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  1. Jonathan Edwards

    The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering PEM: a systematic review (2020) Wormgoor

    There was nothing generous about it. I guess the broad grouping may have been driven by insurance politics as much as lazy mindedness but I don't think one can doubt that the rationale for CBT and GET revolves around the idea of misreading normal payback as pathological payback - which is all...
  2. Jonathan Edwards

    Lightning Process study in Norway - Given Ethics Approval February 2022

    Ah, maybe we are being unfair, or maybe not. Edit: on reading it seems not.
  3. Jonathan Edwards

    Lightning Process study in Norway - Given Ethics Approval February 2022

    I think there must be a typo there @Michiel Tack: Rona Moss-Morris, Professor of Psychology as Applied to Marketing, Head of Health Psychology, King’s College, London, UK. They don't actually believe in anything do they, except money.
  4. Jonathan Edwards

    UK: NICE Guideline: Rehabilitation for Chronic Neurological Disorders Including Traumatic Brain Injury

    That sounds good enough - presumably S4ME can apply to attend scoping as and when, if such things exist under lockdown. Unless of course interested parties have already muscled in and got started.
  5. Jonathan Edwards

    UK: NICE Guideline: Rehabilitation for Chronic Neurological Disorders Including Traumatic Brain Injury

    Interesting. Sounds as if it could be a can of worms that needs a bit a sorting out. Did S4ME get an email as a potential stakeholder?
  6. Jonathan Edwards

    The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering PEM: a systematic review (2020) Wormgoor

    But that is the point. When they believed patients were 'misreporting' the patients were reporting exercise intolerance. The BPS crowd wanted to study these 'misreporters' - i.e. PWME. I don't think they were interested in people who just said they were fatigued. They were interested in these...
  7. Jonathan Edwards

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Yes Jerome emailed yesterday to say he had finally got a result.
  8. Jonathan Edwards

    The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering PEM: a systematic review (2020) Wormgoor

    I also think there may be a confusion over the intentions of the PACE authors in recruiting. The impression may be given that they were just interested in fatigued people generally and so the trial was not really directed at ME. But I think this is wrong. The theories they had about people being...
  9. Jonathan Edwards

    The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering PEM: a systematic review (2020) Wormgoor

    This comment relates specifically to the breadth of the definition for inclusion criteria. There is nothing scientifically wrong with using broad inclusion criteria, along as they are adequately defined. Inclusion criteria do not need to match preconceptions of disease categories. Very often...
  10. Jonathan Edwards

    The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering PEM: a systematic review (2020) Wormgoor

    It may be a practical shortcoming but it is not actually a scientific problem. In all science you have to cast your net wider than the conditions that define any individual. If you cast wide your predictions can reasonably be applied to other cases that fall under the same classification. What...
  11. Jonathan Edwards

    The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering PEM: a systematic review (2020) Wormgoor

    Yes, although their hearts may be in the right place I get the impression that they have no idea of the weakness of virtually all physio trials. Perhaps not surprisingly. I am not sure that this emphasis on diagnostic categories helps. I think it probably distracts from the genuine scientific...
  12. Jonathan Edwards

    Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, 2020, Hannah Davis et al

    I wouldn't know but the CDC claimed they were biomedical, not BPS. I am afraid that small poor quality studies have been the rule from centres that do not take a BPS approach too!
  13. Jonathan Edwards

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    I spent ten years asking haematologists if any of the bortezomib drug family would deal with residual plasma cells in autoimmunity, and I asked some of the world experts on myeloma and on immunoablative therapies for autoimmunity. I was always told that it was not so easy. You do not get...
  14. Jonathan Edwards

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    Unfortunately it is remarkably difficult to demonstrate exactly what T cells are doing wrong. T cell populations in blood look pretty normal. T cells that traffic to specific compartments show up in those compartments - i.e. in skin for psoriasis and gut for Crohn's disease but nobody knows what...
  15. Jonathan Edwards

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    It is almost certainly what is going on in psoriasis, and the seronegative arthropathies, like ankylosing spondylitis. Nobody knows what the source of T cell activation is but it clearly present, at least in psoriasis. Other bits of evidence for these being T cell activation problems are the...
  16. Jonathan Edwards

    Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, 2020, Hannah Davis et al

    There are certainly a group of doctors who take a psychosomatic view. However, I know of many physicians who do not. They simply do not know how to start explaining ME. They accept that it is disabling but that does not help in working out how to help. The BPS approach causes a lot of distress...
  17. Jonathan Edwards

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    I agree with you that autoimmunity is not ruled out. It is just that the clues that suggested it have not panned out. The serendipitous finding of improvement in lymphoma patients no longer stand up as evidence for autoimmunity since if the treatment had worked that way rituximab should have...
  18. Jonathan Edwards

    The possibility of autoimmunity or auto-reactivity in ME/CFS

    As far as I know bortezomib does not kill a high percentage of non-malignant plasma cells. It is used to kill neoplastic cells in myeloma. If it was that easy we or others would have used it a decade ago.
  19. Jonathan Edwards

    Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, 2020, Hannah Davis et al

    Yes, but I would not confuse that with the popular 'qualitative approach' as recently promoted as an alternative to proper controlled studies. Ansell herself did not venture much into speculating on causal connections but her powers of observation were vindicated by her followers, like Pat Woo...
  20. Jonathan Edwards

    Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact, 2020, Hannah Davis et al

    All I can say, having been there for thirty years, is that however much this might seem useful, it isn't. I worked on RA without the benefit of any such longitudinal studies. Mary Corbett spent twenty years doing such a study three doors along from my office and when the final publications came...
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