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  1. Sean

    A Brief Questionnaire to Assess Post-Exertional Malaise 2018 Cotler, Jason et al

    It is complicated, but I broadly agree with that. Not making a prediction, but I do think there is a fair chance whatever the pathology is that underlies ME it is going to turn out to be relatively common, and explain of a lot of health issues beyond ME. Also that it might be something...
  2. Sean

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    And partly, in the voluntary sense, from very hard earned experience about what happens when we do try to ignore it and push through. Which is what pacing is all about.
  3. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    While not all blame can be spread around equally, with some having to take a bigger share than others, the reality is that these kind of failures are more systemic than individual. And that is much harder to fix than a single rogue individual. Few things anger me more in this whole shitty farce...
  4. Sean

    Investigating the relationship between physical activity and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Franklin, 2021

    That is how they win. They can't meet robust methodological standards, the ones they demand of non-psychosomatic research, so they simply lower them until they can. Et voila! Success! It really is that appallingly bad.
  5. Sean

    Review Long COVID Is Not a Functional Neurologic Disorder 2024 Davenport, Tyson et al

    One of the core features of snake oil medicine is how much it claims to explain, and hence can cure. It is magical thinking, par excellence.
  6. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    "might" ??? How did this not internally trigger a major overhaul by the Trust of their handling of ME/CFS cases? Just sickening. But sadly not in the slightest bit surprising.
  7. Sean

    News from the USA, United States of America

    The admission of not understanding is where understanding begins.
  8. Sean

    Review Long COVID Is Not a Functional Neurologic Disorder 2024 Davenport, Tyson et al

    Or to accept. We are also having to fight with one hand behind our back, in that the standard biomedical arguments have meet to be accepted are much higher than those for psychosomatic arguments. It should not be that way, but in practice it is. That puts you on the same level of knowledge as...
  9. Sean

    Review Long COVID Is Not a Functional Neurologic Disorder 2024 Davenport, Tyson et al

    And boatloads of superficial, ideologically driven, subjective interpretations. I remain unconvinced there is even such a thing as FND, certainly not in any sense that makes it a reliable and useful entity. The concept, definition, and diagnostic process are a hot subjective-soaked...
  10. Sean

    Internal tremors and vibrations in long COVID: a cross-sectional study, 2023, Zhou, Iwasaki et al.

    More basic biomechanical studies please, at all scales, micro to macro. For a disease featuring difficulty in movement it is surprising and more than a little disappointing that so little attention has been paid to how the body is behaving biomechanically, how it is handling both internally...
  11. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Cult thinking never does. That is one of its most required and distinguishing features. What about cognitive activity, including emotional and social interaction?
  12. Sean

    Preprint Management of Nutritional Failure in People with Severe ME/CFS: Review of the Case for Supplementing NICE Guideline NG206, 2024, Edwards (Qeios)

    Nor required in conjunction with feeding. Spreading the blame game. Not entirely clear to me what the distinction is between them. Maybe just call it biological or biophysical. Covers structural and physical.
  13. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    And they have gall to accuse us of being stuck in rigid stereotypical thinking? It is beyond parody. Very good question. It is the perfect excuse mechanism. Nobody can disprove it. Even if a full biological explanation and cure is found they will still claim there is a 'functional overlay', to...
  14. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    The standard shameless sophistry and lying they have been indulging in since forever.
  15. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Big thanks to all those reporting from the proceedings.
  16. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    I wonder at what point do the non-ME specialists at the clinical coalface start turning their critical gaze on the senior BPS school ME 'experts' who have polluted the medical system with all this psycho-drama morality-play nonsense. If they think it is a tough ask to have to confront their...
  17. Sean

    Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al

    Exactly. If it is no big deal then at the very least he should withdraw and rewrite the paper to make it clear to all. I have no delusion that Walitt himself has seen the error of his ways. It is only via shining a light on this crap that anything is being done about it.
  18. Sean

    issue of 'chronic fatigue' without the syndrome being used by media and others and probably pwme

    If even Wikipedia can get that bit right – and to their credit they have for a long time now – then nobody else has the excuse not to.
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