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  1. Jonathan Edwards

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

    I don't see this as likely and I am not sure that it is as simple as that. If there is going to be any sort of forward-looking care system for ME/CFS that involves people with specialised experience (Caroline Kingdon or Luis Nacul for instance) who understand the issues around diagnosis and...
  2. Jonathan Edwards

    Latent gammaherpesvirus exacerbates arthritis through modification of age-associated B cells, 2021, Mouat et al

    I have never heard of that. As far as I am aware there is no significant connection of any sort known.
  3. Jonathan Edwards

    Latent gammaherpesvirus exacerbates arthritis through modification of age-associated B cells, 2021, Mouat et al

    As far as I am aware EBV infection is not associated with RA in any other sense that most people are infected with EBV. Mice should not be subjected to this sort of thing.
  4. Jonathan Edwards

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

    Should that be rephrased:we would be surprised if we do not see a press briefing from the Science Media Centre on these guidelines next week, with quotes from the usual suspects or people with similar views. ;)
  5. Jonathan Edwards

    BMJ editorial: Updated NICE Guideline on chronic fatigue syndrome, 2020, Stokes and Wade

    Reminds me of: Chico: “Naw. I dunna like it" Groucho:The first part of the party of the first part shall be known in this contract as the first part of the party of the first part shall be known in this contract-- Look, why should we quarrel about a thing like this? We'll take it right out, eh?”
  6. Jonathan Edwards

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

    Another thought - which someone may already have noted: In 2001/2 it would have been convenient for the assessment of the evidence to be promising but marred by methodological flaws. That would provide the perfect justification for the embryonic PACE. By 2007 the caveats would be an...
  7. Jonathan Edwards

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

    Yes, I think this would reasonably be regarded as unethical practice. I keep being tempted to write a rapid response to the BMJ news piece but I think best not. So there are two answers why the evidence became unsupportive. Documents at the time show that it was not supportive even then, and...
  8. Jonathan Edwards

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

    You are several steps ahead of me @Trish. I missed that you were responding to #1004.
  9. Jonathan Edwards

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

    I think this was before NICE took to using GRADE. As to how decisions were made then I have no idea. I guess the 2007 report will contain assessments of trials of some sort.
  10. Jonathan Edwards

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

    There is an interesting answer to this, maybe - the evidence became unsupportive because in the intervening period there was the 'definitive' PACE trial - which was unsupportive. In 2007 the 'evidence' was based on some small inconclusive studies. By 2020 we had seen a large multi-arm trial...
  11. Jonathan Edwards

    [Blog] BACME, NHS ME/CFS clinics shift from deconditioning to dysregulation model of ME/CFS in anticipation of updated NICE Guideline

    I agree with the points in the blog. 'Dysregulation' is a fairy story. Modern medicine is NOT THEORY-DRIVEN. Physiotherapists need to come to terms with that. It is evidence driven. If there is no reliable evidence from interventional studies then the evidence should come from experienced...
  12. Jonathan Edwards

    Non-pharmacological interventions for fatigue in rheumatoid arthritis (Cochrane Database 2013)

    I think all the authors are Bristol or King's. Five of them are on a paper describing a trial of non-pharmacological intervention for fatigue in RA. The first is a physio, the second a professor of nursing at Bristol. I am a bit surprised at John Kirwan getting putting his name to the...
  13. Jonathan Edwards

    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome, 2021, De Bellis, Montoya et al

    I just checked PubMed on papers relating Growth Hormone levels and responses to exercise. It lists 3,000 papers. Recent papers suggest that interactions are complex. I don't see this as anecdote. I would have thought it was very relevant if we are interested in understanding this study.
  14. Jonathan Edwards

    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome, 2021, De Bellis, Montoya et al

    I was hooping that you could substantiate your robust denial! I was taught years ago that population studies showed that in communities where women continue to do a lot of physical activity throughout life a Growth Hormone response to stimulus was maintained but in communities where women had...
  15. Jonathan Edwards

    Royal London Hospital for Integrated Medicine: Physiotherapy for Chronic Fatigue (CFS), Aug 5 2021

    But, as in the garage analogy, there is likely to come a point where people realise they are being conned. I think there is as much cock-up here as conspiracy.
  16. Jonathan Edwards

    Royal London Hospital for Integrated Medicine: Physiotherapy for Chronic Fatigue (CFS), Aug 5 2021

    A lot of them seem to be retired. There also seems to be a push for therapist-led clinics so physicians do not need to be involved so much. It may be that the rehabilitationists will fill the void but rehab has already been closed down once in history.
  17. Jonathan Edwards

    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome, 2021, De Bellis, Montoya et al

    On what basis? I thought that exercise generated a rise in GH normally and that prolonged inactivity blunted the GH rise in any subsequent activity.
  18. Jonathan Edwards

    Royal London Hospital for Integrated Medicine: Physiotherapy for Chronic Fatigue (CFS), Aug 5 2021

    What I see is an interesting change. The Royal Free used to have a physician led CFS clinic that took part in PACE under Gabrielle Murphy. Murphy is at least completely informed of the research background and was on the NICE committee. But this current blurb seems to be written by people who do...
  19. Jonathan Edwards

    Hypothalamic-Pituitary autoimmunity and related impairment of hormone secretions in chronic fatigue syndrome, 2021, De Bellis, Montoya et al

    Nit really. I wonder if low growth hormone levels are just a manifestation of limited activity.
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