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  1. Sean

    MSD Manual (US): Chronic fatigue syndrome - updated Apr 2020 and Sept. 2021

    For successful management patients need to accept and accommodate their disability, focusing on what they can still do instead of lamenting what they cannot do. [CBT & GET] should be considered for patients who are willing to try them Yes, the problem is entirely with the attitude and beliefs...
  2. Sean

    News from Scandinavia

    Actually, such considerations involving emotional and spiritual elements in healing have been around for many years. But they have been treated as less credible and belonging to so-called alternative medicine. For very good reasons.
  3. Sean

    If you had to guess ME/CFS cause, what'd you say?

    Yeah, I am not convinced either. Of course it is possible, and we should keep an open mind about it, but nothing more at this stage.
  4. Sean

    Dr. Anthony Fauci on Long Covid and ME/CFS

    It will need more than that. There are some who have behaved so atrociously and disreputably, and are clearly hell bent on continuing to do so, that they have forfeited their credibility and authority and must be removed from the entire game. It is more than just for moral accountability alone...
  5. Sean

    Dr. Anthony Fauci on Long Covid and ME/CFS

    Second, make sure you have a very strict and agreed-upon definition of what long COVID constitutes: I am far more concerned about overall methodological quality. I don't think we are at the point where definitions can be improved much more, at this time. The way to better definitions is more...
  6. Sean

    Hypothesis The Potential Role of Ocular and Otolaryngological Mucus Proteins in Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, 2023, Craddock et al

    ...inability to form adequate mucosal layers throughout the body... Might be something to this, given frequent reports of dry eyes and mouth, etc.
  7. Sean

    Review Conceptual foundations of acetylcarnitine supplementation in neuropsychiatric long COVID syndrome: a narrative review, 2024, Helbing

    Second sentence of the abstract: Several typical symptoms of long COVID, such as fatigue, depressive symptoms and cognitive impairment, are also key features of other psychiatric disorders such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and major depressive disorder (MDD)...
  8. Sean

    Ed Yong Articles on Long Covid & ME/CFS

    Thank you, @dave30th & Ed Young. Good to hear Ed covering the biases introduced by the career selection pressures in medicine.
  9. Sean

    Trends in Molecular Medicine - Immune system perturbations in patients with long COVID, Rodrigues, Brodin, 2024

    While the phenomenon is likely quite widespread, I think there is a very good chance that when the underlying mechanisms are finally identified it will turn out to be quite common and explain a lot of health issues currently unexplained or mis-explained. Also a good chance it will be a more...
  10. Sean

    How patient input helped create culturally sensitive multinational instruments assessing post-viral symptoms, 2023, Jason

    Not criticising this particular paper or its authors, but I really wish post-infection was used instead of post-viral.
  11. Sean

    Opinion Chronic fatigue syndromes: real illnesses that people can recover from, 2023, The Oslo Chronic Fatigue Consortium

    The "motivated' bit is a red flag too. I have no doubt they are dedicated and motivated. Just not to serving the interests of patients.
  12. Sean

    Post-Exertional Malaise - a discussion including defining and measuring PEM

    What @Trish said. For me PEM is the increase in overall symptom expression/intensity, highly disproportionate to the preceding effort (i.e. non-linear), with a major delayed component (≈ 12-36 hours). I have learned, to some degree, how to avoid provoking it any more than necessary, but at a...
  13. Sean

    Increased risk of functional neurological disorders following SARS-CoV-2 vaccination 2023 Pilotto et al

    Increased risk of a FND diagnosis after [checks notes] anything and everything.
  14. Sean

    Mirror: Tory minister demands comedian Ricky Gervais apologises for branding ME sufferers 'lazy' in offensive joke

    I agree that no subject should be off-limits to comedy. But how it is done is where the limits kick in.
  15. Sean

    New Alcohol Sensitivity in Patients With Post-acute Sequelae of SARS-CoV-2 PASC: A Case Series, 2023, Eastin, Bonila et al.

    Worth noting that beverage alcohol contains a lot more compounds than just ethanol and water (up to several hundred, IIRC), and some of those (e.g. ethyl acetate) contribute disproportionately more to the after effects than the ethanol. So it is possible that we are not reacting to the ethanol...
  16. Sean

    New Alcohol Sensitivity in Patients With Post-acute Sequelae of SARS-CoV-2 PASC: A Case Series, 2023, Eastin, Bonila et al.

    @Milo Earliest I can find with a quick search are Sharpe 1992, and Wessely 2004.
  17. Sean

    New Alcohol Sensitivity in Patients With Post-acute Sequelae of SARS-CoV-2 PASC: A Case Series, 2023, Eastin, Bonila et al.

    Another unusual symptom in common with ME. Alcohol reactions and sensitivity are not well characterized in the literature as it relates to post-viral illness. They have been long reported in the ME literature.
  18. Sean

    Trial Report Cost-Effectiveness of Online CBT for Children with CFS/ME Compared to Online Activity Management: FITNET-NHS Trial Findings, 2023, Crawley

    Long-standing, and very hard earned. In medical science those standards are written in patients' blood.
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