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  1. Hoopoe

    Thoughts on the "adrenaline effect"?

    I know what you mean but have some doubts that this has much to do with adrenaline. To me it feels like the body is in a sort of "energy saving and chronic illness" mode characterized by fatigue and increased pain sensitivity. It's meant to limit function and reduce overall activity levels, not...
  2. Hoopoe

    When should I stop searching for an objective alternative diagnosis to ME/CFS?

    I've read that some metabolic disorders respond well to treatment if you can find out what the exact problem is. For example, I carry a mutation that can cause phytanic acid storage disease in people who have such mutations in both copies of the gene. It can respond well to a simple diet change...
  3. Hoopoe

    When should I stop searching for an objective alternative diagnosis to ME/CFS?

    Why I've started to doubt PEM is only found in ME/CFS: I've now heard of several cases where a person with mitochondrial or metabolic disease had been diagnosed with ME/CFS. In at least 2 of these cases the person seemed to have PEM. In two other cases I'm not sure but misdiagnosis due to lack...
  4. Hoopoe

    When should I stop searching for an objective alternative diagnosis to ME/CFS?

    I'm not sure if I should continue to try and find some other disease that could explain my symptoms. If I have ME/CFS then it doesn't make much sense but I can't be certain that I have ME/CFS because there's no reliable diagnostic test. I've also started to doubt that PEM is a reliable indicator...
  5. Hoopoe

    Evaluating case diagnostic criteria for ME/CFS: toward an empirical case definition, 2022, Conroy, Jason et al

    I only count myself as being in PEM when there is noticable worsening of one day from the next, and on the previous days I did more than usual. Or if symptoms start during or shortly after exertion and persist for days but that is rare because it requires more overexertion. That means when I...
  6. Hoopoe

    Evaluating case diagnostic criteria for ME/CFS: toward an empirical case definition, 2022, Conroy, Jason et al

    I'm no longer convinced that PEM can be safely assumed to be unique to ME/CFS, or that clinicians can distinguish PEM from tiredness after exertion. Exclusionary conditions seem like a bad idea however. Having ME/CFS doesn't make you immune to other illnesses, some of which might be easier to...
  7. Hoopoe

    UK Dr Anna Chellamuthu, GP and Lightning Process practitioner, and her article in a GP journal

    Does anyone wonder whether these testimonials are made up? They don't sound authentic to me because they contain almost no details. A real patient would have a lot more to say about various aspects of illness and recovery. I could say more but I don't want to help these charlatans appear more...
  8. Hoopoe

    UK Dr Anna Chellamuthu, GP and Lightning Process practitioner, and her article in a GP journal

    Her website is a typical LP practitioner site with slick marketing https://www.dr-anna.co.uk
  9. Hoopoe

    Preprint Medrix: Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in ME/CFS - Helliwell, Tate et al -2022

    I would like to see a cerebral blood flow study during a relapse compared to a non-relapse state.
  10. Hoopoe

    Use of selection criteria in ME/CFS research

    The released PACE dataset showed that dropout were much more likely in a group of entries at the beginning. The intepretation of this depends on the ordering of the entries. If they are ordered by date of entry into the trial, it could mean that therapy was silently modified mid-trial to reduce...
  11. Hoopoe

    Preprint Medrix: Dynamic Epigenetic Changes during a Relapse and Recovery Cycle in ME/CFS - Helliwell, Tate et al -2022

    I often wonder what could be found with in-depth lab testing during my prolonged crashes. They make me feel very unwell and can last weeks or months. I once had a test done by chance during a crash with predominant gastrointestinal symptoms and it found fecal zonulin at levels 4 times the...
  12. Hoopoe

    Use of selection criteria in ME/CFS research

    The reason PACE failed to show an improvement with exercise therapy is probably precisely because they recruited a large enough number of ME/CFS patients. If I'm not mistaken, a lot of their usual patients that they label as having CFS comes from psychiatry clinics. Or at least it used to be the...
  13. Hoopoe

    Differential Metabolites and Metabolic Pathways Involved in Aerobic Exercise Improvement of Chronic Fatigue Symptoms in Adolescents..., 2022, Zhao

    I often and easily hit the maximum heart rate recommended by the authors just walking or even standing up. I go outside and walk on most days, as able on that day. Then again I'm not an adolescent anymore. Right now my heart rate is 87 while sitting. It probably went up because I've eaten...
  14. Hoopoe

    Public Why Is Psychiatry So Defensive About Criticism? By Philip Hickey, PhD

    To me it seems that psychiatry is attempting to treat poorly understood conditions and it shouldn't come as surprise that this can easily go wrong. On the other hand, is it worse than making no attempt to treat patients? Generally it's probably doing more good than harm. For someone that was...
  15. Hoopoe

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Exactly. The first paper on CBT/GET presented it as solution. There was no doubt in the author's minds as to what the problem was and what solution it required. Judging by his other published papers, at the time Wessely also had an interest in mass hysteria and that is presumably how he saw...
  16. Hoopoe

    EDS, hypermobility, and the link, if any, to ME/CFS

    They also often have a disabling multi symptom syndrome. If "hEDS" is a bad narrative for what is going on, then what is a good narrative?
  17. Hoopoe

    EDS, hypermobility, and the link, if any, to ME/CFS

    These patients say that their joints often get out of position even while doing ordinary things. That seems hard to reconcile with "in their head".
  18. Hoopoe

    (Coming) thesis: Tarjei Tørre Asprusten "Diagnosis of Chronic Fatigue Syndrome in Adolescents" - 2022

    Does the "lack of differences" also hold when PEM is objectively measured? The IOM report concluded that PEM is the symptom that best helps distinguishing ME/CFS from other conditions. It would be interesting to compare the reasoning used by the IOM report and that of the author. I find it...
  19. Hoopoe

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

    In my opinion it's fairly clear that rights are not won by behaving nicely. You have to fight.
  20. Hoopoe

    BPS attempts at psychologizing Long Covid

    How is this different from "We have the impression that the symptoms are triggered by negative karma from past lives. This can also be treated very well. But the willingness to do so is less pronounced because people don't accept that they have behaved badly in their past lives"? The only...
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