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  1. Hoopoe

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I agree with him that an effective treatment can give us clues about causative factors. An ineffective treatment also does. The PACE trial therefore tells us that recovery from ME/CFS does not depend on the targets of CBT and GET, illness beliefs and avoidance of exercise.
  2. Hoopoe

    Research news from Bhupesh Prusty

    What kind of problems can dysfunction of the innate immune system produce?
  3. Hoopoe

    Research news from Bhupesh Prusty

    It could be a valid explanation for a subset. Hopefully Prusty can keep a cool head and not let attention from patients trigger excessive confidence.
  4. Hoopoe

    Research news from Bhupesh Prusty

    @Jonathan Edwards what do you think about his idea of innate immune system dysfunction?
  5. Hoopoe

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Patients with devastating illnesses tend to have difficulties remaining objective when evaluating a treatment because they so desperately want it to work. As such the efficacy of treatments is often greatly exaggerated in anecdotal reports or unblinded studies. It is possible that some people...
  6. Hoopoe

    Predicting GP visits: A multinomial logistic regression investigating GP visits amongst a cohort of UK patients living with ME: Walsh et al June 2020

    I meant that it's not a problem of the GP lacking good bedside manner. Some might do because they are frustrated, just like the patients. You're right that it would need a specialist. GPs just aren't meant to take on difficult problems like these. So I feel that this article is unfair on GPs.
  7. Hoopoe

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I thought about what kind of review of exercise therapy for ME/CFS would be appropriate. One with roughly the following content: A conclusion that says exercise therapy cannot be recommended due to an absence (or maybe insufficient number) of studies meeting adequate quality standards and...
  8. Hoopoe

    Predicting GP visits: A multinomial logistic regression investigating GP visits amongst a cohort of UK patients living with ME: Walsh et al June 2020

    People don't trust their GP because their GP is told a lot of false/dubious things about ME/CFS or MUS, leading to immediate alienation, repeated treatment failures or unhelpful advice. The problem isn't really solvable at the GP level. The BPS junk science causing confusion is half of the...
  9. Hoopoe

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I have some issues with describing urinary incontinence as subjective outcome. It think it's an objective outcome. It might be reported in a biased manner by patients but it's observable and isn't a subjective feeling. It's very different from asking patients how fatigued they are. I would...
  10. Hoopoe

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    If mental health research was held to the same standard as the rest of medicine, large portions of it would simply collapse (and maybe that would be best for patients). But the self interest of researchers is considered more important than the well being of patients and that is so wrong.
  11. Hoopoe

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    At the risk of distracting with CCI, I just read on Twitter that in Italy, a doctor claimed multiple sclerosis was caused by a problem in the neck vein called called chronic cerebrospinal venous insuffficiency (CCVI). Patients underwent surgery and some claimed to be cured. Only a few...
  12. Hoopoe

    Lightning Process study in Norway - Given Ethics Approval February 2022

    The gay conversion therapists probably said similar things. "We just want to help and there are these horrible militant activists staging protests in front of our work places."
  13. Hoopoe

    France: Bio-Modelling Systems to start phase II clinical trial(s)

    Contains no details whatsover, but makes some bold claims. Best not to expect anything from this group.
  14. Hoopoe

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    My attempt to better explain how I see the lack of blinding + subjective outcomes problem. Lack of blinding makes subjective outcomes unreliable. Unblinded clinical trials that attempt to determine if a treatment is effective with subjective outcomes are generally worthless. There may be...
  15. Hoopoe

    Webcast: (Medically Unexplained) Physical Symptoms: A Scientist Practitioner Approach June 8 Trudie Chalder

    You mention trauma as cause of MUS. Is that really what they believe? They don't mention that in their explanations I believe. If so then their belief system is even more Freudian than I thought, just cleverly disguised.
  16. Hoopoe

    ‘Help Holger now’ video about a Swedish man with very severe ME

    I've heard this kind of story many times now. It goes roughly like this: young person in school gets mono/flu-like illness, begins to struggle, is diagnosed with depression and treatment seems to make things worse, they keep getting worse and eventually are diagnosed with ME/CFS. They never get...
  17. Hoopoe

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    The thinking seems to be that it is okay to do open-label clinical trials with subjective outcomes if there is no objective marker of disease severity. A sort of "we will do the best we can given the situation". This is an emotionally appealing narrative but it doesn't make sense because all...
  18. Hoopoe

    Webcast: (Medically Unexplained) Physical Symptoms: A Scientist Practitioner Approach June 8 Trudie Chalder

    In a sense, their work is a test of whether the avoidance behaviour (of more than low activity levels) in ME/CFS can be unlearned or not. It can't be unlearned because it's not an irrational fear (ie. fear without basis in reality). Increasing activities will reinforce the behaviour because of...
  19. Hoopoe

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    The problem with the typical clinical trial of CBT/GET research illustrated in this example of various treatments for asthma (except we have no treatment that meaningfully improves objective outcomes, so ignore the albuterol).
  20. Hoopoe

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    You can't reasonably disagree with the position that "Open label trials with subjective primary endpoints (or switched endpoints) are valueless." We know for sure that in other illnesses open label trials with subjective endpoints generate an illusion of treatment efficacy. In ME/CFS there is...
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