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  1. Sasha

    Twin with ME/CFS wants to be a research subject

    I did, that's why I was confused.
  2. Sasha

    Twin with ME/CFS wants to be a research subject

    That's a big surprise that twins are not genetically identical! Fat lot I know about biology.
  3. Sasha

    Twin with ME/CFS wants to be a research subject

    This seems a bit counter-intuitive! Can you explain why? I'm used to thinking that genetic differences between cases and controls point to genes, which point to mechanism, but if you have genetically identical people, how does that help?
  4. Sasha

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    That's interesting. I wonder if that would mean, though, that you'd expect the level of the intolerances to be correlated, such that a person who is very intolerant to sensory stimuli would also be very intolerant to meds, and vice versa. I'm completely tolerant to sensory stimuli AFAIK but have...
  5. Sasha

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    This thread has got away from me now but has there been any discussion of how the theory might explain why some many PwME seem to react badly to medications?
  6. Sasha

    If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

    I don't think it does relate to the brain, just to regaining muscle and mobility.
  7. Sasha

    If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

    That's very interesting! But I've read that the longer you're immobile, the longer it takes to recondition. I don't know if that relationship plateaus but I do also worry that reconditioning might be particularly difficult for older PwME (because older people generally find it harder to put on...
  8. Sasha

    Lull: Designing Crip Pacing Technologies for Rest, 2025, Homewood

    Not a fan of the term 'crip theory' either. I know there's a history of stigmatised people taking ownership of words used to insult them but I don't particularly want to internalise this one.
  9. Sasha

    Petition to request updating of the description of ME/CFS in Kumar and Clark’s Clinical Medicine textbook.

    Speaking of medical education, I hope somebody is collecting all this mad rubbish, in order to educate the profession on what happens when you make logic-free assumptions and treat the resultant conclusions as fact.
  10. Sasha

    University Hospital Regensburg: project “Miracle” investigates the invisible burden of ME/CFS

    Nothing moderate about being housebound! :) I think our thresholds have generally gone a bit weird.
  11. Sasha

    If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

    We wouldn't be just unfit, we'd have wasted muscles, weakened bones, our bodies would have altered themselves to adapt to our slumped seated or recumbent posture, etc. etc. We wouldn't just be your average couch potato. And are they good at treating people who are healthy but just unfit? I...
  12. Sasha

    If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

    In older people, I think that rehab is going to be harder, because it's harder to build muscle mass and those with osteoporosis are going to need to be careful. Many of us will last remember a health body from decades ago and it's going to be hard to manage expectations.
  13. Sasha

    If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

    That's a very interesting idea. I'd be interested to know what others think about this. Is there a potentially interesting project there?
  14. Sasha

    If an effective treatment comes along for ME/CFS, how can we physically rehabilitate ourselves?

    Many PwME have been largely immobile for decades, with wasted muscles, osteopenia/osteoporosis, and poor cardiovascular fitness. Many of us are now elderly. If an effective treatment comes along, we're going to want to try to recondition our bodies, but physiotherapy as a profession has...
  15. Sasha

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    I think you said that Qeios has some AI thing that automatically sends papers out to reviewers it thinks would be appropriate. Is it worth doing something a bit more hands-on, not necessarily to elicit reviews but just to dangle this interesting carrot in front of some useful people who might...
  16. Sasha

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    The paper has been viewed over 8,000 times and downloaded over 1,200 times now, and it's occurred to me to wonder who has been reading it. The ME/CFS field of researchers is tiny. Do we think the paper has pulled in a far wider audience of scientists, or is it likely that most of the interest is...
  17. Sasha

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    This is where we need something bigger than a 'Like' button.
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