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  1. Sasha

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

    I was hoping to get an auto-transcript from YouTube and run it through Google translate, but there seems to be no transcript. However, by mucking around with Settings (the little cogwheel thing), I'm now getting subtitles in English via some sort of live auto-translate thing.
  2. Sasha

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

    Did you say something on another thread about daratumumab being not an ideal treatment choice (as opposed to a test of principle) for some reason? Because it's cumbersome or risky or something? I might have got this wrong.
  3. Sasha

    What advances in Covid vaccines are on the horizon?

    A good question, but one for another thread, maybe!
  4. Sasha

    What advances in Covid vaccines are on the horizon?

    I'd been hearing about that work a few years ago, and it seemed to be a real mixed bag in terms of opinions about how effective they would be. Does anyone have a sense of how promising they are, even conceptually? I thought they were already in use in some countries but I haven't followed the...
  5. Sasha

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

    That's extremely good news. When people on immunosuppressive drugs, such as people with RA, attend hospital or a GP surgery, are any precautions taken to protect them from infection, or is that risk treated with the total disregard that it is for the rest of us? I've never understood the lack...
  6. Sasha

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

    Does rtx increase cancer risk because of the immunosuppression, and if so, do we know by how much?
  7. Sasha

    What advances in Covid vaccines are on the horizon?

    I've been asking on another thread about the implications of being treated with immunosuppressing drugs if @Jonathan Edwards's ideas about the mechanism of ME/CFS are correct and these are the drugs that we end up on. In a world of endemic Covid, being immunosuppressed will presumably be an...
  8. Sasha

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

    What happens in RA, for example? Are people on rituximab constantly? (Or is RA not a good comparison?)
  9. Sasha

    Coping competence and health outcomes in post-COVID: A prospective study on the role of adaptive strategies in symptom management... 2025 Koller et al

    No! Symptoms of post-exertional malaise are a risk factor for high information-seeking. :banghead::banghead::banghead:
  10. Sasha

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

    @Jonathan Edwards, you said on the pre-match thread, when I asked if all the likely treatment drugs would be horrible: You mentioned a while back that endemic Covid had changed the landscape of using (I think) the -mab drugs. Would that apply to the ones that you're thinking about, and that...
  11. Sasha

    Preprint Charting the Circulating Proteome in ME/CFS: Cross System Profiling and Mechanistic insights, 2025, Hoel, Fluge, Mella+

    I wonder if the lack of highly sedentary controls could be a problem here. I haven't read the paper but from a quote above: I don't think that matching for BMI is necessarily enough. I have a normal BMI but have lost muscle and gained fat, due to my extreme inactivity. One of those fancy...
  12. Sasha

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

    Can people who don't have an institution address post a comment on Qeios?
  13. Sasha

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

    People's mental models of what is going on can be very powerful, though. We read all the time about new PwME who didn't trust their own experience of decline and got repeatedly pushing into overdoing it.
  14. Sasha

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

    I've been thinking some more about this. I think an explanation would be useful for PwME, because the dominance of the BPS model - likely to continue for some time, especially if this is what your immunology colleagues think - mean that we'll need to defend ourselves against this kind of...
  15. Sasha

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

    A lot of these are sounding fairly horrible and potentially quite dangerous, given their immune-suppressing properties. I'm wondering whether there's a non-horrible view of our future that doesn't include continuing to have to shield (I've been shielding for five years now).
  16. Sasha

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

    I think that's an important argument to present, though, but rather than being part of this paper, it should be a standalone?
  17. Sasha

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

    Are there any implications of the model for vaccinations, either pro or con? I'm wondering if it means that more severely ill people are more likely to react badly to vaccines.
  18. Sasha

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

    It was a real shame that Prof. Kakkar never did the clinical trial he promised. We hear of PwME doing cryotherapy, with anecdotal success IIRC. Do we have trials of cryotherapy? Is there anything similar we could do without the heart-attack risk for those of us now knocking on a bit?
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