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  1. Jonathan Edwards

    Preprint Virus Genome Sequences in the Blood of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients, 2025, Davis et al

    "be not the first by whom the new is tried, Nor yet the last to lay the old aside"
  2. Jonathan Edwards

    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    Any idea what oxidative damage is supposed to mean?
  3. Jonathan Edwards

    Common sign linked to old age could be a symptom of Parkinson's (Hearing loss)

    I wouldn't be terrified. I have been going deaf for twenty years and am now severely deaf but with good modern aids it makes very little difference to my life. Deafness does not cause dementia or Parkinson's as far as I know. It is just correlated.
  4. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    Yeah well, you said it. And we are very aware of the ethical issue and we spend hours arguing with each other to try and ensure that we are not putting out stuff that is misleading. When we put stuff out in fact sheets we try to stick to evidence and realities having spent thousands of hours...
  5. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    A sensible lay person should have worked out by the time they are 18 that people talk nonsense all the time, especially experts, and that nothing should be taken as authoritative. And that being the case they have no business to be passing any of this stuff on as if they were themselves...
  6. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    That was the old 1955 myth. Polio is an enterovirus. Acheson, or one of those, proposed that "ME" was an unknown polio-like enterovirus. John Chia picked up on this much later but it is a bit like going back to believing that malaria is due to bad air (mal aria). This is the level of of idiocy...
  7. Jonathan Edwards

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Ah, that's a confusing figure. So it is a best fit of 3% with very wide uncertainty, including 10-25%! I still go for 10-25%.
  8. Jonathan Edwards

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    It's a bit of a mess, yes, but I read it like this: DecodeME points to 9.5%+ . The Biobank data at 8%+ is similar. The insurance twin study doesn't look plausible. If h2 was 48% I think that would have been clinically obvious. It is a bit hard to know why this one should be so out of line but I...
  9. Jonathan Edwards

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    I don't actually know where sex ratio figures in h2 estimates - whether it is hived off as a separate issue.
  10. Jonathan Edwards

    Preprint Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome, 2025, DecodeMe Collaboration

    Yes, that is my understanding. However, my memory is that other data fit with ~10% and Chris gave the impression (I thought) that there were reasons to think this was most of the risk. My guess is that if genes are really rare they don't make much difference and if they aren't rare then it is a...
  11. Jonathan Edwards

    T cells promote microglia-mediated synaptic elimination and cognitive dysfunction during recovery from neuropathogenic flaviviruses, 2019, Garber+

    I think one can take concussion or ECT as examples where we have reason to think synapses get broken up. You get amnesia and lose memory for past events and you can also get loss of procedural memory. That means you get a fork out to beat an egg and your arm doesn't remember how to do it without...
  12. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    I think there is a complicated fudge calculation that takes into account the relative risk for the regions that look reliable results. I think it is probably given in the paper but the calculation will not have been described in detail. It may be an underestimate but it seems to fit with most...
  13. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    The 10% comes from various sources, including DecodeME. As Kitty says it is not about individual cases. At least 70% of cases are a bit genetic because they are women and two X chromosomes is genetic and confers risk. But for two any two identical female twins if one gets ME/CFS the chance of...
  14. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    Ancient history often continues to be taught for decades.
  15. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    But Simon Wessely did precisely that 40 years ago. And the theories put in place after he had scarpered fell apart with PACE. This is ancient history.
  16. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    We are in that place. We know a good deal about the biology. We have rather precise replicated data on demographics with about 0.8% prevalence and two age peaks. We have replicated data relating to association with EBV and several other infections. We have what looks like a reliable estimate of...
  17. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    The idea that the advocacy groups and charities will want to replace ICC ME with BPS seems to me somewhat comical!!
  18. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    I think the focus on theory is at the heart of it. Also the implication that the theory predicts harms we do not have evidence for. The PEM/PENE distinction reflects of the theoretical mindset of the ICC group. As has been said, it is fabricated and sounds uncomfortably like an exclusive club...
  19. Jonathan Edwards

    T cells promote microglia-mediated synaptic elimination and cognitive dysfunction during recovery from neuropathogenic flaviviruses, 2019, Garber+

    To me these are just standard pathways that are likely to be involved in brain damage. If you cut any one pathway you tend to see an improvement in an animal model set up to be bad enough to measure but not so bad nothing can alter it. T cells will activate microglia, yes. In brain that is...
  20. Jonathan Edwards

    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    I can't really follow the point @Midnattsol. You said standing up against doctors. We are not talking about whether it is right or wrong for doctors to ignore patients. It is obvious that is wrong. The issue is the potential harm from patients putting out misleading information to others, who...
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