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  1. Jonathan Edwards

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

    These cases are so rare and the description so limited that I am not sure they tell us much. The only mechanism I can think of is bone or ligament erosion from sepsis - the bone loss might appear after infection has been treated with antibiotic. That seems to be the implied mechanism in the...
  2. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    That assumes rational thinking. That may be a precarious assumption. Not expecting something to work is not the same as not being motivated to help it work.
  3. Jonathan Edwards

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

    Interesting to see the book review. The book is clearly true crap. Bad philosophy and bad science. They don't even understand causation. Even Aristotle did better with his formal cause idea. Why is everything such rubbish these days?
  4. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    Yes, that was my 'in reality more complicated' bit. I keep being reminded how insightful Keith Geraghty's comments on trial design were. It is presumably relevant to 'adaptive pacing' too - which was not expected to work by the people delivering it, even though it was expected to work by the...
  5. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    Yes, now you mention it I remember seeing that as I was checking sources.
  6. Jonathan Edwards

    A general thread on the PACE trial!

    This is to a large extent what my grand round presentation was about. I think there is a simple sense in which the placebo effect for healing of a broken bone is small and the placebo effect for anything where the ascertainment of outcome is subjective, as for pain, is likely to be larger. ME...
  7. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    An odd thought occurred to me in relation to SMILE, which I shall post here since the thread is active. Dr Crawley said she was not expecting the Lightning Process to work. So an apparent beneficial effect ought not to be due to 'expectation bias'. I think things in reality are more...
  8. Jonathan Edwards

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

    I do not understand this. Surgery for CCI is routine in the NHS. Whether or not the patient has EDS I do not think makes any real difference. Upper cervical fusion was done on my RA patients going back to the 1980s. The methods have changed but as far as I am aware are well known. Anyone...
  9. Jonathan Edwards

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

    I really wish we had some medical documentation of what is happening for patients like this. CCI surgery is available on the NHS.
  10. Jonathan Edwards

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

    That sort of thought had crossed my mind too. There is a lot of glib talk about stress causing ME but maybe stress, in the right form, is one way of reversing it. If ME is an abnormal metastable signalling system state then maybe in some forms it can be knocked out of its 'well' and the...
  11. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    I take your point. But there certainly seems to be secrecy around the process in that as far as I know what actually goes on has not been published. Normally when evaluating a treatment you do dose response and kinetic studies to establish which components are the active modalities. How do you...
  12. Jonathan Edwards

    Comprehensive stool test and Regenerus Lab

    I don't think that is an article. It is an advertisement. I cannot see any reason to think what they offer is medically reliable. A reliable lab would not advertise its tests the way they do. It seems to be set up to cater for pseudo medical concepts like detox.
  13. Jonathan Edwards

    Comprehensive stool test and Regenerus Lab

    Judging by the website it is a scam set up. Most of the test names are meaningless in medical terms.
  14. Jonathan Edwards

    Trial By Error: A Plea to Fiona Godlee on a Familiar Topic

    Who is the chairman of the board then? Edit: seems to be Jay Lippincott
  15. Jonathan Edwards

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

    It is a standard part of the general medical assessment that should be the basis of any significant medical diagnosis. The fact that GPs have no time to do any of that is to me an indication that the current model of general practice is an unsafe and inappropriate anachronism. General practice...
  16. Jonathan Edwards

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

    The angles are objectively defined but nobody actually knows what they mean. Henderson seems to be the chief publisher in the field of non-traumatic/non-erosive CCI. He says it is 'reasonable' to measure these angles. Or that a certain angle is consistent or suggestive of CCI. As far as I am...
  17. Jonathan Edwards

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

    For me the problem is that we do not have any studies to have more of. So far I have not seen even an informal public comment from anyone medically qualified endorsing the patients' account of what the diagnosis was, why it was made and its relation to improvement. I am not saying that...
  18. Jonathan Edwards

    A general thread on the PACE trial!

    We had quite a long discussion about this at the other place about five years ago. I don't remember the details. The ACR system is a rather elegant compromise more than an idealised model - it follows the complex pragmatics of how consistent various measures are. The basic idea though is to...
  19. Jonathan Edwards

    EDS, hypermobility, and the link, if any, to ME/CFS

    I had a look at the 2017 paper quoted - I am afraid this is still the same old muddle between GJH and 'hEDS'.
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