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  1. Sean

    United Kingdom: ME Association news

    Increasingly of that view myself.
  2. Sean

    PEM discussion thread - post-exertional malaise

    Yes, at least sometimes it can be overridden for a bit, but then comes payback time.
  3. Sean

    Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care, 2025, Cupit

    The story on this is straight forward enough: They have been unable to deliver solid evidence of their basic claim by the standards the rest of science is supposed to meet, indeed the standards that they themselves instituted half a century back. So instead of admitting they have nothing, that...
  4. Sean

    News from Germany

    I don't feel reassured by that statement.
  5. Sean

    Patient-Reported Treatment Outcomes in ME/CFS and Long COVID, 2024, Eckey, Davis, Xiao+

    This. Pacing certainly helped with an initial and welcome improvement, but I quickly hit a ceiling that has never gone away. Beyond that it mostly has just helped slow down the rate of deterioration. But it is still a very unsatisfactory outcome overall.
  6. Sean

    Frustrated, but Motivated: Insights from People with ME/CFS, 2025, Rathmann, Jason et al

    In that alone it is a clear improvement on most papers, which more typically document and promote the authors' interpretations and prejudices more than anything else.
  7. Sean

    What Doesn't Kill You [Forthcoming Documentary]

    :thumbup: The rise and rise of the psychosomatic cult is the greatest and cruelest catastrophe in modern medicine. If you can only get one message across in your film it is that patients are not the problem here. It is the medical profession, and broader governance, that have so grotesquely...
  8. Sean

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Relevance Deprivation Syndrome? They ran out of good ideas but can't handle being left behind, so start clinging to something, anything, no matter how ridiculous, just to keep them in the game and feeling important.
  9. Sean

    Chronicity rhetoric in health and welfare systems inhibits patient recovery: a qualitative, ethnographic study of fibromyalgia care, 2025, Cupit

    I think this is our greatest threat, that they manage to so impoverish and discourage biological research that it effectively stops. It is not clear that there is currently a sufficiently robust bio research stream that can withstand this relentless war on technical and ethical standards by the...
  10. Sean

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Into what? A psychodrama morality play? We could start selling badges/hats/coffee mugs/etc that say: I survived the psychosomatic cult.
  11. Sean

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    But I'm a crowd-funded academic... So, you brazenly admit it? Have you no shame? :emoji_upside_down:
  12. Sean

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Not to mention very nasty and highly defamatory.
  13. Sean

    Breathing therapy for patients with medically unexplained physical symptoms and dysfunctional breathing: A pilot and feasibility trial 2025 Karlsen+

    Ironically, for ME/CFS at least, it was Wessely who showed early on that hyperventilation was not a feature of the condition.
  14. Sean

    "The impact of leading questions on ME/CFS research: bias and stigma in study design", 2025, Jason et al

    Yeah, this is not news. Though certainly good, necessary even, to have it specifically looked at in the ME/CFS context.
  15. Sean

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Always playing the underdog, both the victim and hero, despite being neither, is a standard propaganda technique.
  16. Sean

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Not to mention highly defamatory towards [checks notes] anybody who dares question the Great Man, but especially patients.
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