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  1. Sean

    A patient perspective on enduring symptoms – the unmet need, 2025, Cheston

    They actually have contradictory views. When patient self-report supports their interpretation it should be accepted without question, even if any objective evidence says the opposite. When it doesn't [support their interpretation] it should be ignored, or used as evidence that patient...
  2. Sean

    Preprint Connecting the Dots Between ME/CFS, HSD/hEDS, Abnormal Fascia, Lymphatic and Glymphatic System Impairment, and Craniocervical Instability, 2025, Lubel

    The number of hypotheses, and the degree and intensity of debate, about any issue are inverse indexes of how much knowledge and understanding we actually have. In medicine specifically, I would also add the frequency that it is labelled complex and multi-factorial, best explained by a...
  3. Sean

    BOLD signal changes can oppose oxygen metabolism across the human cortex, 2025, Epp et al.

    According to the findings, there is no generally valid coupling between the oxygen content measured by MRI and neuronal activity. Interesting. :nerd:
  4. Sean

    Opinion: Why I support the use of ME/CFS as opposed to any other name

    I agree with Andy. ME/CFS is the best compromise from a list of bad choices, and I see little benefit, and considerable risks, in trying to get it renamed until we have a better handle on what is going on under the hood.
  5. Sean

    Works of fiction where characters have ME/CFS

    Liked, but didn't reveal the spoilers as have not seen the film yet.
  6. Sean

    News from Canada

    Be interesting to see a more granular breakdown of the 45-64 age group, maybe into 5 year intervals, to see if the rate goes up with age.
  7. Sean

    Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

    Similar story here. Got sick one day in late Oct 1984, struggled hard with it, not helped by the medical profession's 'offerings', my life just vanishing before my eyes in a particularly opaque and horrible way. Eventually reached crisis point as nothing was working and my options had run out...
  8. Sean

    Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

    That is probably the most significant change. Partly for support and solidarity, and partly because it has made it much harder for the authorities to pull the wool over patients' eyes and fob us off when we can directly access the medical literature and see for ourselves what the real state of...
  9. Sean

    Helping nurses prepare for uncertainty in clinical practice, 2025, MAY

    No consideration of whether it appropriate or not? Or is it just CBT for all?
  10. Sean

    Improving collaborative care networks for functional disorders and persistent somatic symptoms: a participatory action research study... 2025 Mamo+

    Don't you think you should have thought of that and adequately implemented it from day one of your grand FND project? This is what happens when you let clowns with Big Important Ideas™ play with people's lives.
  11. Sean

    News from Canada

    This may or may not be a bad thing, depending on what the clinic was offering. Patients need to be careful about what they wish for. If we are going to demand dedicated clinics then we need to be clear about what they can and cannot offer us. At this stage I think they have little to offer us...
  12. Sean

    Long COVID Recovery and Exercise Adherence: 32-Month Study, 2025, Rolo-Duarte

    How did they measure adherence? Indeed. They have not collected any data that reveals causation, and especially direction of any causation. But the whole point of doing science is to determine causal relationships. If a study cannot contribute to that then it is not scientific in any...
  13. Sean

    Which interventions are acceptable to patients for managing fatigue in long-term conditions?: A qualitative evidence synthesis,2025,Booth/Deary/Burton

    Because that is how snake oil merchants operate. Seriously. It is far worse than that: They don't want to ask them, and are actively working to prevent them being asked and honestly answered.
  14. Sean

    The National Archive Document BN141/1: The DWP file

    Thank you, @Valerie Eliot Smith.
  15. Sean

    The National Archive Document BN141/1: The DWP file

    Is that available in downloadable PDF form?
  16. Sean

    Long COVID Recovery and Exercise Adherence: 32-Month Study, 2025, Rolo-Duarte

    For which patients? No stratification. No mention of a control group. Retrospective. Impossible to determine causation. Patients who were going to improve/recover naturally probably did so anyway. If anything what they measured was the natural recovery rate, independent of exercise.
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