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    Open Effectiveness of Acceptance Commitment Therapy or Micro Breaks in Patients With Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis

    Yea usual crap (maybe not appropriate on the day that's in it) reminds me of @strategist and @Jonathan Edwards comments here* "system that allows even homeopathy to reach the status of evidence based treatment for almost any condition (if sufficiently subjective endpoints are chosen)". The...
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    UK: NICE Longcovid guideline 2020

    Yea, I copy my emails to NICE, re the use of GRADE/Cochrane, to the LongCovidSOS group and the covid APPG i.e. as well as the ME/CFS APPG. I've also emailed the LongCovidSOS group to encouraged them to learn from the ME/CFS's communities experience [Note*]. I've also contacted Dr Nisreen Alwan...
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    UK: NICE Longcovid guideline 2020

    @Jonathan Edwards highlighted the quality of the NICE team which produced the new ME/CFS guideline - but surely the system should be able to maintain standards. Reminds me of the 2007 ME/CFS guideline (to be clear I've never read it); which seemed to be the product of a particular team and an...
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    UK: NICE Longcovid guideline 2020

    It's late and I don't keep up with this but I still have (unevidenced) opinions! Surely a draft NICE guideline would be published and consulted on i.e. before it is adopted - correct? I'd like to think that the Long covid charities would be aware of the risk of being fobbed off with unevidenced...
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    Covid-19 vaccination experiences

    Family member(s) have been looking at this. Slight nuance, 28 days from the date symptoms first appeared --- i.e. rather than 28 days from a positive test ---- brought target vaccination date forward for my family member (UK).
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    The biology of coronavirus COVID-19 - including research and treatments

    I'm guessing that sampling is the biggest problem - it's pretty difficult to swab your tonsils (gag response) and I think you need to push the swab pretty far up your nostrils --- too much info!
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    New Chief Executive of NICE

    Re private sector role, only scanned but this reminds me of Dido Harding of the disastrously (from the taxpayers point of view) track and trace. I wouldn't hold out much hope re getting NICE back to its original concept - producing evidence based guidelines. I'd expect more wheeling and dealing...
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    The biology of coronavirus COVID-19 - including research and treatments

    My daughter got covid about 1 month ago and she tested (LFT) positive two weeks after the infection. She checked online and NHS workers are told not to do LFT for 3 months after an infection - so LFTs seems to give false positives, after you've been infected, i.e. as well as false negatives...
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    New Chief Executive of NICE

    Yea I vaguely recall a series of short (15 minute?) programs on Radio 4 and one looked at how you can manipulate people by showing empathy etc. and it was a cheap way of getting + ve feedback (questionnaires). So this might be the agenda - make it look like your doing something (media spin)...
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    The biology of coronavirus COVID-19 - including research and treatments

    Yea LFT is the abbreviation for lateral flow test and it misses positive infections (compared to a PCR - the gold standard test but still not 100%). Interesting that there seems to be a lag between being symptomatic and a positive LFT --- presumably PCR would be +ve in this lag period. Wonder...
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    I feel I should compliment the creative writing. Maybe Cochrane could try to live up to the mission statement rather than just saying it. Is P.R. Philippe Ravaud?
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Monetising the asset? I mean to say, look at the value of what they have created!
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    NICE and Cochrane sign collaborative agreement to deliver ‘living’ guideline recommendations

    Where to start --- 'fundraising income'? reminds me of the comment from a Doctor re the Royal College's taking in money to fund the wine cellar! Paul Garner's ain't cheap!
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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

    Been avoiding sending this reply to (Katy) NICE* --- finally got around to it. Thank you all for your comments etc. *"Katy, thank you for your response. Regarding your comment: "Each review question in the NICE guideline has its own review protocol agreed by the guideline committee. These...
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    News from Aotearoa/New Zealand and the Pacific Islands

    There's a fairly old Hornig & Lipkin study which suggested changes in cytokines with duration of illness and Ron Davis presented some data (Montoya study?) at an OMF symposium. However, I think @Jonathan Edwards may not be convinced that the cytokine data really indicates much - I think I can...
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    Covid-19 vaccines and vaccinations

    Last I heard of the medicines was negative i.e. the UK bought a load of stuff that was effective in unvaccinated people --- but in vaccinated people (most of the UK population) it isn't effective. So £500 million down the drain? I'm not sure what to make of the drugs used to treat serious...
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    Covid-19 vaccines and vaccinations

    Yea the 1918 influenza pandemic was another influenza but it took a hell of a toll. I wonder if the models these guys are working from really have enough data --- the global transmission rates are so high this virus has the opportunity to check out a lot of combinations (variants). I am too; I...
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    Covid-19 vaccines and vaccinations

    Certainly and I've had mine --- I suppose I was thinking more generally i.e. that vaccines will cease to work due to new variants, rather than decreasing immunity (with time).
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    Covid-19 vaccines and vaccinations

    EDIT see @Trish comments below - I've had my booster and I pre-booked it to get the slot immediately I was eligible. OK this time it looks like a booster will (at a population level) work but generally I'm concerned that new variants will simply make a vaccine ineffective. New variants seem to...
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    What differentiates ME/CFS from known primary mitochondrial diseases; could mitochondrial disease cause PEM?

    Not actually answering your question, but I vaguely recall something recently (months) where scientists (Oxford?) found that whole genome sequencing found underlying mitochondrial disease [EDIT - apologies just re-read this - the symptoms were very variable and not actually consistent/typical]...
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