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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Not quite sure which organisation you are referring to. Re NICE - it occurred to me that the Cochranites, within NICE, are analogues to free masons --- if you want to make it up the NICE career tree, then a belief in the principles of GRADE/Cochrane are fast track routes. As for Cochrane, yes...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I think these are two excerpts from your email to Gillian Leng: "It was a shocking revelation, via Freedom of Information, that a person who is on first name terms with you and also acknowledged to be connected with the Royal College of Psychiatrists, put pressure on you to alter the NICE review...
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    Protocol ReCOVer: A RCT testing the efficacy of CBT for preventing chronic post-infectious fatigue among patients diagnosed with COVID-19.

    Post it all over social media and tag them - that way they may have to respond i.e. to defend their reputation.
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    Protocol ReCOVer: A RCT testing the efficacy of CBT for preventing chronic post-infectious fatigue among patients diagnosed with COVID-19.

    I haven't read the above so this is speculation--- [Knoop] "The actometer is only used to monitor patients prior to treatment divide into an active group and a less active group." Incredible seems reasonable. Actimetry is OK to select participants, but it's not OK to measure the outcome ---...
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    Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis, Bjornevik et al (2022)

    Perhaps no association between MS & anti-GlialCAM antibodies suggests either that: anti-GlialCAM antibodies are irrelevant, or the test for anti-GlialCAM antibodies, used in the study, is crap (poor).
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Yes, I wonder if certain responses resonate with the papers line/underlying beliefs and are deliberately selected for publication on that basis. Perhaps, if you don't share those beliefs then you will not persist on the site, so it's only the faithful who populate the space; therefore, those...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    I agree i.e. Leng's involvement with both organisations (NICE & Cochrane) should have been noted in the final announcement of the NICE/Cochrane collaboration and indeed the business case re that collaboration. Yes, @Caroline Struthers acknowledged Leng's suitabilty e.g. to head up Cochrane. I...
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    Immunoglobulin signature predicts risk of post-acute COVID-19 syndrome, 2022, Cervia et al

    Moved post Immunoglobulin signature predicts risk of post-acute COVID-19 syndrome https://www.nature.com/articles/s41467-021-27797-1 The lead author, or at least the last named author on the paper, Onur Boyman, was interviewed on BBC Radio 4, Inside Science, today. He mentioned a link between...
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    Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis, Bjornevik et al (2022)

    Just to (further) demonstrate my ignorance - if the real story is that the immune system is targeting glialCAM - then perhaps a reliable test for glialCAM autoantibodies = a biomarker for MS.
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    Longitudinal analysis reveals high prevalence of Epstein-Barr virus associated with multiple sclerosis, Bjornevik et al (2022)

    Rather than using peptides as antigen perhaps they could produce the protein* or part of it and use that as antigen. OK that all takes time and money. *e.g. https://www.biorxiv.org/content/10.1101/2021.02.11.430703v1
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    Bias due to a lack of blinding: a discussion

    I vaguely recall a BBC Radio (4?) program re the crisis in science; e.g. one guy (a social scientist) owned up to making up his results. So there's a problem with a lot of research, it's plain unreliable. The program contrasted the recent problem with the golden (post war) era when much good...
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    Politico: He Was Given 6 Months to Live. Then He Changed D.C. (Brian Wallach ALS)

    I bounced Solve an email suggesting they maybe try to get ME/CFS as a comparator but not sure they picked up on that ---- they were more interested in potential research re activity management.
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    @CRG I was a little surprised to learn that Gillian Leng, recently retired Chief Executive of NICE, "[had been]Editor for the Cochrane Collaboration for many years, and is now chair of the Guidelines International Network"*. NICE of course recently signed a collaborative agreement with Cochrane...
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    Insular cortex neurons encode and retrieve specific immune responses, 2021, Tamar Koren et al.

    Merged thread Article in Nature: Inflammation in the gut is encoded by neurons in the brain "The nervous and immune systems interact in a bidirectional manner. It emerges that inflammation in the body activates brain cells that, when later reactivated, can trigger a recapitulation of the...
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    Politico: He Was Given 6 Months to Live. Then He Changed D.C. (Brian Wallach ALS)

    Yea James Baraniuk used people with ME/CS as a comparator group for Gulf War (syndrome?) so maybe it's possible to get ME/CFS in that way. Better to have ME/CFS as a named condition though. There's been some talk that the EU will use "poorly understood diseases with a high disease burden" [EDIT...
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    United Kingdom: Independent SAGE

    Don't know if anyone has picked this up - Independent Sage briefing today is doing a feature on Long Covid - begins 37 minutes from the start - Lesley MacNiven [Chair of the Long Covid support Group] is one of the contributors (37 minutes).
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Thanks Occurred to me that it might be a good idea to try to inform some of the charities, as well as the APPGs; i.e. since the charities probably lobby the APPGs (and indeed the Department/Minister for Health and Social Care).
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Interesting, but so far Cochrane systemic reviews seem to be characterised by the failure to assess the quality of the evidence [unblinded studies with subjective outcome criteria +++]. So this would require a pretty much 180 degree turnaround. NICE having to validate the evidence looks like...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Wow "I could probably produce a report for the APPG on how many out of date Cochrane reviews are still on the Library with no update in progress." For an organisation (Cochrane) being recruited by NICE to produce "living guidelines" that sounds more like fossil than living. Yes, I think that...
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