Trude Schei @t_schei

Architect with ME, patient advocate, ass.gen.sek i ME-foreningen, always exhausted Joined June 2009

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World ME Alliance @WorldMEAlliance

2 weeks ago

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

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Ror Preston @RorPreston

2 weeks ago

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

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RonaldwDavis @Ronaldw_Davis

4 weeks ago

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:

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Maureen Hanson @DrMaureenHanson

4 weeks ago

See the press release about the Cornell ME/CFS Center's cell-free RNA paper. news.cornell.edu/stories/2025/0…

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Carole Bruce @CaroleBruce17

4 weeks ago

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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Maureen Hanson @DrMaureenHanson

4 weeks ago

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.

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World ME Alliance @WorldMEAlliance

a month ago

🏠 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

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Dr Michelle Bull 💙 @MichelleBull4

a month ago

@RobWust talking about things any health professional should know before considering activity/exercise for some with #ME and/or #LongCovid #UpdateYourKnowledge #DoNoHarm

ME Centraal @MECentraal

a month ago

@RobWust talking about things any health professional should know before considering activity/exercise for some with #ME and/or #LongCovid #UpdateYourKnowledge #DoNoHarm

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ME Research UK @MEResearchUK

a month ago

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

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Derya Unutmaz, MD @DeryaTR_

2 months ago

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!🙌

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The Jackson Laboratory @jacksonlab

2 months ago

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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Trude Schei @t_schei

2 months ago

ME-foreningen søker ny generalsekretær etter at Olav Osland går av med pensjon. Givende og interessant stilling i frivillig sektor, i en forening i vekst. me-foreningen.no/me-foreningen-…

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davidtuller @davidtuller1

2 months ago

Another coroner in England issues "report to prevent future deaths" in case of ME-related death. virology.ws/2025/07/21/tri…

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Marit Hjelsvold @memhj

2 months ago

‼️Professor Ola Didrik Saugstad Forteller om resultater & observasjoner fra Røysumtunet 💙En privat pleie-og omsorg institusjon tilpasset alvorlig og svært alvorlig pasienter m/ #MyalgiskEncefalomyelitt i samarbeid m @MEforeningen Manuskript innlevert youtube.com/watch?v=rlsrMg…

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davidtuller @davidtuller1

2 months ago

The BMJ @bmj_latest has not published a rapid resopnse from Maeve Boothby O'Neill's mum, Sarah, to its ME/CFS "hope" propaganda piece from members of the biopsychosocial ideological brigades. So I have posted it here: virology.ws/2025/07/23/tri…

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Dr Claire Taylor @drclairetaylor

2 months ago

RIP @Bridget_OShea ‘think of the time you had flu, think about how it would impact yr life if you felt that way every day for months on end -empathize The smallest morsel of sympathy can make 🌎 of difference for someone suffering misunderstood illness bridgetoshea.substack.com/p/coming-soon

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Rob Wüst @RobWust

2 months ago

Excited to announce that our team received a ⁦@ZonMw⁩ grant to study mast cells in Post-Exertional Malaise in Long COVID & ME/CFS. We focus on the interaction between immune cells & muscle ⁦⁦@VU_FGB⁩ ⁦@AMSmovement⁩ ⁦@TeamDerave⁩ amsterdamumc.org/en/research/in…

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Sten Helmfrid 🇺🇦 @StenHelmfrid

2 months ago

The biopsychosocial approach for #MECFS was first introduced in 1988. The best evidence that this paradigm doesn’t work is the so-called evidence they present for it. No single properly conducted RCT for 37 years, but anecdotal evidence, correlations, strongly biased trials etc.