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  1. Lucibee

    A general thread on the PACE trial!

    In fact, I've just searched the trial protocol and there is no mention of post-exertional malaise or PEM *at all*. So anything related to symptoms of PEM would have had to have been done post hoc.
  2. Lucibee

    A general thread on the PACE trial!

    No. All they have is a table with numbers of patients reporting "symptoms of PEM" at baseline and 52 weeks. I cannot find a suitable questionnaire in the protocol that might have been used for this. Given that ~40% of the SMC group were no longer reporting "symptoms of PEM" at the end of the...
  3. Lucibee

    A general thread on the PACE trial!

    PACE did not find that GET reduced PEM, because PEM was neither defined properly nor measured.
  4. Lucibee

    Michael Sharpe skewered by @JohntheJack on Twitter

    It depends what it is. If it's acupuncture, then sticking pins in skin/tissue probably does have a local endorphin effect and probably does stimulate inflammatory and consequent anti-inflammatory effects. A punch in the face probably does something similar. Exercise? Yep. Sugar pills? Yum [gut...
  5. Lucibee

    Submission to the Scottish Parliament by Jonathan Edwards

    None of you know what sort of editor I am, because not one of you has ever asked me to do any work for you. So please stop throwing rotten eggs around about editors in general until you know. OK? (FWIW I don't think you are going to get anywhere with PACE or any other psycho-ergo study any time...
  6. Lucibee

    Submission to the Scottish Parliament by Jonathan Edwards

    I'm still here, guys. I can leave if you want me to...
  7. Lucibee

    Submission to the Scottish Parliament by Jonathan Edwards

    I guess your 5 years trumps my 25 years then! I've been on both sides too. And I know what it's like to have howlers created out of what I have written - but that's why it should be a collaborative enterprise. Journals (like The Lancet) often have a strict house style, which will have certain...
  8. Lucibee

    Submission to the Scottish Parliament by Jonathan Edwards

    Editorish? Do you mean "clear"? ;)
  9. Lucibee

    Submission to the Scottish Parliament by Jonathan Edwards

    Editor here would turn it round thus: If you use subjective outcomes, you will get uninterpretable results unless your trial is also double-blind (both patient and investigator don't know which treatment is which) and placebo-controlled (not just dummy-controlled). But I'd add that the design...
  10. Lucibee

    Submission to the Scottish Parliament by Jonathan Edwards

    Oh, but the problems *do* arise from lack of understanding of statistics and trial structure, because so much is reliant on psychology!
  11. Lucibee

    Reports from participants in GET and CBT trials

    If you read the accounts in the pdf (Link to the post with pdf of 19 public statements), participants refer to the trial as "the PACE trials" (plural), implying that they were given the expectation that they would be trying at least 2 treatments. This is not the impression you get from the...
  12. Lucibee

    Article by Paul Worthley

    I had that last autumn - it's called *anxiety*. It lasted for weeks. It was extremely uncomfortable and debilitating. Paralysed by fear. Wanted to run, but couldn't escape. I couldn't sleep, but spent a lot of time retreating to my bed. I also did a lot of pacing (up and down). But it...
  13. Lucibee

    Reports from participants in GET and CBT trials

    No, it isn't. But who knows what went on at Kings. In another account, someone was told they were in the PACE trial 5 years after it had stopped. To help recruitment, it seems they had to tell people that they would get their preferred treatment as long as they stuck with the allocated one for a...
  14. Lucibee

    PACE trial TSC and TMG minutes released

    I looked to see if anyone (of the dozens) involved in the trial had any expertise in exercise physiology - the only one I could find was on the Steering Committee (Prof Patrick Doherty - whose expertise is in cardiac rehabilitation) - and he obviously said nothing. :(
  15. Lucibee

    PACE trial TSC and TMG minutes released

    For those who expressed an interest... (@Robert 1973 @Graham @Adrian @Trish @Esther12 @Luther Blissett @BruceInOz @Barry @Sasha @Jonathan Edwards ) I've now done a step test blog: https://lucibee.wordpress.com/2018/07/06/pace-trial-tiptoeing-around-the-step-test/ It's a bit rough and ready, so...
  16. Lucibee

    Reports from participants in GET and CBT trials

    Thanks @Tom Kindlon - Lois's account was the first one I posted on this thread. She's also been quite active in posting her account elsewhere, and another lengthy account of hers is included in Alem's collection of stories for the tribunal.
  17. Lucibee

    PACE trial graphs and gifs

    If you look at Figure 2 in the main PACE paper, the London ME subgroup come out best on the main outcome measures (tho probably not significantly so, and of course that might be biased by drop-outs) - so arguably, those with "ME" (as defined by their version of the London criteria) are more...
  18. Lucibee

    Michael Sharpe skewered by @JohntheJack on Twitter

    This tweet adds a bit more to the use of CFS/ME terminology: I've quoted the relevant bit of the document here: SW says "Journals certainly only use CFS" - pretty sure that's because he told them to!
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