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  1. Sean

    A thread on what people with ME/CFS need in the way of service

    Looks good to me. Thanks to all who contributed. :thumbup: One comment, and one suggested minor rewrite: Simple advice on judging activity limits based on personal experience is all that is justified. This is the core of activity advice. Any activity. Explain to patients the basic concept of...
  2. Sean

    Dr. Binita Kane - United Kingdom

    'A very very detailed approach to pacing is super super important to recovery'. :grumpy: :grumpy: :grumpy:
  3. Sean

    Identifying post-exertional malaise subtypes: Differentiating physical and mental PEM manifestations, 2026, Tuzzolino et al

    Looks to me like a case of OFNDS (Over Fitting Non-robust Data Syndrome, pronounced 'offends').
  4. Sean

    News from Scandinavia

    At one center (Center for Functional Disorders), 41 out of 44 patients with an ME diagnosis have been recoded as functional disorders. This is so blatantly dishonest, corrupt, and cruel.
  5. Sean

    EU Horizon funding - Prof. Simon Carding, €7.5 million

    Good to see substantial funding for biomed work. Well done. :thumbup: How productively it is spent remains to be seen.
  6. Sean

    ICD-10 Diagnoses prior to ME/CFS diagnosis in children and young people suggest potential early diagnostic indicators, 2026, Wirth

    Good evidence for misdiagnosis and psych bias. Plus possibly some kind of a prodromal phase, at least for some patients.
  7. Sean

    Long-term conditions and symptom-based disorders – A community perspective 2026 Barker

    Call to arms. Cult must feeling a bit threatened. Wagons need circling ever tighter. Sacred texts need another round of scholarly incantation to reinvigorate the brethren's commitment to the cause.
  8. Sean

    Systematic Examination of Gene Expression and Proteomic Evidence Across Tissues Supports the Role of Mitochondrial Dysregulation in ME/CFS, 2026

    It remains my view that the vast majority, perhaps even all, of everything we currently 'know' about ME/CFS is just the downstream secondary and typically contingent consequences of the as yet unidentified primary underlying pathology. All of what we are seeing so far is just the normal...
  9. Sean

    A biopsychosocial perspective on endometriosis: the importance of psychological inflexibility, 2026, Åkerblom et al.

    Yep. This shit is now firmly entrenched in all of medicine, and doing massive harm. It is, incidentally, also destroying medicine's credibility on a massive scale. But they are in complete denial of it. More than a little morality play judgement in it too. Mostly just a giant excuse...
  10. Sean

    Well-known, famous people with ME/CFS (public thread)

    Silicon Valley is an insular hotbed of hivemind tech genius-idiots, and a stark example of why technocracy is a bad idea.
  11. Sean

    The lack of recognition of ME/CFS as a biological disease in healthcare settings

    Patients being 'overachievers' pre-onset was yet another psycho-behavioural trope about us for a while. Some still believe it. EDIT: Snap!
  12. Sean

    Functional Neurologic Symptoms in Multiple Sclerosis: Estimated Prevalence and Associated Comorbidities 2026 Collins, Perez et al

    characterized by motor, sensory, or cognitive difficulties that show internal inconsistency and cannot be explained by structural nervous system damage. Because structural nervous system damage is the only possible physiopathological explanation. There are no other possible physiopathologies...
  13. Sean

    Psychiatric and psychotherapeutic recommendations for long/post-COVID and ME/CFS: a narrative review of international guidelines 2026 Kaya et al

    Two steps forward, one step back. They are slowly coming around, but it is going to be a tortuous, prolonged, and probably only ever partial admission and acceptance on their part.
  14. Sean

    An Open Letter to BACME re ME/CFS Guide to Therapy 2025

    Deliberately so. They are attempting to claim all medical conditions as their turf under the guise of their 'transdiagnostic' scam. It is nothing more than a massive brazen power grab, with no justification at all, and massive costs to patients and broader society. I curse the day that ME/CFS...
  15. Sean

    Australia: $4.7 million for UNSW researchers to investigate long COVID

    No argument. My point is simply that even when they ostensibly report a result they can't get it better than marginal, and not consistently, even if that result is legit. Legit or not, they have nothing of substance.
  16. Sean

    Australia: $4.7 million for UNSW researchers to investigate long COVID

    Or on the rare occasion when they do show a statistically significant objective result it is marginal and of little real world benefit. e.g. PACE for the 6WMT in the GET arm.
  17. Sean

    Cortisol levels in ME/CFS

    And not just hormones either, I will bet. Homeostasis is certainly a thing, but it is a dynamic equilibrium on at least many measures (e.g. blood pressure). When extended real-time collection of what are currently single point data can be done for days-months can be done then a whole new set...
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