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  1. 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.
  2. 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.
  3. 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.
  4. 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
  5. 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...
  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

    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.
  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

    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.
  8. 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.
  9. 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.
  10. 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...
  11. 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...
  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

    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...
  13. 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...
  14. V.R.T.

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

    If only...
  15. 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...
  16. V.R.T.

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

    Agreed this is the thing that really worries me. We are dealing with a situation in which the most promising drug trial in MECFS history could not find 2.2 million quid worth of funding from government or pharma. Nothing indicates the UK situation is any better
  17. V.R.T.

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

    Yes I would probably have found flexible work eventually and not needed UC anymore if I had not been psychologically messed about with by doctors until i ended up severe. Now I recieve the highest form of PIP. This is pretty common thing with pwME.
  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

    Thats a good point, in the pilot they took months to reach a normal step count.
  19. V.R.T.

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

    This is a great idea
  20. 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

    Until it began?
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