2KQn
Super excited that our landmark @NatureMedicine paper on ME/CFS is out! 🎉 This was years in the making & only made possible because of AI! Big implications for clinical translation, therapeutics. Will do deep-dive thread later today, stay tuned. Grateful to the whole team!🙌
Hope could be in sight for sufferers of myalgic encephalomyelitis/chronic fatigue syndrome #MECFS and long COVID. New research shows how the gut microbiome may predict these so-called "invisible" diseases, which are notoriously hard to diagnose. jax.org/news-and-insig…
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