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  1. Sean

    Preprint Indistinguishable mitochondrial phenotypes after exposure of healthy myoblasts to myalgic encephalomyelitis or control serum, 2025, Ryback et al

    Doesn't matter if they found something or not. What matters is if they got the correct answer. A robust negative result is just as valuable and valid as a robust positive result. We do not want to waste time and resources pursuing false leads.
  2. Sean

    News from The Netherlands

    Their goal was to “take critical voices seriously and eliminate misunderstandings about CBT.” Yeah, that is the problem, our misunderstandings. It is all our fault. I do not believe for a second these people are that stupid or ignorant. They do not have that excuse. They know what they are doing.
  3. Sean

    The ELAROS NHS digital system for patient/clinician digital sharing questionnaire data, includes Yorkshire Rehab. Scale and Open-OH app

    Do any other conditions have this onerous drivel shoved down their throats? Or are we special?
  4. Sean

    Preprint Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest, 2025, Charlton, Wust et al

    It is a very interesting comment. :nerd: I think so. Though could also be just an incidental effect of the disease process.
  5. Sean

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Having direct active links in citations, or even just a doi, can save considerable time & effort. Being able to find something with a bit of hunting is okay for one or two things. But that extra time and work adds up fast when checking a whole lot in one sitting. I definitely get this. One of...
  6. Sean

    How pandemics reshape our brain: Common links and targets between long-haul COVID-19, ME/CFS, oxidative stress, and neurodegeneration, 2025, Herman

    with cellular oxidative stress as a predominant feature. News to me. Is this confirmed?
  7. Sean

    News from the USA, United States of America

    Exactly. Plus the stigma and prejudice that goes with it, especially when your disability is invisible to others. There are no secondary benefits. There are only primary and secondary losses.
  8. Sean

    I'm able to exercise but am still disabled

    No way I could do a 40km bike ride, or any comparable physical activity, without very serious payback, and the real risk of a permanent worsening of my health status.
  9. Sean

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Grossly defamatory, even. Increasingly my view that Garner is likely to be a self-limiting problem. He is trashing his reputation far faster and more comprehensively that his critics could ever do. He has become an evangelical fanatic, which rarely ends well.
  10. Sean

    Using Heart rate monitoring to help with pacing.

    One of my biggest wishes for ME/CFS is for a good in vitro test for PEM, using a tissue or fluid sample. That would do the job nicely. Then they could research it to their heart's content, without any risk to the patient. Also raises the possibility of a cheap at home test so that patients...
  11. Sean

    [Poster] Changes in blood metabolic profile during repeated cardiopulmonary exercise testing (2xCPET) in ME/CFS patients, 2025, Chapola

    Samples were taken at rest, peak exercise intensity, and 15 and 60 minutes post-exercise. Would like to have seen a 3rd set of samples taken 24 hours after the 2nd CPET test (without doing a 3rd test). Otherwise it looks interesting.
  12. Sean

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Recovery Norway is full of people who have recovered from mind-body retraining packages and cognitive approaches. There are recovery stories everywhere So why are they not showing up in treatment studies, including those done by your fellow travellers (the studies they could be bothered to make...
  13. Sean

    The relationship between cannabis and cardiovascular disease: clearing the haze 2025 Chandy et al

    I don't think that is a fair characterisation of the views on cannabis.
  14. Sean

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Thank you (and to your co-authors) for taking this issue seriously. It isn't just us being hyper-sensitive snowflakes. Unfortunately, as we have learned the hard way, the language and politics of it all matter very much and have to be taken into account. We have all seen and experienced many...
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