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  1. Sean

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

    Acceptable interventions provide coherent explanations, What about accurate explanations? Does that have any relevance and importance? without imposing additional burden. Have you ever considered not burdening us with endless psycho-moral speculation, and just generally getting off our backs...
  2. Sean

    News from the USA, United States of America

    "We need less food. More exercise" Better quality food would help a lot too, (along with built environments that encourage more exercise, better bike paths, for example). Simply swapping high fructose corn sugar for conventional sucrose, which they have recently done, is not a significant...
  3. Sean

    Opinion (BMJ) Health information in age of social media and influence, 2025, Purnat & Scales

    can empower members through support and validation, What about through also offering a better understanding of the real state of research findings and clinical benefits (or lack of them)? However, they also risk amplifying unverified claims or deepening exclusion from mainstream care. What...
  4. Sean

    Somatic arousal and sleepiness/fatigue among patients with sleep-disordered breathing, 2016, Gold et al.

    You can in psychosomatics, they do it all the time. Construct validity and relevance are not important. Just ask them.
  5. Sean

    Would you say that you suffer from debilitating fatigue or extreme fatigue?

    And by implication those who tried to point out that psychologising it all and treating with CBT was highly inappropriate. Hard to find any kind words to describe the likes of Garner and Miller. I can't even grant them merely 'well-meaning' anymore. There are simply no excuses whatsoever for...
  6. Sean

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

    It is a mixed bag. But I wouldn't say it is worse, far as I can tell. Should say that I am now quite removed from the day-to-day coalface battles here, as 1) I am a very long term patient and disability pensioner, and 2) am also nearing the age where I qualify for the old age pension. In other...
  7. Sean

    Mapping the genetic landscape across 14 psychiatric disorders, 2025, Grotzinger et al.

    Short version: Relying on superficial symptom count based diagnoses is not scientific nor helpful to patients. As some, including at the highest level of the profession, have been pointing out for a long time.
  8. Sean

    Rehabilitation providers’ experiences with long COVID care in Canada: a qualitative study, 2025, Leighton

    Instructions for folding shirts: 1. Don't fold shirt. 2. If t-shirt, then throw into drawer. 3. If collared, then throw over bedhead. End. ---------------------- There are some actions/tasks which require you to do (more-or-less) the whole thing in one go, especially if you want to...
  9. Sean

    Psychological factors: the defining features of quality of life in disorders of gut-brain interaction - a comparative exploratory analysis 2025 Groen+

    What they said : Although causality between psychological factors and HrQoL cannot be ascertained, our findings underscore the importance of holistic DGBI-management that extends beyond symptom-control to encompass the full spectrum of patient-experience. What they should have said: As...
  10. Sean

    Safety and Physical Outcomes of a Novel Australian Multidisciplinary Long COVID Clinic That Incorporates Exercise, 2025, Buettikofer+

    This is consistent with emerging international evidence, with a recent systematic review of 8 randomised controlled trials [15] finding that exercise therapy in Long COVID populations is safe and not associated with adverse events. Between the appalling dropout rate, and the failure rate to...
  11. Sean

    Hypothesis Hypothesis: A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of ME/CFS and Long COVID, 2025, Jeff Wood, Kaufman et al.

    If I lie on my back with a pillow under my head, after maybe half an hour I get neuralgia (term? the arm equivalent of sciatica) in the left forearm and hand severe enough to prevent sleep, and quickly becoming intolerable if not relieved. Take away the pillow, or change to lying on my side...
  12. Sean

    The ME Association Clinical Assessment Toolkit (ME-CAT) and app (autonom-e)

    i. the development and psychometric evaluation of the toolkit assessments, Phase I successfully co-produced psychometrically robust tools with patients and clinicians. There it is. This has nothing to do with any benefit for us. By funding this phase, this enables the MEA-CAT to move from...
  13. Sean

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

    Rutter wrote some nice short choir pieces. I wish him the best.
  14. Sean

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

    Far as I'm concerned it ticks all the boxes. It's a cult by any other name, and a particularly insidious and cruel one. Yep.
  15. Sean

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

    It is a deliberate childish snub. A petty transgressive FU. They are basically just making it up as they go. It has been their whole act all along. Yes. Such bald-faced propaganda and dishonesty has to be called out. Including the journal's peer-reviewers and editors for letting it through...
  16. Sean

    Upper Airway Resistance Syndrome (UARS): a common underlying cause for all "chronic complex illnesses"? (ME/CFS, fibro, GWI, etc.)

    I was diagnosed with sleep apnea a few years back, via a sleep study. It was due to structural blockage in the nasal cavity. Had surgery for it, and a subsequent sleep study showed it fixed the issue, by that standard. But it made no difference to the ME/CFS/FM symptoms. Nor, frankly, that much...
  17. Sean

    Fibromyalgia in obstructive sleep apnea-hypopnea syndrome: a systematic review and meta-analysis, 2024, He et al.

    This. I would also suggest not posting a comment immediately after writing it. Leave it overnight, or for a day or a week, and revisit it before posting.
  18. Sean

    United Kingdom: Sussex & Kent ME/CFS Society News

    Nasty dishonest stuff. :mad: But not surprising.
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