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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

    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.
  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

    How would this be done?
  3. 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...
  4. 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?
  5. 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
  6. 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.
  7. 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.
  8. 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.
  9. 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
  10. 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...
  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

    Me neither, but its a distinct possibility imo given the NK cell separation in the pilot and the fact that daratumumab uses nk cells. Isn't NK cell count correlated with dara response in MM? Either way we don't know anything for sure yet and there are many other possibilities.
  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

    Is this the guy who responded after six months? I don't know if we can attribute that to the drug. But if we could it would be interesting.
  13. V.R.T.

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

    I'm reassured people think there will not be anymore bureaucratic obstinacy if we have some decent evidence. I hope that's true. I guess the SequenceME/general MRC letdown has made me cynical.
  14. V.R.T.

    Placebo effect: a psychosomatic component, or only an aggregate of other biases?

    Good Lord, you couldn't make it up. Or to put it another way, they could and did. It is troubling how many doctors and researchers seem to believe in placebo and nocebo as essentially magic.
  15. V.R.T.

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

    Is there any good studies or surveys on antidepressants in MECFS? My loved ones sometimes encorage me to try them again for my depression but I am concerned about the effect it will have on my MECFS. I had to discontinue them the times that I trialled them in the past, but didn't try nearly as...
  16. V.R.T.

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

    My concern is - who gets to decide when we do have a valid rationale? Is it the same bureaucratic machine that thinks the DHSC plan is appropriate and SequenceME wasn't a good investment? It may be that something comes up in the near future that shows us some of the mechnism- surely we need to...
  17. 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

    But isn't the anktiva guy sort of shopping it around trying to find a clinical use for it? In the scenario we're talking about this would be a good and profitable one. That would be really unfortunate- I don't know enough to say how likely it is though. I think JE said a while back he thought...
  18. 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

    Surely in that scenario more than half of patients who got the drug would respond because they are only enrolling people with higher NK cell counts. But other than that, what you've described would be pretty much the best case scenario- especially if NK cell count turned out to just correspond...
  19. V.R.T.

    Germany's "National Decade Against Post-Infectious Diseases"

    If only...
  20. V.R.T.

    Germany's "National Decade Against Post-Infectious Diseases"

    Its so frustrating cos if they dont want the money there are so many committed researchers who could use it...
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