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  1. J

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

    I’ve had a very smart person mention that they thought isa would be better than dara. I asked one of the Haukeland people why they chose dara over isa and she mentioned that dara was the older drug and therefore had a better (longer) safety record. Having said that, I think you are still going...
  2. J

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

    Are we putting a lot of (or any) faith in Michael Maes? This is the guy who publishes many dozens of papers per year.
  3. J

    News from the USA, United States of America

    Shockingly, RFK jr made a true statement.
  4. J

    Growing old versus ME/CFS—which is which?

    Aging and ME/CFS share a lot of symptoms/characteristics: Decreased stamina, vigor, endurance Worsening of sleep Increased need for naps Increase in forgetfulness (i.e brain fog) Increase in aches and pains If you’ve had ME/CFS for a long time and are middle-age and beyond, how can you tell...
  5. J

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

    Can we have a plain English translation of this for us lower IQ folks? Thanks.
  6. J

    Should I raise funds for Edinburgh/AfME or Daratumumab Phase 2?

    Dara. Treatments are what we need.
  7. J

    Upadacitinib (rinvoq)--could it reduce fatigue in ME/CFS?

    Three clinical trials for Long COVID are testing JAK inhibitors to treat immune dysregulation https://thesicktimes.org/2025/08/05/three-clinical-trials-for-long-covid-are-testing-jak-inhibitors-to-treat-immune-dysregulation/ This article was posted on this forum on a different thread.
  8. J

    Stop looking for a silver bullet. Start mixing the Long COVID cocktail. Sick Times

    Isn’t that true tho? For every supplement there seems to a regular version that regular people use, and a super bioavailable version that only the smart kids know about (and spend more money on).
  9. J

    Stop looking for a silver bullet. Start mixing the Long COVID cocktail. Sick Times

    https://thesicktimes.org/2025/09/12/stop-looking-for-a-silver-bullet-start-mixing-the-long-covid-cocktail/ Research must test combinations of drugs to tackle different underlying biological issues at the same time. Umm sort of underwhelmed by this article. How about we find one thing that sort...
  10. J

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

    Like how much blueberries? 500g/day? I could probably eat that much no problem.
  11. J

    Ozempic, tirzepatide and other GLP-1RAs - impact on ME/CFS

    https://www.nature.com/articles/s41380-025-03261-0 Glucagon-like Peptide-1 receptor agonists as emerging therapeutics in bipolar disorder: a narrative review of preclinical and clinical evidence Abstract Bipolar disorder (BD) is a chronic and disabling psychiatric illness characterized by...
  12. J

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

    Correct. The item I posted about was the amendment to the pilot study NOT the P2. I assume they went with the more frequent dosing in phase 2 as more of a CYA strategy.
  13. J

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

    Post in thread 'Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al' https://www.s4me.info/threads/plasma-cell-targeting-with-the-anti-cd38-antibody-daratumumab-in-me-cfs-a-clinical-pilot-study-2025-fluge-et-al.44736/post-627073...
  14. J

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

    Yes I think that Fluge doesn’t think many Dara injections are needed. That’s why they amended the pilot study to include a week 0 ,week 10 (only if there is no response), week 24 and week 48. I think the multiple injections protocol came from multiple myeloma where I assume patients are...
  15. J

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

    Well we do have anecdotal evidence for non-CD 38 LLPC depletion being effective. Disulfiram is actually a proteosome inhibitor. Threads about disulfiram (improvements) here: https://www.s4me.info/threads/treatment-with-disulfiram-antabuse-seems-to-help.11685/...
  16. J

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

    For the record, and not directly related to this discussion but there are new proteosome inhibitors like ixazomib, which can be taken orally and supposedly have a better side effect profile than bort. https://en.wikipedia.org/wiki/Ixazomib
  17. J

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

    Based on the very small sample size of people who have tried Rinvoq and improved—it takes 2-3 months of taking the med and then the improvement comes after you finish taking the drug. E.g. Post in thread 'JAK1 Inhibitor Rinvoq Quickly Returns Severely Ill ME/CFS Patient to Health - Parts I and...
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