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  1. Hoopoe

    Ed Yong Articles on Long Covid & ME/CFS

    Ordinary people can just keep going for hours or most of the day, with little impairment. If they become fatigued it's not a major problem and they can recover easily.
  2. Hoopoe

    Ed Yong Articles on Long Covid & ME/CFS

    I had similar thoughts. The misunderstanding seems to work like this: The exertion intolerance and PEM are ignored or misrepresented as fatigue. The fatigue is misrepresented as chronic fatigue that does not change much. It is then assumed that the way a patient looks at any given moment is...
  3. Hoopoe

    Dysregulated Provision of Oxidisable Substrates to the Mitochondria in ME/CFS Lymphoblasts, 2021, Missailidis et al

    My muscle biopsy showed some degree of mitochondrial dysfunction, but not severe enough to count as proper mitochondrial myopathy.
  4. Hoopoe

    Cochrane Exercise Review Withdrawn - Individual Patient Data

    Why are they doing IPD analysis then? It sounds like IPD would make it easier to obtain statistically significant positive results. But didn't the previous review already obtain them? Maybe they're hoping to get positive results on wider range of outcomes? Obviously it doesn't do anything to...
  5. Hoopoe

    Cochrane Exercise Review Withdrawn - Individual Patient Data

    How does an IPD meta analysis work? Does it focus on the probably few patients with good results and claim the improvement can be attributed to the intervention?
  6. Hoopoe

    USA: “Movie About M.E." and "Banner for Awareness" (formerly "One Name Campaign")

    Some parts read like the intent is to find a name for a category of chronic illnesses that are triggered by infections. Other parts read like the idea is to replace the current names and diagnostic entities with a single new one. At the very least the whole thing can be criticized for lack of...
  7. Hoopoe

    Consequences of sarcolemma fatigue on maximal muscle strength production in patients with ME/CFS, 2023, Retornaz et al.

    Any comment @Jonathan Edwards? Am I the only one who thinks this is really interesting? It seems that this might be a useful diagnostic test that also helps get us closer to understand the problem. It also aligns with the old description of PEM as postexertional muscle weakness. Why I think...
  8. Hoopoe

    USA: “Movie About M.E." and "Banner for Awareness" (formerly "One Name Campaign")

    I don't know. I'm not defending their vision, in case it was not clear. I'm saying that infection-associated chronic illness is a useful term in some contexts that does not require changing any names. Trying to invent a unifying name and diagnostic label to REPLACE what is currently ME/CFs, long...
  9. Hoopoe

    USA: “Movie About M.E." and "Banner for Awareness" (formerly "One Name Campaign")

    infection-associated chronic illness would refer only to the infectious trigger cases. I can see why researchers need a name for "unexplained chronic illnesses that can be traced back to an infection and overlap significantly with each other independently of the infectious agent".
  10. Hoopoe

    USA: “Movie About M.E." and "Banner for Awareness" (formerly "One Name Campaign")

    I agree this looks incompetent. I see nothing wrong with using the term infection-associated chronic illness to refer to this group of illnesses. The NASEM has already used it in a professional setting. We do need such a term to refer to these illnesses as a group. But is the intent to create a...
  11. Hoopoe

    Consequences of sarcolemma fatigue on maximal muscle strength production in patients with ME/CFS, 2023, Retornaz et al.

    The bigger picture of how the brain controls muscle contraction. The nerve cell's axons connect to a structure called the neuromuscular junction, which transmits the signals to the sarcolemma, which is excitable and can propagate it across the cell.
  12. Hoopoe

    Consequences of sarcolemma fatigue on maximal muscle strength production in patients with ME/CFS, 2023, Retornaz et al.

    The sarcolemma is the muscle cell's plasma membrane. While cell membrane covers the entire components of a cell, plasma membrane covers only the cell's organelles. Some main differences between the two are the fact that the plasma membrane encloses the organelles, whereas the cell membrane...
  13. Hoopoe

    Cochrane Exercise Review Withdrawn - Individual Patient Data

    An illness definition based on a single nonspecific symptom cannot be taken seriously. It should be obvious to anyone that it's meaningless. The people behind this attempt to revive the Oxford criteria appear to intend using ME/CFS to give some credibility to this. Even from a language point of...
  14. Hoopoe

    Functional disorders are probably associated with psychosocial stress because they're unexplained

    Being sick with an illness that is difficult or even devastating is not understood by society, and therefore often misunderstood as some form of bad behavior or character flaw does not have treatments has uncertain prognosis with little prospects of improvement in the future will cause...
  15. Hoopoe

    Inspiring stories from people with ME/CFS

    Yes these things are not always mentioned but they play a very big role. Behind my very small success stories with walking/swimming is also the fact that I live with my parents who do most of the household work. If I had to spend more energy on these things I would have much less, if any, left...
  16. Hoopoe

    Cochrane Exercise Review Withdrawn - Individual Patient Data

    Yes. Would it justify a retraction or some sort of warning? It seems like a form of lying. For clarity here's the definition of Oxford CFS criteria: a) A syndrome characterized by fatigue as the principal symptom. b) A syndrome of definite onset that is not lifelong. c) The fatigue is severe...
  17. Hoopoe

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

    Garner has been banned from the Long Covid Apheresis Community facebook group after a community vote.
  18. Hoopoe

    Cochrane Exercise Review Withdrawn - Individual Patient Data

    They write "The forthcoming individual patient data meta-analysis of exercise therapy trials for CFS/ME is a further step in the right direction. The reference is this page https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42018107473
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