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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

    Interesting - I didn't even know it existed. Anything that's publicly funded should meet minimum standards yet as @Hutan @Caroline Struthers and others have highlighted, it seems they don't meet even the most basic standards - it seems that all of the ME/CFS research on CBT and/or exercise...
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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

    @Caroline Struthers provided a good example here* and yes it's to be expected --- *https://www.s4me.info/threads/independent-advisory-group-for-the-full-update-of-the-cochrane-review-on-exercise-therapy-and-me-cfs-2020-led-by-hilda-bastian.13645/page-80#post-390317 Yes, you need to design...
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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

    When you use subjective outcome criteria (questionnaires) and the study is inadequately blinded then you will get a non-zero +ve effect. @Jonathan Edwards described this as "placebo" and it reminds me of the Hawthorne effect*. However, if you look at the studies of actimetry (objective) versus...
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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

    It would indeed be possible and it would be an good idea since there may be folks who would look at the GRADE/Cochrane analysis and could publicly challenge it. Yes, if NICE are going to use Cochrane/GRADE then NICE should work with Cochrane to try to improve the Cochrane/GRADE assessments. I...
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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

    You're probably right but @Jonathan Edwards set it out very simply* and @Brian Hughes set it out in more blunt terms --- EDIT there is a better way to do studies --- they just don't seem to be motivated to do better work. Maybe the funders (NIHR, MRC ---) should be our target; I think someone...
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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

    Don't know if I'm answering your question here. I think moderate quality evidence that the effect of the intervention was non-zero. However, if you look at the fact that the trials were unblinded and used subjective outcome indicators, then the claim that these trials provide ---moderate...
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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've only skimmed this but it reminds me of what @Brian Hughes has been saying i.e. these studies simply replicate previous flawed studies (un/inadequately blinded plus using subjective outcome indicators - questionnaires). Yes, why isn't this designed out at the beginning and how come the...
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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

    Hi folks, on September 21st I emailed NICE* to express concern re their use of Cochrane reviews to evaluate evidence; referring to the recent NICE review which referred to "low" or "very low" quality of the studies - Cochrane had evaluated as "moderate" [Myalgic encephalomyelitis (or...
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    Neocortex saves energy by reducing coding precision during food scarcity, 2021, Zahid Padamsey

    Might this explain some of the statements/reactions from members of the Royal Colleges to the new guideline?
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    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Thanks for this - pretty incredible. So cognitive processes can bring about---changes in the immune system, nervous system and hormonal system I suppose it would be too much to expect evidence to support that statement; although I suppose it depends what you mean by evidence.
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    Use of whole genome sequencing to determine genetic basis of suspected mitochondrial disorders: cohort study, 2021, Schon et al.

    Obvious person to alert is @Simon M but there may be others. Think the recent video update from Chris Ponting mentioned that the ME/CFS GWAS study (DecodeME) could eventually move to whole genome sequencing study i.e. using the DecodeME samples (correct?).
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    Trial of Long Covid treatment - AXA1125 from Axcella Therapeutics, 2021

    Interesting. Is there a reliable test for ---accumulating lactic acid in their muscles? Plus, as you've pointed out - where's the data/study?
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    Trial of Long Covid treatment - AXA1125 from Axcella Therapeutics, 2021

    If you check out some of @Jonathan Edwards comments then you'll see that there's no evidence of classical autoimmunity in ME/CFS though there is support for a trial to look for autoantibodies. There's a thread here* re a new method to detect autoantibodies [REAP] - Aaron Ring at Yale is doing...
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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 really don't keep up with Cochrane/Grade --- Basically, as @CRG has set out, NICE is responsible for preparing the guidelines --- if something inappropriate is incorporated into a guideline (dodgy assessments by Cochrane or whatever) then --- NICE is responsible So basically NICE can use...
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    Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!, 2021

    Thank you very much for the advice and encouragement; I couldn't register via my laptop but it worked OK on my phone. I followed your advice, re only using the special character listed, i.e. not a number - I used 10 characters but I it would work with 8 - 15 (as suggested). Now that I've...
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