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  1. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I am beginning to think that the rift in which the hot potato lies is less to do with threats to the BPS crowd and more to do with a threat to the Cochrane community itself. There has been mention of difficulty in persuading people that exercise might not be good for everything. The people who...
  2. Jonathan Edwards

    The biology of coronavirus COVID-19 - including research and treatments

    90,000 bats would shit there every day. You would find as many viruses wherever there are bats but maybe this was the easiest place to go digging the shit out from.
  3. Jonathan Edwards

    Possible chronic viral infection in ME/CFS (& other illnesses inc Long covid). Discussion.

    I don't think we actually have evidence of response to anti-virals. Moreover, I cannot make sense of Naviaux's comment there - he says that responses must indicate persistent virus but then suggests that the drugs are working through other routes - so where is the evidence for persistent virus?
  4. Jonathan Edwards

    REAP: A platform to identify autoantibodies that target the human exoproteome, 2021, Wang et al

    Yes, antinuclear antibody rates have been reported and the consensus is that there is nothing specific to find. I don't have any references bt I think Lipkin and ME Biobank amongst others have looked. Venables looked in the 1990s and found anti-phospholipid antibodies but not ANA I think.
  5. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    But surely, Hilda, the only way to deal with this is to be honest about the reality. As you know I have absolutely no competing interests here. I write papers on neurophysics and go birdwatching. I am intrigued by a situation with on one hand a group of patients making an intelligent critique of...
  6. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    While we are about it it might be good to make sure Kay Hallsworth isn't Kate Hallsworth's auntie. Outside Yorkshire it is not a particularly common name. The ME community has been accused of mounting an organised campaign but when it comes to cronyism and back scratching behind the scenes it...
  7. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I don't think that addresses my query, Hilda. She obviously had a major commitment to it if she was a 'specialist' in that area. Well, that seems to indicate that whoever delivered the brief believed that there is an 'activist community' beyond people interested in good ME science. That is...
  8. Jonathan Edwards

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I am confused by all this stuff about Kay Hallsworth. I must admit it seemed odd for someone who was very grateful to rehab services for recovering to suddenly pop up unknown in the ME world. I also note that she has been involved in medical services not just as a patient but also very much as a...
  9. Jonathan Edwards

    Possible chronic viral infection in ME/CFS (& other illnesses inc Long covid). Discussion.

    As I said, some viruses like EBV persist and that is normal. If they are associated with illness they are associated with measurable pathology (not just antibody titres, pathology). So if ME shows no pathology of the sort we see with viral damage to cells then it doesn't fit.
  10. Jonathan Edwards

    REAP: A platform to identify autoantibodies that target the human exoproteome, 2021, Wang et al

    To be precise, rituximab depletes all CD20+ B cells from pre-B cells onwards to early plasmablasts. At least in some cases it depletes in tissue as well as blood although tissue depletion is variable. Virtually all antibody is made by plasma cells, which are in both spleen and marrow, with the...
  11. Jonathan Edwards

    Possible chronic viral infection in ME/CFS (& other illnesses inc Long covid). Discussion.

    Of all of the millions of PWME over the last five decades a few would have shown up virus used pathology if it was there. We have a few post mortem cases diagnosed in life as ME, with some odd neuropathological changes but nothing that really looked viral or really explained the illness. It...
  12. Jonathan Edwards

    Adverse outcomes in trials of graded exercise therapy for adult patients with chronic fatigue syndrome, 2021, White & Etherington

    Never heard of him but I suspect this says it all: (The conflict of interest being income for rehab.)
  13. Jonathan Edwards

    Possible chronic viral infection in ME/CFS (& other illnesses inc Long covid). Discussion.

    I think Michiel has the right analysis here. If even a significant subset of ME/CFS was due to persistent viral infection somewhere sometime someone would have found some barn door pathology in a case that got so bad the pathology showed up. All the chronic viral illnesses end up with barn door...
  14. Jonathan Edwards

    REAP: A platform to identify autoantibodies that target the human exoproteome, 2021, Wang et al

    It looks like a sensible technique. It would make sense to screen an ME/CFS cohort like the ME Biobank. The abstract does not say anything about rates of autoantibodies in normal healthy people - which of course is not zero. Quite a lot of healthy people have autoantibodies.
  15. Jonathan Edwards

    The Ethical Consequences of Medical Objectivity, 2021, Sevareid (Masters thesis)

    What might behavioural health be, I wonder? Nul points, I am afraid.
  16. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    Well, that might be a bit political and a bit transatlantic for me to say more. Although, I may have been exaggerating, judging by the filibuster this week.
  17. Jonathan Edwards

    Cognitive Behavioural Therapy for chronic fatigue and CFS: outcomes from a specialist clinic in the UK (2020) Adamson, Wessely, Chalder

    It is interesting to see Simon Wessely publicly putting his name to such ignorant remarks. Effectively, they are saying 'yes, just to be explicit, we really have no clue about how to gather reliable evidence'.
  18. Jonathan Edwards

    Aripiprazole - Abilify

    Responding to a deleted post about a German doctor prescribing larger doses of Abilify. I would just ignore it. I wouldn't go near an Abilify Facebook page. I don't think I would go near an 'ME/CFS doc' in Germany to be honest. Surely this is all just gossip. We live in a world where important...
  19. Jonathan Edwards

    Blog: "The patient voice: a biased or valuable source of information?"

    Thinking about it I think there is a further division of meanings. The BPS people consider biomedical to be a way of thinking. On here we use biomedical to refer to items of research that tackle biomedical rather than psychosocial questions. The BPS people would of course say that focus on these...
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