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  1. Sasha

    2025: UK MEA Article and Video: ME/CFS: What you need to know about the disease

    They endless said, in relation to the critiques of PACE, that 'one size doesn't fit all', implying that the therapies in PACE would help some people but not others. They just couldn't seem to get their heads around what a null effect really means. They seemed to think it made some worse, made no...
  2. Sasha

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

    It's just the unbelievable continued reliance on bad methodology that I think needs pointing out, genetics studies or not. [Edit: But I understand there may be more important things to do!]
  3. Sasha

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

    What sort of samples do you need? Do they exist in a biobank or would you need to collect fresh ones? Have you thought of applying for funds to the ME charities? (Sorry, you may have already explained all this and I may have forgotten!)
  4. Sasha

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

    It's possible to make a rapid response to this madness: https://www.bmj.com/content/389/bmj.r977/rapid-responses Anybody fancy sticking the boot in? Hard?
  5. Sasha

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

    Is the thinking about mechanism that's going on here consistent with the thinking that's going on in the daratumumab work?
  6. Sasha

    Lightweight portable/folding seat/stool

    I bought a fantastically lightweight and comfortable collapsible chair from Amazon but it needs huge force to get the final foot of the chair into the fabric pocket on the seat that finally makes the chair rigid. Even using tools, my fingers aren't strong enough: I used to ask passing blokes to...
  7. Sasha

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

    I imagine it in a stripey jumper, wearing a mask and running away on its toes with a bag of swag over its shoulder.
  8. Sasha

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

    Who can we look to to unfold the story? What sort of researchers will follow up on this? Wondering if they're already in the ME/CFS field or whether we can invite them in.
  9. Sasha

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

    Tons of us have OI. Does anyone know what synapses would have to be messed up for OI to occur? Are any OI-type genes showing up in the Zhang results?
  10. Sasha

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

    Why don't the Zhang data need replicating? Normally with studies, especially small ones, we want everything potentially worthwhile replicated, don't we?
  11. Sasha

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

    If these findings are looking real then the big question is, how can we use them to advance most rapidly to treatment? Are they not worth much (black box, unreplicated) until the DecodeME results come out? Are they pointing precisely enough at mechanism to start up any lab work? Are they helpful...
  12. Sasha

    Pathophysiology of sleep disturbances/unrefreshing sleep in pwME?

    Do you think it's likely that we may then be better able to pick off individual symptoms like this with better targeted drugs even if we don't quickly get the 'one ring to to rule them all' drug that tackles ME/CFS at its root cause?
  13. Sasha

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

    That analogy only holds up if we can be certain that we're getting a true signal from both sources that's merely degraded by noise. I think we can take a standard GWAS or WGS analysis as providing a true signal plus noise but do we know that about this machine-learning technique? Could it b...
  14. Sasha

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

    If we will only have confidence in these results if they're confirmed by different forms of analysis that we can be confident in, I don't see what information these results are adding. Isn't this the very definition of confirmation bias?
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