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  1. Sean

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

    I am not unsympathetic to patients struggling when confronted with the appalling reality of their situation, including inappropriate diagnoses and explanations and treatments. But believing in and acting on unproven diagnoses and claims about the underlying causal process, and how to treat it...
  2. Sean

    Coping with heat

    That is a big plus. 40C @ 35% humidity is much less of a problem than 35C @ 70% humidity. Still not great, but a lot easier to deal with.
  3. Sean

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    It is sickening to watch what we, and others, warned would happen unfolding as we said it would, while the government and medical authorities remain overwhelmingly in defensive denial.
  4. Sean

    “If I Accomplish Nothing Else but Hope, That Will be Enough”: The Ethics and Morality of Market-Based Hope in Illness Entrepreneurship, 2025, Geiger

    The only hope I want is via realistic robust studies. Anything else is a methodological and ethical cesspit. I regard recovered patients – to the extent they actually exist – as one of the more misleading sources of insight, ideas, and progress. Especially when they are making a buck from their...
  5. Sean

    Do you feel worse, better or the same when you wake compared to when you went to sleep?

    As so often is the case with ME/CFS we run hard into the limits of language. I have had a couple of sleep studies for sleep apnea, before and after nasal surgery. The after results showed conventionally normal sleep. More or less. Which just proves to me that we don't yet know how to measure...
  6. Sean

    Virus-Induced Endothelial Senescence as a Cause and Driving Factor for ME/CFS and Long COVID: Mediated by a Dysfunctional Immune System, 2026, Nunes +

    Would premature endothelial senescence increase risk of cardiovascular events, particularly long-term?
  7. Sean

    On fatigability and rationing as improved terminology over fatigue and pacing

    Not my understanding of it. I take it to mean matching activity levels to current symptom levels. Which may or may not be a steady rate, depending on how stable and predictable symptoms are. For at least many patients, particularly early on when first learning how to apply pacing, they are...
  8. Sean

    Virus-Induced Endothelial Senescence as a Cause and Driving Factor for ME/CFS and Long COVID: Mediated by a Dysfunctional Immune System, 2026, Nunes +

    ABSTRACT, with added spacing. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID are two post-viral diseases, which share many common symptoms and pathophysiological alterations. Yet a mechanistic explanation of disease induction and maintenance is lacking. This hinders...
  9. Sean

    News from Canada

    So, it is in nobody’s interest to accept this as a real condition. Besides patients. And their family. And friends. And community. And the national budget. The bit I don't get in all this idiocy is just how short-sighted burying heads in the sand is. The best, and indeed only way, to solve...
  10. Sean

    Coping with heat

    Indeed. You can always add more layers of clothing or blankets in cold weather (within reason). But you quickly run out of clothes to shed in hot weather. Hence air-conditioners.
  11. Sean

    Protocol Tailored Individual Follow-Ups Versus a One-Day Group Course in Patients With Long COVID Post– COVID-19 Condition: Protocol for [an RCT], 2026,Wilson+

    Cherry picking, both the 'evidence' and the interpretation, par excellence. Until they start getting held to adequate account for it they will continue right with this appalling dishonesty and expanding their empire. No sign of that accountability happening yet. To the contrary. They are being...
  12. Sean

    Preprint Individualized online exercise therapy aids recovery in pediatric long-COVID - Findings from an exploratory RCT, 2025, Goretzki

    The lack of a no-intervention control group restricts causal attribution. It does not allow it at all. Yes, yes, and yes.
  13. Sean

    Review Effects of Positive Psychology Interventions on Inflammatory Biomarkers and Cortisol: A Systematic review.... - Eilertsen et al, 2025

    Did they control for financial & housing stress, and being subject to endless arbitrary psycho-drama and morality play soaked impositions, for example, and try relieving that? Start with the basics first. This.
  14. Sean

    UK House of Lords/ House of Commons - relevant people and questions

    Yep. Just psych-washing.
  15. Sean

    Clinical efficacy of exercise in the treatment of post-COVID-19 syndrome: a systematic review and network meta-analysis, 2025, Du et al.

    What about selection criteria? In particular, are they differentiating properly for PEM? I suspect that failure to do that is the main means by which these LC exercise studies are getting away with this stuff.
  16. Sean

    Assessing DSM-5 criteria of somatic symptom disorder in medically hospitalized inpatients: A cross-sectional analysis 2026 Schaefert et al

    When contextualized within prior research, our SSD estimates appear plausible. The methodological circle jerk continues right on, unrestrained by reality.
  17. Sean

    Estimated Burden of COVID-19 Illnesses, Medical Visits, Hospitalizations, and Deaths in the US From October 2022 to September 2024, 2026, Koumans+

    underscoring the ongoing importance of prevention measures. Good luck with that in current socio-political and medical climate.
  18. Sean

    United Kingdom: BACME Guidelines for Severe ME, 2019 and 2024 update

    there is no clear evidence base So, once again, they are brazenly admitting they got nothing, besides their nakedly self-serving clinical 'feels', yet are continuing to expand their empire anyway? Can somebody please explain how this is not straight fraud and corruption. And very very cruel to...
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