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  1. Sean

    Review Functional neurological disorder, physical activity and exercise: What we know and what we can learn from comorbid disorders 2024 Boylan et al

    It is so blatant, isn't it. We are way past the point where they can claim plausible deniability. They are just compounding the already serious damage to their own reputations.
  2. Sean

    National Autistic Society says media reports on an autism cure study are ‘deeply insulting’

    They seem completely oblivious to the profound damage they are doing to their own reputations. As I have said before, trust is the single most important element of the clinical encounter and relationship. Lose that and it is all over.
  3. Sean

    Machine learning classification of functional neurological disorder using structural brain MRI features 2024 Westlin, Perez et al

    Because nobody with authority over them is calling them out on it. This problem goes way deeper than a handful of rogue players in one small area of medicine.
  4. Sean

    David Tuller Crowdfunding starts May 1st 2024

    I had one too. Was our Dave, far as I can tell. Used a berkeley.edu email address. But he can confirm that. @dave30th
  5. Sean

    Working knowledge, uncertainty and ontological politics: An ethnography of UK long covid clinics, 2024, Greenhalgh et al

    They have gone rogue on methodology and ethics, and become a law unto themselves. And did it in full public view. There has to be an intervention from the rest of science. Medicine is clearly not going to stop them. Whether it chooses not to, or is incapable of it, doesn't matter any more. The...
  6. Sean

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

    Same as safety training. Awareness of the problem is not enough, the system, the structure, the culture, has to be biased heavily in favour of it.
  7. Sean

    A Descriptive Diagnosis or a Causal Explanation? Accuracy of Depictions of Depression on Authoritative Health Organization Websites, 2024, Valtonen+

    It is not known whether this logical error, a form of circular reasoning, can sometimes be mistakenly reinforced by health authorities themselves. Leading professional medical and psychiatric organizations commonly confound depression, a descriptive diagnostic label, with a causal explanation...
  8. Sean

    Determining the societal value of a prospective drug for ME/CFS in Germany, 2024, Afschin Gandjour

    But can be safely assumed to not be insignificant.
  9. Sean

    Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Thank you for doing this, @andrewkq, et al. This one is important to robustly critique. Yep.
  10. Sean

    News from Australia

    Good piece. The fact that it is even being published in a major (in the Australian context) mainstream media outlet is a sign of progress. The fact that it can be regarded as a noteworthy and laudable sign of progress is itself a sign of how low the bar has been set in our media.
  11. Sean

    What research do you want to see? (study ideas)

    For me average peak PEM is probably around 24 hours, ± a few hours. But can certainly go longer if severe. How much of that is decades of learning to identify and manage it, and avoid the worst of it, is another question. I would expect it to be much more variable (and hence more difficult to...
  12. Sean

    Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study, 2024, Royston et al.

    What rehabilitation? Hence, how is education going to take place? They still think it is just a management problem, and they know how to teach us to manage it.
  13. Sean

    Trial Report Blood Flow To The Head Is Reduced in a Patient With Myalgic Encephalomyelitis With Confirmed Post-Exertional Malaise, 2024, Lee

    Which is why we need an in vitro test for PEM, to eliminate the risk for patients. That would be a game changer for research.
  14. Sean

    Infection and chronic disease activate a systemic brain-muscle signaling axis, 2024, Johnson et al

    Even if an infection is cleared quickly, the reduced muscle performance remains many days longer in our experiments. This seems potentially relevant and important.
  15. Sean

    When would a GWAS study help disprove the belief that ME/CFS is psychological

    I think psych is still at the level where their diagnoses and therapies tell us more about what goes on inside their heads than in their patients.
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