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  1. Sean

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    @adambeyoncelowe Outstanding. Thank you. One for the history books. :thumbup::hug: That last sentence might be ambiguous to the uninformed reader. Suggested: But when only unblinded subjective outcome measures are used then the results become much less reliable. (I would argue strongly that...
  2. Sean

    United Kingdom: Science Media Centre (including Fiona Fox)

    Thank you for that excellent thread. :hug:
  3. Sean

    Yoga is effective in treating symptoms of Gulf War illness: A randomized clinical trial Hayley,Younger et al 2021

    A clear and concise description of the 'benefits' of most psycho-behavioural therapies.
  4. Sean

    Long Covid in the media and social media 2022

    Didn't see any mention of ME/CFS in there.
  5. Sean

    News from Scandinavia

    Shouldn't take long.
  6. Sean

    Functional Neurological Disorder (FND) - articles, social media and discussion

    I am encouraged by the amount of overt push back by both patients and clinicians/researchers that seems to be happening against FND. The Goldilocks theory of therapeutic failure. Finding the 'right balance', which can only be done with the careful guiding therapeutic hand of a experienced and...
  7. Sean

    A new science of emotion: implications for functional neurological disorder, 2022, Jungilligens, Perez et al

    I look forward to having ME without actually having ME. :whistle: And always has been. They have never let go of this idea, even though more than a century later they have failed to get it on a solid footing that allows accurate diagnosis and safe effective treatments. It still revolves around...
  8. Sean

    Long Covid in the media and social media 2022

    I agree that there is a real opportunity here for medical science to learn from differences between those who fully recover from Covid and those who don't. Whether they are up to learning those lessons in a good way is a different story, and sadly one with less hope if recent history is...
  9. Sean

    Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

    I don't think that we are 'entitled' to. But do think that trying to enforce the requirement of justified belief too vigorously has very serious technical problems and socio-political dangers.
  10. Sean

    BABCP 50th Annual Conference: Imperial College London 20-23 July 2022

    Acceptance and commitment therapy for Muscle Disease: a randomised controlled trial Trudie Chalder, King's College London, UK Yeah, sure it is.
  11. Sean

    Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

    PACE did use objective (or relatively objective) outcome measures, like the step test, 6 minute walk test, and employment and welfare use. Problem is they did not use them as primary outcome measures, the results were negative, and they have done everything they can to bury those results...
  12. Sean

    Facts and Myths about Chronic Fatigue Syndrome, 2022, Per Fink et al. (Danish Medical Journal article)

    It is almost axiomatic that every accusation from them against their critics is actually a confession of their own failings. I can't remember the exact numbers, but the proportion of patient reps on the NICE guideline committee was way below what was required to over rule the non-patient reps.
  13. Sean

    2022 Australia: New South Wales (NSW) Clinical Practice Guide for ... adults with post-acute sequelae of Covid-19 (PASC, Long Covid)

    That is my view. We are at the end of the beginning of the Covid-19 story. The main act is only just starting, and it is going to be a long one.
  14. Sean

    News from Aotearoa/New Zealand and the Pacific Islands

    This is the sense in which I use that word when I say that ME can be a distressing disease.
  15. Sean

    The biopsychosocial model is lost in translation: from misrepresentation to an enactive modernization, 2022, Stilwell et al

    Robust methodology would be a good place to start. Insisting on falsifiability in models and trials, for example. Just saying. The BPSM has been biomedicalized We have a long way to go. :facepalm::banghead::ill::grumpy:
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