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  1. Sean

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    It's pathetic, isn't it. They will not commit to the one thing that will help both us and their short-sighted budgetary obsessions, which is a solid basic research program. How many decades have been lost now because of this and the blocking of non-psych research by the psychs?
  2. Sean

    Anyone tried full-bed-width over bed tables?

    What angle is it (approx.)?
  3. Sean

    General thread on functional disorders in Denmark

    Damning with faint praise, indeed.
  4. Sean

    Loss of CRH neurons and other neural changes in ME/CFS autopsy study - University of Amsterdam

    For a start, the unremarkable fact of the additional burdens of normal ageing on top of serious chronic and very badly managed disease need to be factored in. If you are already barely functional it does not take much extra burden to crash the whole show. Indeed. The lack of decent...
  5. Sean

    Interventions that manipulate how patients report symptoms as a separate form of bias

    I remain deeply and increasingly skeptical of the whole CBT show.
  6. Sean

    Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum, 2026, Ryback et al

    As disappointing as any negative result is for a previously promising preliminary finding, nonetheless it is far better to know it is not holding up so efforts and funding can be better allocated to other possibilities. Onward ho!
  7. Sean

    Invisible Illness A History, from Hysteria to Long Covid, 2026, Mendenhall (book)

    Yep. Why is he so special and important that he gets such endless uncritical deference and protection? How such a person has been allowed to become so powerful and beyond accountability, indeed lavishly rewarded for his failure and misbehaviour, speaks disturbing volumes about the broader...
  8. Sean

    Multicentre validation of a patient-reported outcome measure for functional movement disorders 2026 Michaelis et al

    Still not seeing the demonstration of content validity. Just more proof of rampant confirmation bias. Same as it ever was.
  9. Sean

    Scottish ME/CFS clinical service provision

    “It’s at a level of the brain you are not in control of” - understanding this is essential for recovery. 'You have no control over it, and here is how to take control over it.' :cautious:
  10. Sean

    2025-2026 Norwegian chronic fatigue guidelines - draft published

    Ah. Thanks. Usual trick, bury it deep and misrepresent the problem and solution anyway. These arseholes really think we are foolish flakes who just need to taken by a firm guiding hand and treated like moronic wayward 5 year olds. Indeed, but worse. I regard this stuff now as straight fraud...
  11. Sean

    2025-2026 Norwegian chronic fatigue guidelines - draft published

    exercise-induced exacerbations (PEM) It is not exercise induced, it is effort induced. These are fundamentally different. The distinction matters because some want to keep the focus on physical exercise and hence the understanding limited to deconditioning type interpretations, not on the...
  12. Sean

    Instruments for measuring fatigue in people with rheumatic and musculoskeletal diseases: a systematic review of measurement properties 2025 Machado+

    I am becoming actively hostile to questionnaires, and now operate on the presumption they are of very limited and uncertain value at best, and typically worse than that. Problematic enough a tool in the hands of honest and diligent researchers with the most honourable intentions, and an open...
  13. Sean

    Instruments for measuring fatigue in people with rheumatic and musculoskeletal diseases: a systematic review of measurement properties 2025 Machado+

    "Fatigue is described as being overwhelming, distressing, extreme, not restored by sleep, multidimensional and part of a vicious circle where fatigue feeds and fosters itself.11–13" Ref 12 being Sharpe M. Cognitive behavior therapy for chronic fatigue syndrome: efficacy and implications. Am J...
  14. Sean

    Commentary: Initial Strategy for the Future of DSM [Diagnostic and Statistical Manual of Mental Disorders] 2026 Oquendo et al

    Moreover, the addition of transdiagnostic dimensions may aid in mitigating the risk of reification because it makes explicit that there are aspects of psychopathology that transcend diagnostic boundaries and hence categories. Uh-oh. :grumpy:
  15. Sean

    Problems arising for pwME from additional diagnoses of MCAS, hEDS and POTS. Advocacy discussion.

    Because doctors are not scientists. They are high level technicians, which is a very different skill set and mindset. Doctors have to apply existing knowledge. Scientists have to generate the knowledge for the first time. Which means that doctors are not so good at determining and judging the...
  16. Sean

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Yeah, mainly onto patients, and all too often their families as well, particularly in the case of children. :mad:
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