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  1. Sean

    Have you experienced being asymptomatic when not in PEM?

    No. Have not had a single symptom-free day since the day I got sick, more than 40 years ago.
  2. Sean

    Crowdfunding for David Tuller during April 2026

    First of two done. :thumbup:
  3. Sean

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

    Gaffney is one of those people who is so consistently wrong that his views can be safely ignored without any further justification.
  4. Sean

    Norway: 2026 NAV court case over disability benefits

    Even granting them 'theoretical' status is being very generous, given how consistently they fail robust testing. Wilfully ignorant, self-serving grasping at non-existent straws is close to the truth. Indeed. It is rock solid proof that they don't care about patient welfare at all, and are...
  5. Sean

    Recovery from chronic fatigue syndrome: a reflexive thematic analysis of experiences of people before, during and after treatment, 2025, Chalder+

    Well, yes. But it is just too easy to sneak in self-serving unscientific changes via post-hoc modifications, and once they are done they become the received wisdom and extremely difficult to undo, as we saw all too clearly with PACE, the very real consequences of which are still with us today...
  6. Sean

    Recovery from chronic fatigue syndrome: a reflexive thematic analysis of experiences of people before, during and after treatment, 2025, Chalder+

    :thumbup: Suggested modifications: - objective and/or adequately controlled (i.e. blinded) subjective outcomes - final outcome assessment ≥ 6 months after the last treatment session, preferably ≥ 12 months - registered in advance, with no deviation from the registered protocol for the initial...
  7. Sean

    Recovery from chronic fatigue syndrome: a reflexive thematic analysis of experiences of people before, during and after treatment, 2025, Chalder+

    I would add a 4th concept: the claims made by the authors are not only unsupported by the data reported in their study, and the other studies they cite, they actively contradict it.
  8. Sean

    Review Physiotherapy management of long COVID in adults 2026 Nygren-Bonnier and Holland

    Rehabilitation is central to the management of long COVID. Examined interventions include exercise-based rehabilitation, aerobic and resistance exercise, respiratory muscle training, energy saving techniques/pacing and multimodal approaches. I see nothing in there about the results from those...
  9. Sean

    Elevated blood viscosity is associated with dysautonomia in long COVID symptoms, 2026, Tamariz et al

    Nothing to apologise for. This is what needs to be done with all studies and claims. Torn apart and all the flaws and limitations exposed. It is a core essential part of science, and something to proud of being good at it, which you are. :thumbup:
  10. Sean

    Miscellaneous Research Thread

    While the analytics component is a critical part of overall methodology, and worthy of review on its own, did they also do a separate study on the non-analytical component, the part that constitutes the primary data generation/collection phase? No good checking how robust the analysis of the...
  11. Sean

    What degree of change do we want from an effective treatment for ME/CFS?

    A substantial reduction in pain, brain fog, PEM, and overall increase in the quantity and quality of activity capacity. I will also accept a full cure, a grovelling apology from the medical profession, the guilty being held to prompt formal public account, and a couple of million dollars to...
  12. Sean

    The effectiveness of specialist cognitive behavioural therapy for functional neurological disorder: a service evaluation 2026 White, Pick and Chalder

    Yet another piece of evidence that all they are doing is modifying patients' questionnaire response behaviour, independent of any practical meaningful benefit.
  13. Sean

    Aberrant recruitment of the striatum & insula are associated with recalling and suppressing fatigue- and anger-related memories in CFS/ME, 2026, Rimes

    We are whatever they need us to be for the purposes of the current study. Any and all results, or lack of them, confirm the psycho-behavioural model. I wish that was a joke.
  14. Sean

    Testing a Personalised Dysautonomia Management Protocol in Patients with Orthostatic Intolerance and a Diagnosis of ME/CFS or Long COVID, 2026, Barr

    salt intake to 10 g That is more than twice the generally recommended maximum level of daily sodium intake, and more like 5-10 times the optimal. So it delivers no meaningful benefit, and seriously increases your risk for stroke and kidney disease. Nah. I will pass on this one. :thumbsdown:
  15. Sean

    Norway: 2026 NAV court case over disability benefits

    we can't rule out spontaneous recovery And you can't rule it in either. By its very definition you can't predict it, cause it, or rely on it. It has no role at all in future planning for an individual case. THAT IS WHAT SPONTANEOUS MEANS!
  16. Sean

    Psychological interventions for individuals with long COVID: a systematic review and meta-analysis, 2026, Garriga-Salvó et al

    And which specifically encourages patients to view their symptoms in a different manner, and hence bias the reporting of outcomes. It is blatant systematic biasing of methodology from the start.
  17. Sean

    News from Canada

    :muted:
  18. Sean

    News from The Netherlands

    And worse.
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