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  1. Jonathan Edwards

    COMPare Trials, Ben Goldacre et al

    Wasn't the last tremendously exciting thing he got involved in something to do with psychosomatic illness or something? If we all already knew the system was broke I am not sure what these numbers add. There is also a mammoth in the room from before.
  2. Jonathan Edwards

    My Label and Me: I’m not tired and lazy, I have ME

    Does the wide range of stories put out by AfME include accounts of cure in four days with LP? Or recovery after stem cell therapy, rituximab or faecal transplant? I suspect those would be considered not quite suitable. So where's the difference?
  3. Jonathan Edwards

    My Label and Me: I’m not tired and lazy, I have ME

    That would be informed consent, as in controlled trial?
  4. Jonathan Edwards

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    Aha. It's much easier over here. DD for divinity, MD for medicine and PhD for everything else pretty much. (We do like to have everything backwards.) I think we may have Literary degrees too. Of course Oxford gets all the names wrong, as ever, and I wouldn't know about the University of Weston...
  5. Jonathan Edwards

    My Label and Me: I’m not tired and lazy, I have ME

    He's allowed to tell his story but 'finding GET to be helpful' does not equate to being helped by GET. I see no need to suggest his ME is atypical. In adolescents significant improvement or recovery seem to be fairly common and will likely occur at a time when treatment is being provided but...
  6. Jonathan Edwards

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    Sadly I will be away again. It will be fascinating to see which side all these people finally decide they are on. A play for @Robert 1973 to write. It starts off seeming as if you know which side everyone is on - and they think they do too- but gradually it becomes clear everybody has a foot on...
  7. Jonathan Edwards

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    I think this blog by Bastian may be of huge significance. Poor @dave30th still has to contend with being called a Mr Activist DPh. But Bastian cannot credibly be cast in this role - especially as she was a founder member of Cochrane. She is a card carrying member of the 'what's best for...
  8. Jonathan Edwards

    Blog: Maintaining high research integrity standards at PLOS ONE

    I wonder why he feels the need to reassure people about this?
  9. Jonathan Edwards

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    It is interesting that Colquhoun has congratulated Bastian. I also tried to get him interested a couple of years ago. He said it was too complicated. I think he is wrong about ME being more than one condition in an important sense. There maybe many causes but there seems to be a central pattern...
  10. Jonathan Edwards

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    I am trying to catch up. Trials do test hypotheses about causation. My trial of rituximab in RA was primarily designed to test the idea that B cells played an important role in RA. I think PACE would have been capable of refuting the model if recruitment had been tighter. The model was that...
  11. Jonathan Edwards

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    I cannot answer without the evidence. However, if the previous head of department had been present he would have been more likely to agree if 'unless' was replaced by 'especially if'. Maybe followed by (laughter from audience)
  12. Jonathan Edwards

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    Today I managed to canvas the opinion of the members of the University College London Department of Medicine at Grand Rounds. The attendance was good, about 80, for a presentation on medical negligence. I asked of the statement: An experiment with subjective outcome measures not blinded to test...
  13. Jonathan Edwards

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    That is interestingly sketchy. It could be considered inadequate because it says nothing about patients being obliged to engage with the way the therapist wants them to see their illness. It does not say that cognitive strategies will be used to persuade the patient to see their illness...
  14. Jonathan Edwards

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    I cannot remember where it was. It was flagged up on a thread last week. Something about 'complex CFS cases ' being an exception. There was discussion on the thread about mental capacity issues.
  15. Jonathan Edwards

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    @Robert 1973 I think the drug scenarios may be analogous but maybe the important point is that the tactic is unethical whatever it is linked to. I think the problem is close to the comment in the RCGP document that ffctivly says that people with ME/CFS ar exceptions to the legal position on...
  16. Jonathan Edwards

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    But there is nothing new about this debate. It has been going on ever since neurasthenia was coined as a term for a strictly biomedical problem (and then got twisted into a term for a psychosomatic problem). As Wessely points out in New Wine in Old Bottles, the debate is over 100 years old.
  17. Jonathan Edwards

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    It doesn't establish anything, because it is not actually based on any new scientific knowledge that has proved replicable, and anyway you are saying the scientific stuff does not matter. Sure, everyone is entitled to whatever care is likely to help them if they have contributed to a common...
  18. Jonathan Edwards

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    But I thought you said this scientific debate was irrelevant? I cannot follow this.
  19. Jonathan Edwards

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    Sorry Diane, but although this may be the popular lay perception the reality within the medical community is much more complex and really not much like this at all. There have been all sorts of opinions all along and they have not changed that much. I don't think the IOM pronouncement is really...
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