Search results

  1. 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.
  2. 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.)
  3. 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...
  4. Sasha

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

    I have just read in this article in the New Scientist (paywalled, sorry, I've got the paper version, no references given) that '...some key immune system cells, including B cells, T cells and natural killer cells, experience two bursts of decline and ageing around the ages of 40 and 65, probably...
  5. Sasha

    Why are children and young people more likely to recover from ME/CFS than adults?

    Possible AI cobblers from Google but the timeframe maybe fits?
  6. Sasha

    There aren’t any answers, we are looking for them and will support you until we find them

    I find that final line simply confusing, since it doesn't say what sort of help we want - and leaves us open to BACME 'helping' us, or to them claiming that they already are.
  7. Sasha

    Why are children and young people more likely to recover from ME/CFS than adults?

    I was arm-wavingly trying to convey whatever cut-off we believe to be the case, from the epidemiology/folklore, where being young seems to help you recover. I don't know whether there's some kind of recovery-rate drop-off at puberty and my impression has been that you still have a much better...
  8. Sasha

    There aren’t any answers, we are looking for them and will support you until we find them

    I'd say not, because 'them' clearly relates to the most recent plural noun, which is 'treatments'. I'd stick with 'it has'.
  9. Sasha

    There aren’t any answers, we are looking for them and will support you until we find them

    I think this could be death by a thousand cuts, where we just pile on one more thing, and one more thing. It already feels baggy to me to add that on (sorry!). There are so many things that we could say about how awful and important it is and about why people should care, but the more we say...
  10. Sasha

    There aren’t any answers, we are looking for them and will support you until we find them

    I agree, which is why I mentioned medical care (particularly with the whole refusal of tube-feeding as the extreme case). It can but it's too broad. People could easily interpret it as needing psychological support, or just moral support.
  11. Sasha

    There aren’t any answers, we are looking for them and will support you until we find them

    Wondering if we need to be more specific about what sort of support we want because - well, you know. What about, 'We need medical care until then'?
  12. Sasha

    There aren’t any answers, we are looking for them and will support you until we find them

    The more detail you add, the less impact the statement will have. I wouldn't add anything else.
  13. Sasha

    There aren’t any answers, we are looking for them and will support you until we find them

    I agree, that's exactly what we want our charities, governments, doctors and healthcare systems to be saying. It shouldn't be so hard for them to do it but it will involve both humility and being able to accept their own discomfort about not being able to offer more.
  14. Sasha

    Why are children and young people more likely to recover from ME/CFS than adults?

    Thanks! Just captured some quotes from that, some of the very prescient of where we seem to be theorywise at the moment.
  15. Sasha

    Why are children and young people more likely to recover from ME/CFS than adults?

    Can't believe it never occurred to me to ask this question before! Does it tell us anything about mechanism?
  16. Sasha

    Do you have any ideas for topics for PRIME seminars?

    What about a seminar on the overlap between ME/CFS and Covid? It's weird that Covid research seems epic in its disregard for the ME/CFS subcohort.
  17. Sasha

    Do you have any ideas for topics for PRIME seminars?

    How about something on the epidemiology of ME/CFS? When we were doing the 'Intro to ME/CFS' factsheet, the absence of basic facts about ME/CFS was striking - how many people have got it, recover from it, die from it, are housebound, are bedbound, are in the 'very severe' category, timecourse...
  18. Sasha

    Do you have any ideas for topics for PRIME seminars?

    Thank you for bringing in all these new people! Is there anything that you think that they and the other new people you've been trying to bring on board would be interested in having a seminar on? Also, could an interested clinician set up an NHS clinic off their own bat or does it have to be...
Back
Top Bottom