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  1. Hoopoe

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

    I could relate to her when she crashed hard after going out, although I don't crash in the same way as she did in that scene. Then again I'm not as ill as she was at the time and it's difficult to predict how things would be if I was.
  2. Hoopoe

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

    A muddle is the reality. There may be a human tendency to respond to uncertainty with dogmatism but this is of no help when wanting to find out the truth. It is easy to define some hypothetical true ME as whatever remains unexplained, or by whatever some authority figure says (but why this...
  3. Hoopoe

    Beware creating a moral panic about antivaxxers Fiona Fox The Times 2019

    https://link.springer.com/article/10.1007/BF02698479
  4. Hoopoe

    Beware creating a moral panic about antivaxxers Fiona Fox The Times 2019

    Furedi has written on CFS, in an article about medicalization. I think this tells me he is writing about things he knows nothing about. Unfortunately sci hub is not working at the moment so I can't read it.
  5. Hoopoe

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

    The illness model they propose tells us something about them. They did not gradually develop this model while being guided by evidence. They pulled it out of thin air, asserting that it was the truth. This model then gave them the authority to pressure patients, for example in the context of...
  6. Hoopoe

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

    The real problem is that medicine is generally bad at handling patients with unexplained illness. They think unexplained means somatizing, and that their job is to manage the somatizing patient by being nice or deceptive, but they have not shown that somatization is a real thing or is occurring...
  7. Hoopoe

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

    It is insulting to suggest that patients cannot tell the difference between deconditioning and chronic illness, or that they erroneously think to be ill, and other similar things. It is also flawed logic, as it's ultimately based on the idea that absence of evidence is evidence of absence.
  8. Hoopoe

    Rituximab and placebo response

    This may be off topic but transient responses to some drug or supplement seem to be typically interpreted as placebo effect. It's important to realize that this interpretation is not based on actually observing a "placebo effect" but merely a transient self reported response. It seems plausible...
  9. Hoopoe

    The troubled history of psychiatry

    Mental disorder seems to often be informally defined as any behaviour or opinions that are sufficiently distant from what is considered normal. This means that in one culture, a behaviour could be mental illness while in another it could be normal.
  10. Hoopoe

    The Conversation: "The scandal that should force us to reconsider wellness advice from influencers" May 2019

    What an amateur. She should have promised big healthcare savings, gotten funding for a large unblinded subjective RCT, switch outcomes and then publish in The Lancet.
  11. Hoopoe

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

    Is it at all plausible that neck pain could come from poor posture, which in turn comes from weakness? In the sense that we are exhausted and don't have a good posture because of that. Or much of a posture at all if we lie down a lot. This is relevant because if PWME have neck pain they now...
  12. Hoopoe

    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    An updated IOM report which includes a section on treatments would also be useful.
  13. Hoopoe

    Special Report - Online activists are silencing us, scientists say Reuters March 2019

    We need to get the NIH to publish a position paper that debunks this ridiculous narrative that PACE is being unfairly criticized, or that patients are hostile to researchers in general or criticize because they "don't like" the findings as opposed to the methodology being terrible and...
  14. Hoopoe

    Psychometric properties of the Cognitive and Behavioural Responses Questionnaire (CBRQ) in adolescents with CFS, 2019, Loades, Chalder et al

    Meanwhile evidence that CFS is perpetuated by thoughts and behaviours is yet to be produced. The tricky part is showing that these thoughts and behaviours are not a normal or appropriate response to being ill. You have to take all the factors that are specific to ME/CFS into account. The high...
  15. Hoopoe

    Jen Brea: My ME is in remission

    That is how we should proceed. It seems likely that subsets exist. With every subset identified, figuring out the remaining ones gets easier.
  16. Hoopoe

    Jen Brea: My ME is in remission

    @Jeff_w how is traveling in a car when you have CCI?
  17. Hoopoe

    Jen Brea: My ME is in remission

    Sounds very good. Almost too good. Let's hope this lasts.
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