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  1. Sasha

    Notice about a forthcoming paper: A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma

    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? Would they be one-and-done treatments or would we be on them long-term?
  2. Sasha

    Coping with heat

    I was warned not to have reflective foil inside my window in case it overheated the glass and cracked it, so another reason to do this on the outside, not the inside.
  3. Sasha

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Is there any way that we here can help with that work?
  4. Sasha

    Notice about a forthcoming paper: A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma

    Very excited that the paper will be coming out tomorrow! Huge thanks to you and Jo Cambridge and Jackie Cliff for all the work you've put into it - and to you, for sticking around for ten years in order to study the problem deeply enough to be able to write it. Are there other drugs that...
  5. Sasha

    Comparing DNA Methylation Landscapes in Peripheral Blood from [ME/CFS] and Long COVID Patients, 2025, Peppercorn et al

    Is it surprising to find effects with such minuscule numbers of people - five in each group? Does this mean that if there's an effect, it's massive? I'm surprised they thought the study worth doing on only five each in the first place.
  6. Sasha

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    If no one has already, should someone be contacting Zhang et al. to attempt to replicate using the DecodeME database, and feeding back to them any concerns about design and interpretability discussed here before they do so? Edit: I forgot that DecodeME is a GWAS and that Zhang et al. look at...
  7. Sasha

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    That's an interesting suggestion. They include health and social care as a topic (presumably through a 'value for money' lens). A quick look at the first page of such projects doesn't throw up anything similar to what we'd need but I don't have the energy to look further. I'd like to get a sense...
  8. Sasha

    Patients with severe ME/CFS need hope and expert multidisciplinary care, 2025, Miller et al

    Well done, @Joan Crawford! This bit made me wonder whether it would be possible for a research group to do a post-treatment, possibly long-term follow-up audit of any of these clinics' patients. Such patients are in an extremely vulnerable position when their clinicians are asking them whether...
  9. Sasha

    Letter about ME/CFS and disability benefits in Sunday Times

    I was also once interviewed by a DSS doctor while I was lying in bed, and he was charming. In his report, he recommended that I was fit to start work immediately. The hard science can't come fast enough.
  10. Sasha

    [UK] A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform

    But we're talking about early-career researchers, who live from one short-term research contract to contract, some as short as six months. They can lose their scientific careers while waiting for a funding decision. They have to pay rent, buy food. All the people you mention, including yourself...
  11. Sasha

    Letter about ME/CFS and disability benefits in Sunday Times

    Great job, @Robert 1973, and I'm sorry for your horrible experience. I suspect most people here on the forum know how it feels to have your nose rubbed over and over again in what you can't do, in order to apply for benefits. It's horrible.
  12. Sasha

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    I thought WGSs identified every base on the genome. Is that not the case?
  13. Sasha

    ME/CFS as a biological information processing problem

    That's a really interesting and very surprising process! Thank you for explaining it. It gives me hope! I will give it a go myself! :woot::woot::woot:
  14. Sasha

    ME/CFS as a biological information processing problem

    You're a very impressive example of someone whose biology knowledge is self-taught! How did you do it?
  15. Sasha

    Preprint Dissecting the genetic complexity of myalgic encephalomyelitis/chronic fatigue syndrome via deep learning-powered genome analysis, 2025, Zhang+

    I went to see a rheumatologist about another matter (he was very interested to hear that you were interested in ME). He promptly rammed his thumbs into my joints and surprisingly to me, it made some of them hurt. They'd never given me any trouble, but he diagnosed me with fibromyalgia (which I...
  16. Sasha

    Unraveling the genetics of gulf war illness in diverse participants enrolled in the million veteran program, 2025, Pathak et al

    We don't seem to have discussed GWS for a long time. There used to be a lot of focus on it as possibly related to ME/CFS. Is that no longer the view?
  17. Sasha

    ME/CFS as a biological information processing problem

    I missed/forgotten the bit about the two kinds - is it a signalling kind and a 'something wrong with synapses' kind, that would amount to the same thing in terms of symptoms? That would be an excellent Christmas present. Are you thinking that your paper with Jo Cambridge and Jackie Cliff might...
  18. Sasha

    ME/CFS as a biological information processing problem

    I think that once we get an explanation of the biomedical cause(s) of ME, we're going to need an explanation for lay people, and analogies are going to help.
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