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  1. J

    FOI request re PACE Cost-Effectiveness Analysis

    In response to the Expression of Concern, the Statement of the Authors says: https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0177037 During negotiations with the journal over these matters, we have sought further guidance from the PACE trial REC. They have advised that public...
  2. J

    A general thread on the PACE trial!

    Yes, that was my thought as well. And the acknowledgement that KCL is seen as a centre for CBT by patients does suggest that it has been/was getting a biased sample: getting patients who went there looking for CBT. (And equally, odd though it seems to us, patients were going to Barts/QMUL for...
  3. J

    A general thread on the PACE trial!

    Two interesting posts @Lucibee . I'd refer to 20040927 TSC as well, p8/9: King's (where Wessely and Chalder were/are based) was seen as a CBT centre and also one which 'has a higher portion of referral with mis-diagnoses or previous treatment'.
  4. J

    A general thread on the PACE trial!

    Yes, I agree it is apparently common and not specific to PACE.
  5. J

    A general thread on the PACE trial!

    I have finally got some time to start reading through the minutes of the TSC. Something I noticed has relevance to the discussion I @Michiel Tack and others were having about the patients. It's in the minutes for the third meeting of the TSC, on 29/06/2005 (or possibly 29/07/2005). On page 4...
  6. J

    David Tuller: Trial By Error: “Talk is Cheap,” Patients Tell NIH

    Yes, I think that would be an interesting angle. In this regard I was interested in the Morton presentation slide 26 https://www.meassociation.org.uk/wp-content/uploads/ME-Auckland-Karl-Morten-Presentation-12.12.18.pdf
  7. J

    David Tuller: Trial By Error: “Talk is Cheap,” Patients Tell NIH

    I think this is a very interesting point. My own view from my own experience and one that I have held for some time is that research currently is focused on trying to find some sort of marker in patients and then work back from there. I and many, though by no means all, trace our ME to a nasty...
  8. J

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    But as his Twitter profile shows he is interested in studying how stress can cause illness.
  9. J

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    Thanks, Phil. I think part of the problem is that they all do genuinely think it's real and physical, but then there is only the physical, there is no 'ghost in the machine'. Carmine is interested in how psychological stress can cause physical symptoms. He, like Sharpe, wants to see how they...
  10. J

    Measuring fatigue. Discussion of alternatives to questionnaires.

    Yes, something like that could work. It's certainly true focus is one of the problems.
  11. J

    Measuring fatigue. Discussion of alternatives to questionnaires.

    True, though I'm not sure it would capture the full disability.
  12. J

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    If true, I'm sure we all wish Sonya all the very best and a fast and full recovery. Perhaps we could ask @Action for M.E. that if you are going to respond to this study, you will take into full consideration the points raised in this thread and in the excellent blog by @sTeamTraen Tagging in...
  13. J

    Measuring fatigue. Discussion of alternatives to questionnaires.

    Interesting, but even accelerometers are about physical fatigue. My symptoms are primarily cognitive. Though how anyone could measure lack of mental energy, inability to process information, indecision, poor concentration, etc, I have no idea.
  14. J

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    I seem to recall he was asked about this in 2017 and without disowning his review said that he didn't think ME was caused by excessive rest.
  15. J

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    Here you go. https://static-content.springer.com/openpeerreview/art:10.1186/1741-7015-11-64/12916_2012_824_ReviewerReport_V2_R2.pdf ETA: That's from a link here: https://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-64/open-peer-review
  16. J

    Persistent fatigue induced by interferon-alpha: A novel, inflammation-based, proxy model of Chronic Fatigue Syndrome, 2018, Pariante et al

    Good point. But that doesn't fit the narrative of how Wessely rescued the illness and was the only one who took it seriously. It is 30 wasted years.
  17. J

    United Kingdom: Science Media Centre (including Fiona Fox)

    This is fantastic. She is utterly shameless. By the way everyone, did you know I have an OBE as well? It is so ignorant as well. She shows a fundamental misunderstanding of what knowledge is.
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