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  1. Sean

    What does deconditioning look like? - ME/CFS Skeptic blog

    The Anomalies paper was published less than a year ago and it uses GET, and all three PACE PIs are authors on that paper. Or even deconditioned at all. There is simply no evidence that it is a primary feature of ME/CFS. Not on its own, certainly. But it has long been a core assumption in their...
  2. Sean

    What does deconditioning look like? - ME/CFS Skeptic blog

    Only 15% (11/75) reported that they had believed that their condition was related to physical deconditioning at baseline whereas 81% (61/75) believed this after treatment I have real trouble believing the researchers actually believe this is a practical meaningful result. Frankly, all it...
  3. Sean

    Care and Support Plan template free to download, Action for ME

    With M.E., the body’s systems are thought to have become poorly regulated and hypersensitive. The body is in a constant state of 'high alert', almost as if a switch has been thrown and the whole system is in a state of emergency. This is thought to be why the smallest of stressors such as noise...
  4. Sean

    What does deconditioning look like? - ME/CFS Skeptic blog

    Excellent. Thank you. :thumbup: Another finding that does not fit the theory is that ME/CFS patients are not extremely deconditioned. I think this is one of the most interesting features and important clues about ME. We should, by all conventional understanding, be far more deconditioned than...
  5. Sean

    Sweden: Socialstyrelsen's new national guidelines for "Postcovid and other related conditions and syndromes" including ME/CFS

    News to me. Meaningless nonsense. Yet, they then state: Nothing has changed. The BPS mentality still rules the roost.
  6. Sean

    News from Scandinavia

    personalised rehabilitation Anytime I hear those words my alarm bells starting ringing loudly. I mean, it's nice words and all, and I really hope they deliver. But the hard earned cynic in me will wait until I see the details of what they are going to do, and hear patient reports of what...
  7. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Not any more. They clearly hate and fear us, and are prepared to get us out of their clinics as fast as they can. This is exactly what is happening, and is why I often say that the BPS club could not have got away with what they have (and continue to do so) without sustained high level support...
  8. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Yep, and they are doing exactly this with exercise too. Pretending it is just to help prevent secondary deconditioning, but really just using that as cover to impose it as a primary treatment, on exactly the same shitty pseudo-rationale as before.
  9. Sean

    How do you recover from the trauma of systemic disbelief?

    +1. I think that psychosomatics, broadly defined as the belief in mind over matter, is the most insidious and destructive false idea of them all. In no small part because everybody, understandably, wants it to be true, and it manifests itself in myriad forms. But it is false. We are finite...
  10. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    And what is the penalty, the disincentive, for getting wrong? Apparently not even patients dying seems to invoke any real concern in them about how they do things and treat us. I think it is entirely this now. Medicine – especially the UK branch, the original epicentre and still the...
  11. Sean

    Bias due to a lack of blinding: a discussion

    I think it was @Peter Trewhitt who pointed out a while back that the basics of experimental psychology were figured out fifty years ago. The BPS club have completely failed to deliver a robust explanatory and therapeutic model by those standards, so they have simply downgraded standards until...
  12. Sean

    How do you recover from the trauma of systemic disbelief?

    And don't want to, for the most part. A tube of chemicals.
  13. Sean

    Insights into COVID-19 pathophysiology from a longitudinal multisystem report during acute infection, 2024, Brihmat et al.

    I have sometimes wondered if there is a lateral axis component to ME/CFS.
  14. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Yep, need to wait for the September stuff.
  15. Sean

    Maeve Boothby O'Neill - articles about her life, death and inquest

    The statements about ME/CFS being biological, potentially fatal, and in urgent need of competent adequate services, could be read as a legal warning to the medical profession to get its act together.
  16. Sean

    Exhaustion in ME/CFS, what is it and what causes it - discussion thread

    +1 Because it is important to know why there is a reduced and sometimes an absence of capacity for action, what is causing it. For both political reasons in dealing with psychs, and for scientific reasons in understanding and developing management and treatments. It is necessary to know if a...
  17. Sean

    The use of the labels ME, CFS, ME/CFS

    While no doubt there are some good reasons to avoid naming diseases or syndromes after people (or places? i.e. pronouns), there are a couple of downsides to requiring a name to reflect some supposed distinguishing characteristic (symptom or cause): First, it biases perceptions, as we have seen...
  18. Sean

    News from the USA, United States of America

    Walz could be good for us.
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