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  1. Sasha

    United Kingdom: ME Association news

    Do they have similar symptoms at all? I know you've mentioned narcolepsy before but I'm wondering why these two?
  2. Sasha

    United Kingdom: ME Association news

    Was he aware that the idea that it's psychological is very widespread in the NHS generally?
  3. Sasha

    United Kingdom: ME Association news

    That's really interesting. We might have expected that but I think this is the first time I've heard it this being the spark to get researchers involved, especially in the face of the countervailing BPS narrative on Long Covid.
  4. Sasha

    United Kingdom: ME Association news

    This is a big surprise! Do you know why they got into it? (Wondering if that reason can be replicated elsewhere.)
  5. Sasha

    Trial Report REGENECYTE cord blood cell therapy in post-COVID syndrome: a phase IIa randomized, placebo-controlled trial, 2026, Huang et al

    What I was hoping for was a backlash within medicine against the FND rubbish within medical circles...
  6. Sasha

    Trial Report REGENECYTE cord blood cell therapy in post-COVID syndrome: a phase IIa randomized, placebo-controlled trial, 2026, Huang et al

    I hope that one day soon there'll be a massive backlash against all this harmful rubbish. Maybe we can spearhead it, which will unfortunately be probably once we've got a treatment, not before...
  7. Sasha

    Pros and cons of genetic studies of families who have multiple members with ME/CFS

    On another thread we've been talking about whether it would be a good idea to do genetic analysis of familes with multiple members who have ME/CFS, particularly if several get it as children (which would indicate a strong genetic 'signal'. I thought the topic deserved its own thread so here it is!
  8. Sasha

    Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation, 2025, Birch, Younger et al

    Thanks, Kitty, that's a fair point - I hadn't thought it through properly from all angles. Let's bin that idea!
  9. Sasha

    Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation, 2025, Birch, Younger et al

    Thanks, Andy, I haven't watched the whole thing. Did someone actually say that? What was the rationale?
  10. Sasha

    Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation, 2025, Birch, Younger et al

    If there's a possibility that Chris, or anyone else, is interested in doing this, would it be useful for the forum to try to identify such families from among its members and from public information, so that there's a bunch of known cases whom the researchers could approach? I wouldn't feel...
  11. Sasha

    Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation, 2025, Birch, Younger et al

    Can such families be directed to Chris? A crowdfunder could pay for their WGS in five minutes, I'm certain.
  12. Sasha

    Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation, 2025, Birch, Younger et al

    I think you mentioned before that it would be really interesting to look at the DNA of a family with three children under 13 with ME/CFS and here is one such poor family.
  13. Sasha

    Was our ME/CFS inevitable?

    Do you have any feeling for what the equivalent figure would be for ME/CFS, given the (scant) literature)? Or even just whether it's bigger or smaller than for RA?
  14. Sasha

    Was our ME/CFS inevitable?

    Does it make sense to ask, given that someone has ME/CFS, what the likelihood is that they would still have got it if they had dodged a particular infection but would of course be exposed to future ones? I'm thinking partly about what our futures will be like if some drug comes along that's an...
  15. Sasha

    Was our ME/CFS inevitable?

    Would all of us with ME/CFS have got it sooner or later? Particularly those of us with severe ME/CFS? Lots of us seem to have got ME/CFS following an infection, which makes me wonder whether, If we'd dodged that particular infection, we'd have been doomed to get it anyway, at some point. I...
  16. Sasha

    Why does some ME/CFS become very severe? Discussion thread

    I have ratcheted down several times following new flu/Covid infections. Over years, I tend to then improve, but the link seems crystal clear - get a bad viral infection, severe flu-like malaise continues for many months, don't regain function for years. Doesn't happen with every infection...
  17. Sasha

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

    If it's a stage in ageing, it implies that older people will consistently have lower counts - but the article didn't go into detail so my assumption there might be incorrect.
  18. Sasha

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

    But I thought that dara was shown to potentially work only in those with high levels of NK cells? (Could have got that wrong.)
  19. Sasha

    The Concept of ME/CFS

    I have just been reading this article, 'Ageing, fast and slow', from the 12 July 2025 issue of New Scientist. It presents evidence and argument (that I'm in no place to judge) that we don't age linearly but in bursts - that there is '... mounting evidence that , in multiple areas and systems of...
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