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Is that due to safety or due to cost? I don't think dara is particularly dangerous.

Apply now: ME/CFS Research Foundation launches 2026 research funding programme Starting today, scientists and clinicians based in Germany can apply for our research funding programme 2026. A total of €2 million are available for new research projects. €1.5m are set to be invested in clinical...

Abstract Antibody-secreting cells (ASCs) play a central role in the pathophysiology of systemic lupus erythematosus (SLE). This single-arm, open-label, phase 2 clinical trial aims to evaluate the safety and efficacy of the ASC-depleting anti-CD38 monoclonal antibody daratumumab in patients...

I think they published a single article a couple of months ago and people were urged to buy the magazine so the editors could get a sense of what everyone wants to read. It was shared widely on social media and I reckon pwME reached out to them and prompted them to pick up the topic again.

Blog by Timo Strottman Part 1 Part 2 AI summary: Activists framed Long COVID not as a new illness but as part of a broader category of post-acute infection syndromes (PAIS), linking it with ME/CFS — helping patients unify rather than compete for attention. This shared framing meant many...

The agenda for the conference in May has been published: https://events.mecfs-research.org/en/events/conference_2026/agenda It includes another presentation on dara. We might see results on LC cases and some preliminary results on severe cases.

And researchers. Scheibenbogen and co claim they can identify subgroups. Some of it may be marketing to get more research funded, but I suspect they really believe they're on the right track and patients believe her. But preferably the right kind. Money invested in viral persistence or Amatica...

Chris Ponting has been invited to the ME/CFS Research Foundation symposium in May. https://www.s4me.info/threads/germany-me-cfs-research-foundation.34818/page-2#post-662050

@Kitty thanks, that's very helpful!

I'm not sure. Is that somewhere in the NHS app? I've mentioned it to them in summer and the GP wrote that I prefer phone appointments because of fatigue (sigh)

I'm applying for ESA and the Jobcentre insists on monthly in-person visits until I get a WCA. They also need to confirm my ID, but I'm largely bedbound. I've spoken to them multiple times and they cannot do home visits or phone appointments. I'm waiting for a doctor's letter, but I'm not even...

Half-year report winter 2025: what have we achieved so far? https://mecfs-research.org/en/2025winter-report/ Research Funding New grants were awarded, including studies at Charité – Universitätsmedizin Berlin on physical and cognitive testing and potential brain imaging biomarkers. Since its...

They do. It's a popular social media diagnosis alongside POTS and (h)EDS.

To me it sounds like travelling is either some sort of adrenaline rush or something psychological. Some sort of Pavlovian conditioning probably. You're mild enough to travel so there's no reason why you should feel bad when sedentary regardless of location. I know you're going to disagree...

No, it's part of the NDPID. Isatuximab is probably independent of it.

Possibly. Isatuximab wasn't mentioned explicitly, only her group. Edit: speak of the devil https://www.bmftr.bund.de/DE/Forschung/Gesundheit/MedizinischeForschung/PostinfektiöseErkrankungen/postinfektiöseerkrankungen.html#sprg-3

They've mentioned Mitodicure and drugs Scheibenbogen is planning to trial. One of them is Isatuximab. She has not yet revealed which other drugs her group wants to trial.

https://www.abgeordnetenwatch.de/profile/florian-oest/fragen-antworten/herr-oest-werden-sie-sich-im-forschungsausschuss-aktiv-fuer-eine-deutliche-erhoehung-der-me/cfs The German X ME/CFS bubble is very upset about the lack of funding for clinical trials.

Really?!

I'm severe, but the only difference to being moderate is that I have a very small energy envelope. I get tired very quickly and it adds up throughout the day which means I feel best in the morning when I wake up and before doing anything. I feel worse when I wake up with PEM, but apart from that...