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  1. Hoopoe

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

    Is there any realistic chance that we get our own special report on Cochrane?
  2. Hoopoe

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

    Cochrane cares about their image and brand. Showing how biased, incompetent and anti-patient welfare the reviewers and management is will hurt their image and brand.
  3. Hoopoe

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

    How do you think should this be addressed? Can we make an infographic that explains how lack of blinding leads to nonsensical conclusions? We can show results from that one asthma study and the open label Rituximab study. What the Cochrane review does (as far as I remember) is that it treats...
  4. Hoopoe

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome' 2017, Larun et al. - Recent developments, 2018-19

    They could save face by moving ME/CFS into some other category where the scientific standards are higher. So the elephant in the room doesn't have to be acknowledged.
  5. Hoopoe

    Esther Crawley (2019) Physical activity patterns among children and adolescents with mild-to-moderate CFS / ME [baseline accelerometer MAGENTA data]

    I think there is a boom and bust pattern but it doesn't involve anything that could be considered a boom in activity, and may involve only occasional transitions from an above average activity level (for that patient) to below average activity levels (for that patient). So it's something that...
  6. Hoopoe

    Video clip of a Australasian conference on MUS, mentions ME.

    Re. McMegan: It's all based on PACE and other papers by the same authors who insist that their theory is supported by evidence when it is not. One could say they have a problem with fixed and false beliefs. The negative feedback by patients is presumably why they are considered especially...
  7. Hoopoe

    Video clip of a Australasian conference on MUS, mentions ME.

    Labelling patients as "dependent clinger, entitled demander, manipulative help-rejecter, self destructive denier" reveals an attitude that does not favor good patient-doctor relatonships or empathy. The psychosomatic belief system seems to perpetuate itself in part by presenting itself as the...
  8. Hoopoe

    Video clip of a Australasian conference on MUS, mentions ME.

    There are many studies showing abnormalities. Some of these abnormalities seem to be real. Are these not a hint that there is a pathology and that patients aren't imagining things? Ironically, patients are probably keen to cite these studies because they are trying to counter the idea of false...
  9. Hoopoe

    Video, Emerge Symposium 2019: Dr Neil McGregor, An Omic Analysis of ME/CFS – an Assessment of Potential Mechanisms

    Interesting article on glucose, insulin and energy production in ME/CFS. I see parallels to my own case. I need to eat often or I get weak, and eating something sugary can often compensate for exhaustion or weakness...
  10. Hoopoe

    Suggested Pathology of Systemic Exertion Intolerance Disease [...] (2019) Bohne

    Interesting. Maybe patients have adapted to exist in a high lactate state?
  11. Hoopoe

    Michael Sharpe: Mind, Medicine and Morals: A Tale of Two Illnesses (2019) BMJ blog - and published responses

    Maybe the BMJ has cold feet? There were a lot of complaints about this article.
  12. Hoopoe

    Researcher Interactions Patient Representative Reports from Dr Karl Morten's collaborative group, Oxford, UK

    Is it a good moment to raise funds for the Morten team? We want them to keep working on ME and with more funding they could collect more data that will help with a successful application.
  13. Hoopoe

    The science of craniocervical instability and other spinal issues and their possible connection with ME/CFS - discussion thread

    He will probably do the nanoneedle test before and after the surgery. There is a lack of evidence that viruses and antibodies are the cause of continued ME so that is not a good argument.
  14. Hoopoe

    Abnormal blood lactate accumulation during repeated exercise testing in ME/CFS, 2019, Lien et al

    They've carved out their niche in society and it depends on them being experts in mental disorders. That role must be separate from that of a neurologist or neurologists would replace them. Not that this necessarily bad. They're just hypocrites.
  15. Hoopoe

    Researcher Interactions Patient Representative Reports from Dr Karl Morten's collaborative group, Oxford, UK

    I don't understand why everybody isn't focusing 100% on finding out what's in the blood that causes problems.
  16. Hoopoe

    Stanford Community Symposium 2018: Phair, Metabolic traps, Tryptophan trap

    I have wondered whether epidemic ME is the same illness as today's ME that is mainly not epidemic.
  17. Hoopoe

    Psychology Today blog platform: "It's All in Your Head - The relationship between contested illnesses and psychiatric illnesses"

    The article creates stigma by negatively stereotyping patients in various ways. I agree that patients are definitely not afraid of having a brain condition. I think we are afraid of being labelled as having a psychosomatic condition because then we would be shunted off to Alice in Wonderland...
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