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  1. Hoopoe

    David Systrom, researcher, Brigham and Women's Hospital, USA

    There was also this case report of a woman with ME/CFS who was cured by an intervention to treat narrowing of the transverse sinuses. These are veins at the back of the head. https://pubmed.ncbi.nlm.nih.gov/26623235/
  2. Hoopoe

    Preprint Comparison of T-cell Receptor Diversity of people with Myalgic Encephalomyelitis versus controls, 2023, Dibble, Ponting et al

    It would be difficult to get a severely ill patient in PEM to collaborate with anything that requires leaving the house, or even the stress of strangers coming into their home to take blood and do an examination.
  3. Hoopoe

    The contested zone: interviews with GPs about their beliefs about treatment-resistant depression, 2023, Talbot et al

    Yes. And I bet it's "contested" because the patients often rightfully want to explore other diagnoses and stop believing they have depression.
  4. Hoopoe

    David Systrom, researcher, Brigham and Women's Hospital, USA

    My understanding is that invasive CPET is a highly specialized test that is offered only in few clinics. Presumably very few people even know about its use in ME/CFS and LC although this is difficult to estimate because with LC things are evolving rapidly. I heard from several other patients...
  5. Hoopoe

    David Systrom, researcher, Brigham and Women's Hospital, USA

    What symptoms would suggest preload failure? Can I have it while still being able to do walks of up to 1 hour with only minor PEM? That's a lot less than other people of my age, but more than many patients. I can also swim for a few minutes but cannot seem to increase my endurance even when...
  6. Hoopoe

    David Systrom, researcher, Brigham and Women's Hospital, USA

    We need a diagnostic test that's not invasive and doesn't require complex devices and the attention of several highly trained specialists for 30-60 minutes.
  7. Hoopoe

    Questionnaires that can differentiate depression from chronic symptoms

    My two cents on the PHQ2 I can have little interest in doing things when exhausted. Resting an hour or several is often enough to reverse that. Sometimes it takes more rest over several days. It's easy to see this is nothing like depression because the advice for people with depression is not...
  8. Hoopoe

    BMJ Neurology Topic Collection: "Advances in Functional Neurological Disorder", 2023

    So these people are entertaining the idea that they might have solved the pathophysiological basis of FND, and also of fibromyalgia, IBS, post-concussion syndrome and ME/CFS. Someone who really believes this has truly lost contact with reality.
  9. Hoopoe

    Genetic Risk Factors for Severe and Fatigue Dominant Long COVID and Commonalities with ME/CFS Identified by Combinatorial Analysis, 2023, Taylor et al

    Discussion in the paper about the overlap between ME/CFS and long covid We found that the CLOCK gene is significantly associated with Fatigue Dominant long COVID and ME/CFS. CLOCK (Circadian Locomotor Output Cycles Kaput) is an important regulator of circadian rhythm, disruptions of which have...
  10. Hoopoe

    Amygdala and Insula Retraining (AIR) Significantly Reduces Fatigue and Increases Energy in People with Long COVID 2023,Toussaint et al

    The difference between the intervention and controls on General Fatigue (MFI) is so small that one wonders whether it would be clinically significant. The intervention was associated with −3.38 point decrease on that scale, and the control group with a −1.40 point decrease.
  11. Hoopoe

    Poll - Have You Ever Believed In Psychosomatic Illness?

    Once I understood expectation and similar biases, and what placebo responses in clinical trials actually mean, claims of psychosomatic causation lost a lot of credibility. It's no coincidence that alleged psychosomatic symptoms/illnesses in many situations resemble various cognitive biases and...
  12. Hoopoe

    Poll - Have You Ever Believed In Psychosomatic Illness?

    I had asthma attacks as child for a year or so. It started in winter. The attacks were unpredictable and I used an inhaler. One day we did physical education in a park, on a warm day so it must have been late spring, early summer, or early autumn. Heavy exertion often triggered attacks. That...
  13. Hoopoe

    Poll - Have You Ever Believed In Psychosomatic Illness?

    In my opinion, no. If we construct this as imaginary illness: everyone seems to agree that psychosomatic illness does not mean imaginary illness. If we construct it as misattribution: misattributing symptoms to something like wind turbines when they have another simultaneously occurring cause...
  14. Hoopoe

    Poll - Have You Ever Believed In Psychosomatic Illness?

    Yvonne went blind after having cleaning fluid spashed onto her eyes. The manufacturer says it can cause nerve damage if absorbed by the eyes. The neurologists can't explain the blindness and decide the only reasonable explanation left is psychosomatic blindness. (what about saying "we don't...
  15. Hoopoe

    Poll - Have You Ever Believed In Psychosomatic Illness?

    If there is a clear relation between a psychological trigger and continued symptoms then it would fit. But that's not how psychosomatic illness seems to be used in the (vast?) majority of cases where that label is applied. It's used in the absence of evidence, in the absence of a clear relation...
  16. Hoopoe

    Poll - Have You Ever Believed In Psychosomatic Illness?

    Yes, because I was young and had never experienced any authorities being totally wrong before. It was a weird, self-destructive experience to believe in psychosomatic causes of my illness, trying my best to do what I was told would help, but only feeling like a failure when it did not help...
  17. Hoopoe

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    But are the FND people not also proudly saying that FND is rule-in diagnosis, based among other things, on the presence of Hoover's sign? I doubt that many ME/CFS patients have "functional weakness".
  18. Hoopoe

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    And why would they think that? As far as I know, there isn't any credible evidence for that. Nor is there any for the kind of "software problem" they evoke in FND. I'm pretty sure most of these FND people have published very little to nothing on ME/CFS. I also doubt that they have regular...
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