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  1. Hoopoe

    Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

    Do you think that CBT/GET proponents know this treatment doesn't work but pretend to honestly believe that it's effective?
  2. Hoopoe

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    They're in a loop trying to save their latest dishonest statement with more dishonesty and it gets less believable every year. In their response to Wilshre et al, Sharpe was essentially claiming that they have found a method to eliminate the issue of biased reporting in questionnaire-based...
  3. Hoopoe

    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    Thanks. Do you know if Soares-Weiser believes the scare stories about patient activists?
  4. Hoopoe

    Individual differences in social network size linked to nucleus accumbens and hippocampal volumes in [FND]: A pilot study, 2019, Perez et al

    This sounds like something that would broadly reflect disease severity, wealth, living circumstances etc. Comparison with a control group adequate for this purpose hasn't been done so who knows whether this tells us anything about FND in particular as the authors seem to think.
  5. Hoopoe

    Assessing cellular energy dysfunction in CFS/ME using a commercially available laboratory test, 2019, Morten, Newton et al

    It would have been better if this test worked, but it's also good to know it's not reliable.
  6. Hoopoe

    Bristol CFS/ME clinic researching patients' problems with Chalder Fatigue Questionnaire

    Maybe they are realizing that it's not a great idea to ask chronically ill people to try and remember how they felt before the illness which may have been years and decades ago.
  7. Hoopoe

    Relationship satisfaction, communication self-efficacy, and chronic fatigue syndrome-related fatigue, 2019, Milrad et al

    I disagree with this sentence. We have no idea if relationship satisfaction or depression are impacting CFS-related fatigue. The impact could be quite plausibly be zero. It is just difficult to tell because fatigue is a nonspecific symptom of various problems and we cannot tell how much each of...
  8. Hoopoe

    Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

    I suspect that many of these testimonials about patients making a miraculous recovery with some commercial program are made up. It is trivial to make them up, and no less of a lie than outcome switching or other misleading research practices which the same kind of people seem to have no problem...
  9. Hoopoe

    Factors associated with work status in chronic fatigue syndrome (2019) S A M Stevelink, N T Fear, M Hotopf, T Chalder

    They could argue that the physical functioning scores reflect perception of physical functioning and that this perception causes poor health and poor work status. All their theories are based on causally interpreting such correlations through a psychogenic lens, so why not here too?
  10. Hoopoe

    Is hereditary alpha-tryptasemia behind MCAS/dysautonomia/hEDS cases?

    The NIH has a page on this: https://www.niaid.nih.gov/research/hereditary-alpha-tryptasemia-faq (I edited this so that it quotes the NIH directly)
  11. Hoopoe

    Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

    It is difficult to definitely prove that the treatment caused this deterioration but this adverse event must be recorded. I think they will try to hide it.
  12. Hoopoe

    Protocol: Persistent physical symptoms reduction intervention: a system change and evaluation (PRINCE), 2015 onwards, Chalder, Moss-Morris, et al

    @Jonathan Edwards can you use this story for the NICE hearing? I think the psychological abuse / brainwashing aspect hasn't been considered much. Telling this story would really illustrate the point that patients can be ruined by CBT/GET while still giving the impression to therapists that...
  13. Hoopoe

    Weekly collapses

    When you feel that this is about to happen, you could drink plenty of salt water and lie down, with feet elevated above the level of your head. Does this make it better? Does this tend to happen within a few hours of eating?
  14. Hoopoe

    Weekly collapses

    In case you have not been tested for POTS, it would be a good idea to do so.
  15. Hoopoe

    A perspective on causation of the chronic fatigue syndrome by considering its nosology, 2019, White

    When a biomarker is discovered, what will happen is not that psychiatrists will continue to treat CFS patients with CBT/GET as White appears to hint at, but that CBT/GET will be shown to be ineffective at treating the illness beyond any reasonable doubt. This is easy to predict because...
  16. Hoopoe

    A perspective on causation of the chronic fatigue syndrome by considering its nosology, 2019, White

    White should be ashamed for ever promoting the false illness beliefs and deconditioning theory. He has no credibility as far as any attempts to discover the cause of ME/CFS or any hypothetical subsets is concerned.
  17. Hoopoe

    Gut microbes and metabolites as modulators of blood-brain barrier integrity and brain health - Parker,Fonseca,Carding Aug 2019

    I am convinced that the gut is relevant to my illness. I think it influences the illness trajectory and severity and that there is some problem with increased permeability. This could also explain why patients often say they feel better with gluten avoidance despite not having celiac disease...
  18. Hoopoe

    Denmark: Analysis and comments to Karina Hansen's journal from when she was sectioned at Hammel Neurocenter

    What a poor girl. It must have been a nightmare. I'm not surprised she broke down in the end. There is only so much daily torture in the form of forced exercise that one can handle. PACE is of used to justify this kind of nonsense as it is cited as evidence that rehabilitation is possible.
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