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  1. OrganicChilli

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    What's a proteasome and why would we want to inhibit it? Chatgpt says it has nothing to do with CD38. So are you suggesting an alternative pathway?
  2. OrganicChilli

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Yessir: https://www.s4me.info/threads/norway-plasma-cell-aimed-treatment-with-daratumumab-in-me-cfs-haukeland-university-hospital.44450/page-9#post-638421 https://www.sec.gov/Archives/edgar/data/1434265/000155837020011242/tmb-20200922xex99d1.htm?
  3. OrganicChilli

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    My understanding is that the patent for daratumumab, the active ingredient, runs out next year, but the patent for Darzalex, which is the drug given intravenously or subcutaneously, lasts until the 2030s. A trial for a biosimilar of the subcutaneous form is still under way but and will conclude...
  4. OrganicChilli

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    See here: https://www.s4me.info/threads/norway-plasma-cell-aimed-treatment-with-daratumumab-in-me-cfs-haukeland-university-hospital.44450/page-9#post-638427
  5. OrganicChilli

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    What about CD38 CAR-T cell therapy? Hypothetically speaking. https://jhoonline.biomedcentral.com/articles/10.1186/s13045-021-01170-7 https://pubmed.ncbi.nlm.nih.gov/37039305/
  6. OrganicChilli

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    I think I've asked this question before, but would Isatuximab be a good alternative for dara non-responders? Assuming that NK cell count is critical and isatuximab doesn't depend on it as much.
  7. OrganicChilli

    Increased expression of activation antigens on CD8+ T lymphocytes in Myalgic Encephalomyelitis/chronic fatigue syndrome, Maes et al, 2015

    Abstract Background: There is now evidence that specific subgroups of patients with Myalgic Encephalomyelitis / chronic fatigue syndrome (ME/CFS) suffer from a neuro-psychiatric-immune disorder. This study was carried out to delineate the expression of the activation markers CD38 and human...
  8. OrganicChilli

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Patient 5 is the one who initially responded to the treatment and then relapsed relatively quickly. She had 169 NK cells at baseline. In this chart it almost looks like natural fluctuation
  9. OrganicChilli

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Oh, I really don't know. Maybe you can ask in your next email. They're all very nice
  10. OrganicChilli

    Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

    Not a joke haha. I got another email. But I can't tell you. I'll let them announce it. Can neither confirm nor deny :D
  11. OrganicChilli

    Germany: ME/CFS Research Foundation

    Update of the ME/CFS Research Register: Norway and Iceland The ME/CFS Research Register now includes an overview of the research landscape in Norway and Iceland. In addition to ME/CFS research in Germany, Austria, Switzerland and the Netherlands, the Register now covers research projects...
  12. OrganicChilli

    Review A Perspective on the Role of Metformin in Treating [...] (ME/CFS) and Long COVID (2025) Fineberg et al

    It read to me as if in Utiskt's ideal and imo highly restricted world my doctor would discourage or prevent me from trying off-label drugs if they haven't been trialled specifically for ME/CFS, but perhaps I misunderstood.
  13. OrganicChilli

    Review A Perspective on the Role of Metformin in Treating [...] (ME/CFS) and Long COVID (2025) Fineberg et al

    If I take one drug at a time and have a stable baseline or a specific symptom that bothers me, I can usually tell whether it’s making a difference. I’m happy to trial (low-risk) drugs if there’s a chance I could regain some functionality. For someone mild/moderate, the potential benefits...
  14. OrganicChilli

    Review A Perspective on the Role of Metformin in Treating [...] (ME/CFS) and Long COVID (2025) Fineberg et al

    I don’t think we know enough about ME/CFS to justify a blanket ban. If some meds help some patients, they should be available off-label. Everyone has a different risk appetite, and that choice should be the patient’s, not imposed on them. Some people report improvements of certain symptoms from...
  15. OrganicChilli

    Norwegian Fluge & Mella daratumumab Haukeland trial 'ResetME' now accepting international donations

    I don't have a Twitter account, but maybe you can motivate people on r/cfs to reach out to him.
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