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

    I know this sounds hopelessly idealistic (or just plain wrong) but a business case is supposed to inform and ask for (informed) consent. Since this cherry picked a few +ve examples (smoking) but did not accurately reflect the: breadth of Cochrane reviews; or bizarre e.g. the non-zero effect (of...
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    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Thanks for the laugh - if only it were actionable ---
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    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Reminds me of Paul Garner's Newsnight appearance were he assured us that he was ill and cured himself with the power of positive thought ---- if only you could bottle it and sell it ---
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    An unregulated charity which has a very poor record. I've copied an extract from my previous correspondence with NICE*. If NICE look at the quality of the base studies (which they claim*) and exclude studies which are not appropriate, then why link up with Cochrane? The claimed benefit is the...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Too realistic--- Unfortunately, despite the fancy words in the business case, re aligning Cochrane reviews with the needs of the system (NICE's needs), I would not be surprised if the outcome was flawed Cochrane reviews leading to flawed NICE guidelines. E.g. @Caroline Struthers has pointed out...
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    Perceived working mechanisms of psychosomatic therapy in patients with persistent somatic symptoms in primary care.., 2022, Wortman et al

    Presumably if you use an unblinded study and subjective outcome criteria then you can get a positive result --- "Outcome measures Experiences, opinions and views from patients’ and therapists’ perspective on psychosomatic therapy were identified." Results "(1) building rapport; (2)...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Moved post I've had a brief look at the business case. Comments from others on this forum that the "logic" was saving money i.e. through avoiding "duplication" (NICE &Cochrane both doing reviews) came to mind. If you search for "dup" or some such then you'll see 4 hits. Another thing was that...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Thanks Michiel. @Caroline Struthers Michiel has posted the first response from NICE.
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Copied post I submitted a request for: "The latest full business case for the NICE Cochrane collaborative agreement*. If not the same document, please also provide the business case that was presented at the highest-level meeting where the collaborative agreement* was approved.’ NICE replied -...
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    Repurposing Drugs for Post–COVID-19 Fatigue Syndrome Methylphenidate, Duloxetine, and Brexpiprazole, 2022, Manu

    Perhaps the involvement of e.g. dopamine, serotonin, --- something neurological --- would be indicated by a GWAS study? Yes, it seems to be inappropriate to give toxic drugs when there's no evidence that ME/CFS is a disease treated/targeted by those drugs. I wonder if these drugs have been...
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    Systematic reviews do not (yet) represent the ‘gold standard’ of evidence: A position paper, 2022, Moore et al

    OK pretty much everyone on this site agrees that unblinded studies with subjective outcome criteria=useless crap (or worse) The question seems to be why are career scientists publishing systemic studies derived from crap primary studies --- what is the incentive? Maybe the answer (referred to...
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    Systematic reviews do not (yet) represent the ‘gold standard’ of evidence: A position paper, 2022, Moore et al

    I noticed an appraisal of the PACE trial which highlighted that there was no increase in (participants) hours worked, participation in education ---- these type of indicators are also highlighted above. In terms of activity levels, actimetry (FitBit type devices) seems deliverable. However, it...
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    Altered Structural Covariance of Insula, Cerebellum and Prefrontal Cortex Is Associated with Somatic Symptom Levels in (IBS), 2021, Grinsvall et al

    Unfortunately I could go with that abbreviated quote. I'm hoping that the GWAS study [Chris Ponting's] will help to focus biomarker studies and thereby provide useful results.
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    DecodeME - UK ME/CFS DNA study underway

    When do you anticipate sampling to start (saliva in tubes)?
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    Brainstem Abnormalities in [ME/CFS]: A Scoping Review and Evaluation of Magnetic Resonance Imaging Findings, 2021, Nelson et al

    Almost becoming a standard reply from me but the GWAS study (Chris Ponting - sampling starting in May) might provide a way to test hypothesis like this. E.g. presumably if this was a common mechanism then there would be clues in the GWAS results. @Simon M
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    PaxMedica Plans to Initiate Phase 1B Study for PAX-101 (Suramin) in Patients with Long COVID-19 Syndrome

    This one's been kicking around for years [suramin as a treatment for ME/CFS*]; possibly Chris Ponting's GWAS study might provide an indication re a role for purinergic signaling in ME/CFS @Simon M *""People who suffer from Long COVID Syndrome and ME/CFS have nearly identical physical symptoms...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    From this it appears that NICE is doing what it should be i.e. evaluating the evidence. It's difficult to see how NICE could maintain those standards and use Cochrane; particularly since Cochrane seems no closer to changing it's systems to align with the [NICE] protocols you outline...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    That grates given the amount of time and effort @Caroline Struthers has spent trying to get Cochrane to remove redundant reviews. I think @Jonathan Edwards considers that much/everything is spin now - comes to mind when reading "dynamic, living guideline recommendations" Yes if there was a...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    I think @Jonathan Edwards is key i.e. The business case (hopefully released under FOI) should tease out these issues but I kind of expect the drafter avoided highlighting the fundamental flaws in the NICE/Cochrane agreement. Old advice ---- what's the answer you want? Once I know that I'll...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Yea I think there were some weasel words in NICEs reply i.e. assurances that NICE would review the evidence independently (of Cochrane) in accordance with the NICE guideline.
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