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  1. Esther12

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    What a ridiculous statement from Sonya. Could there have been any way to prevent researchers from responding to concerns? What about the HRA's work makes Sonya think that they are the appropriate channel for concerns like this? Is she really impressed by the quality of their analysis of PACE...
  2. Esther12

    UK - Legal advice on claims for chronic pain and somatic symptom disorders - notes from a seminar

    I wasn't sure if this was worth posting. Christopher Bass on 'What lawyers should know about Somatic symptom disorder ': https://www.2tg.co.uk/wp-content/uploads/2019/05/2TG-Seminar-Handout-Managing-Chronic-Pain-10.05.2019.pdf A part of: Personal Injury Seminar The Effective Management of...
  3. Esther12

    Why the Cochrane review on exercise therapy for chronic fatigue syndrome is still misleading

    Welcome, and thanks for the explanations - I think that a lot of it is down to our own subjective judgements. A few things where we might have been misunderstanding one another?: I see - so you're writing as if the 2019 publication and the 2015 publication are really the same review? To me...
  4. Esther12

    Trial By Error: Bristol’s Report Due Soon; Slides from My Oxford Talk

    I feel a sense of dread about another UK cover-up. There have been so many examples recently showing that the truth really doesn't seem to matter here.
  5. Esther12

    Why the Cochrane review on exercise therapy for chronic fatigue syndrome is still misleading

    Thanks again Michiel. I've really appreciated all the work you've been doing on this. A few quick points, rushed out before I go to bed: Just in terms of emphasis, I think that I'd have started with your section on 'a lack of blinding' and also made clearer that when you talk about outcomes...
  6. Esther12

    The influence of the Cochrane review on GET

    An inevitably depressing thread. We need a post that links to all the the good Cochrane posts @Michiel Tack has been doing!
  7. Esther12

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    For so many important issues it seems that Cochrane can just let Larun choose to ignore them. I've never understood what was going on there. Given what else we've seen from the PACE researchers it's difficult to assume that there's no reason for concern, but I'm also not sure there's a strong...
  8. Esther12

    "Body Reprogramming: Patient guide for recovery using the Hyland model"

    Just saw this, with some interesting replies, on the Hyland body retraining approach:
  9. Esther12

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    To be fair, I know some people who put a lot of time and effort into trying to get AfME to improve when Sonya first came onboard, and most of them seemed to come away thinking that it was only public pressure that was of any value as AfME have in-built problems which meant that the truth didn't...
  10. Esther12

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    While expecting others to have confidence in their own indefensible subjective judgements. It seems that CFS research has done a better job of providing insight into the problems with CFS researchers than CFS patients.
  11. Esther12

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    This is a bit of an abstract post of little relevence to the Cochrane review! I'd normally agree with "nobody knows better", but I'm not sure how much we should "respect patients' ability to describe their own experience". It seems like humans often aren't very good at that sort of thing. If...
  12. Esther12

    Action for M.E. 2019 AGM and conference 15th October 2019

    “When healthcare professionals who do not specialise in #MECFS treated people with M.E. with graded exercise therapy there was a considerable increase in a #pwME experiencing a worsening of symptoms.” Where does that "who do not specialise in #MECFS” come from?
  13. Esther12

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    Would/could they exclude Jason for baseline differences (are those differences apparent for 6mwt data?)?
  14. Esther12

    2019 Cochrane Methods Symposium: Developing robust review protocols with increasingly diverse evidence, 21st October, Chile

    With Jonathan Sterne, from Crawley's SMILE trial, and Julian Higgins who is a co-author with Crawley on this still unpublished review of 'recovery' in pediatric CFS: https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=9303
  15. Esther12

    Action for M.E. 2019 AGM and conference 15th October 2019

    This is the summary they give for their MUS section: https://actionforme2019conference.eventzilla.net/web/event?eventid=2138742076
  16. Esther12

    News from Scandinavia

    We're still waiting for his analysis of PACE, that he promised about four years ago, aren't we? We doesn't seem like someone with an imprssive grasp of the details.
  17. Esther12

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    Thanks again for all your work on this @Michiel Tack One reading of that summary is that if the authors of a review were looking to report positive results for an objective outcome they could probably find a way to do so if they were careful in the way they grouped together objective outcomes.
  18. Esther12

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    Just to slightly complicate this point, I have heard that Wallman considers the treatment tested here to be closer to pacing that GET. It could be that is just said to people critical of GET? Or it could be that it is misleading to lump it in with GET trials. One problem with 'exercise therapy'...
  19. Esther12

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    It can still be a useful way of trying to think about and understand their work, but it's important to also remember to be critical of the preferences and judgements that lead to them conducting analyses of such questionable value. It's probably going to take us a while to get to grips with the...
  20. Esther12

    Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

    I don't think we have a direct outcome for fatigue. That absence doesn't make the Chalder Fatigue Questionnaire any more valid though! I'm sure I was recently reading something about the importance of showing a questionnaire was a valid measure of what it was supposed to be measuring, and...
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