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  1. V.R.T.

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

    The responses in the ritux pilot do not look like the dara ones - someone posted them in one of these threads the other day. They are not anything like as sustained or as large. In phase 2 ritux failed in its primary outcomes but they went ahead because of secondary stuff iirc. I'm not saying...
  2. V.R.T.

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

    I think we could debate this til the cows come home but I disagree.
  3. V.R.T.

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

    I mean that F&M should have included controls in the pilot. If none of the controls had had sustained improvements like the improvers who got the drug did, we could be a good deal more confident that the results are not placebo.
  4. V.R.T.

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

    Can you say anything about any more targeted projects you're aware of? All I can think of is the CA10 investigations that JEs pain colleagues are setting up.
  5. V.R.T.

    Multi-omics identifies lipid accumulation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome cell lines: a case-control study, 2026, Missailidis et

    Exciting that you are uncovering other avenues! Are any of those projects written up/submitted or are they still ongoing?
  6. V.R.T.

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

    I think this should be standard. If F&M had done this with dara we'd be much further on by now.
  7. V.R.T.

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

    I don't think we have a timescale on SequenceME do we?
  8. V.R.T.

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

    And that's also why I have so much hope riding on the dara trial, try as I might to not put too much hope into it
  9. V.R.T.

    Researchers looking specifically at PEM?

    I think @MelbME is doing a good day/bad day study? And @jnmaciuch has mentioned wanting to do a study where blood draws are done on patients currently in PEM. Apologies if I've got either of these wrong.
  10. V.R.T.

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

    I think they are being told porkies by esteemed personages with vested interests.
  11. V.R.T.

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

    Yeah I remember isa maybe being better at depleting cd38 than dara or something? I can't remember, no spoons to look it up but I saved it somewhere. It would be a real turn up for the books if cd19 works. I'm glad CS seems to be moving swiftly with those trials.
  12. V.R.T.

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

    How would this be done?
  13. V.R.T.

    A thread on what people with ME/CFS need in the way of service

    I agree, this is odd. i suppose there are 2 LDN trials on going, one of which is testing pyridostigmine as well. But you would have thought if they're happy to give them to patients they would be pushing for formal trials...
  14. V.R.T.

    A thread on what people with ME/CFS need in the way of service

    Why did nobody make a case for Daratumumab or did this happen before the pilot was out?
  15. V.R.T.

    Is there a connection between ME/CFS and Sjogren's Syndrome? Discussion and a poll about testing

    Yeah a survival of the fittest/exercise worship culture has infiltrated every aspect of our lives and medicine is no exception
  16. V.R.T.

    Who benefits from multidisciplinary care in functional somatic disorders? Identifying cost-effective patient selection... 2026 Hammerman et al

    Yes who benefits? Governments and service providers and healthcare administrators and insurance companies. Not the bloody patients, thats for sure.
  17. V.R.T.

    Who benefits from multidisciplinary care in functional somatic disorders? Identifying cost-effective patient selection... 2026 Hammerman et al

    This is why we need advocates to stop using this phrase.
  18. V.R.T.

    Is there a connection between ME/CFS and Sjogren's Syndrome? Discussion and a poll about testing

    MECFS is a syndrome not a symptom.
  19. V.R.T.

    Is there a connection between ME/CFS and Sjogren's Syndrome? Discussion and a poll about testing

    So the same trigger seems to have caused the MECFS and Sjogrens. I've heard of that happening after covid too. Perhaps there is a clue in the fact they sometimes appear together
  20. V.R.T.

    Is there a connection between ME/CFS and Sjogren's Syndrome? Discussion and a poll about testing

    I hadn't heard this - can Sjogrens really cause MS? From your description it does sound like your friend has MECFS. What I find frustrating is people saying that 'we know x thing causes MECFS' without good evidence. I've not heard about MECFS being triggered by an autoimmune disease before...
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