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  1. J

    On fatigability and rationing as improved terminology over fatigue and pacing

    For me baseline/background fatigue (or low energy) is much more of a disabling factor than fatiguability. For example, I don’t have the issue of raising my hands above my head as being a problem. Maybe we are all different or have different diseases under a syndrome umbrella. Maybe all this...
  2. J

    Who are currently the best ME/CFS researchers?

    There are lots of threads on Daratumumab and cyclophosphamide—both pioneered by oncologist Fluge’s group. And there are other cancer treatments now being used for autoimmune diseases (e.g. CAR T and Tecli, etc.). Possible that treatments could come from JAK drugs or from whatever Ron Davis and...
  3. J

    Who are currently the best ME/CFS researchers?

    Treatments are coming from/will come from oncology.
  4. J

    Clare Gerada: influence on UK medical practice and ME/CFS management

    "Huge congratulations to our former Chair and President Clare Gerada on becoming a Crossbench Peer in the House of Lords. A lifelong College member and now a Baroness – but first and foremost a grassroots GP who continues to deliver exceptional care to your patients and to fight for the...
  5. J

    Who are currently the best ME/CFS researchers?

    Yeah, I’m a fan. I think he is one of the best ME/CFS theoretical people and he is always pretty transparent that he could be wrong.
  6. J

    Who are currently the best ME/CFS researchers?

    Also Rob Phair (not sure if you want to call him part of Ron Davis’ larger group because he is not at Stanford).
  7. J

    Well-known, famous people with ME/CFS (public thread)

    Porzingis with POTS—might be paywalled https://www.nytimes.com/athletic/6738610/2025/10/22/kristaps-porzingis-illness-explained-nba/?source=athletic_user_shared_article_copylink&smid=url-share-ta Also here...
  8. J

    Is the key pathology of ME/CFS in bone marrow?

    Wow—I thought this was a breakthrough paper.
  9. J

    Trial Report Low Dose Rapamycin Alleviates Clinical Symptoms of Fatigue and PEM in ME/CFS Patients via Improvement of Autophagy, 2025, Ruan et al

    Looks like the final version was published—hard to link to directly because X just put this new thing where it’s hard to copy links.
  10. J

    Is the key pathology of ME/CFS in bone marrow?

    I just posted this lupus preprint, which includes co-authors from UCL rheumatology @Jonathan Edwards which mentions (I think) that the spleen is a more important factor than bone marrow in Lupus. Post in thread 'Long-lived plasma cell (LLPC) theory - Similarities between CFS and Lupus?'...
  11. J

    Long-lived plasma cell (LLPC) theory - Similarities between CFS and Lupus?

    https://www.biorxiv.org/content/10.1101/2025.10.20.683393v1 Autoantibody origins in lupus and in relapse post CAR-T therapy Abstract Anti-CD19 chimeric antigen receptor (CAR)-T therapy induces profound remissions in lupus by depleting B cells, challenging the longstanding view that...
  12. J

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Took like a year and a half from submission to publication.
  13. J

    USA: JAX ME/CFS Center and Derya Unutmaz news

    On science, AI influencers, and intellectual honesty. Scientist turned “AI influencer” @DeryaTR_, who has taken at least some funding from OpenAI, has repeatedly gone after me, often with intellectual dishonesty. It’s a good case study. Derya knows perfectly well, as a scientist, for example...
  14. J

    BCMA T-Cell Engager Therapy in Patients with Refractory Autoimmune Disease 2025 Bucci et al.

    I wanted to see if the response timeline for tecli (BCMA) was similar to that of the CD-38 drugs like Daratumumab (~2 months).
  15. J

    BCMA T-Cell Engager Therapy in Patients with Refractory Autoimmune Disease 2025 Bucci et al.

    Tecli basically kills plasma cells by a different mechanism without CD38 involvement—this is my understanding.
  16. J

    BCMA T-Cell Engager Therapy in Patients with Refractory Autoimmune Disease 2025 Bucci et al.

    Paper—doesn’t indicate how long from first injection to first clinical response/improvement.
  17. J

    A Phase 3 Trial of Telitacicept for Systemic Lupus 2025 Erythematosus Van Vollenhoven

    Abstract BACKGROUND Telitacicept, a new dual inhibitor of the cytokines B-lymphocyte stimulator (BLyS) and APRIL (a proliferation-inducing ligand), showed efficacy in adults with active systemic lupus erythematosus (SLE) in a phase 2b trial when added to standard therapy. METHODS We conducted a...
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