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    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    There are a couple of mentions of 'goals', including under the section on energy management: And in the section on CBT: Plus the CBT recommendation separated off in the section on severe and very severe: The following was one of the S4ME stakeholder comments on the draft guideline re goals...
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    NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion thread

    There is also this excerpt from a comment from the Royal College of Physicians which appears supportive of the Lightning Process. It is part of larger comment on the types of exercise programmes the draft guideline recommended should not be offered, which starts on page 757 of Table 2. Bolding...
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    UK - Resources for help getting food during quarantine and other supermarket related problems

    There are some reports on Twitter but Ocado don't seem to have any answers yet. Their Twitter team clock off at 8pm.
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    UK - Resources for help getting food during quarantine and other supermarket related problems

    Merged thread Tesco is down for a second day due to hack attempt I've just seen this on the news and posting here in case it affects anyone who wasn't yet aware. At the moment Tesco are saying there is no reason to believe that this issue impacts customer data. If you need to cancel or edit a...
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    House of Lords: Govt discussions with NICE on ME/CFS (Main Chamber) Tuesday, 12 October 2021

    Hansard is a “substantially verbatim” report of what is said in Parliament. Members’ words are recorded, and then edited to remove repetitions and obvious mistakes, albeit without taking away from the meaning of what is said. https://hansard.parliament.uk/about
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    United Kingdom: ME Association governance issues

    Exerpt from the Toronto Globe and Mail, 8 March 2008. Words by Zoe Cormier. Hosted on the MEA website. https://meassociation.org.uk/2008/03/a-canadian-take-on-the-lightning-process/
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    (Daily Telegraph) “How I became a target for the ME militants” by Dr Michael Fitzpatrick

    The ratio decidendi is the rationale for a decision in a case, which is binding as precedent on decisions made in lower courts. Obiter dicta are other things said by a judge that do not form part of the ratio decidendi, so things said by the way or 'in passing'. Stare decisis is the principle by...
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    A general thread on the PACE trial!

    According to Vink in JHP commentary, PACE trial authors continue to ignore their own null effect, at trial registration in 2003 it was less than 75, before the trial started it was changed to 60 or less and then, during the trial, it was changed to 65 or less.
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    History of NICE decision to set up 2020 Committee

    I don't think Wilshire et al was published until 2018.
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    History of NICE decision to set up 2020 Committee

    https://meassociation.org.uk/2011/03/no-change-announced-to-nice-guideline-on-mecfs-next-review-will-be-august-2013/
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    History of NICE decision to set up 2020 Committee

    There's possibly a bit more info here. Charles might be a good person to check in with if there is time. https://meassociation.org.uk/2017/06/the-nice-guideline-saga-how-we-got-to-where-we-are-24-june-2017/
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    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    Coronavirus: Young long Covid sufferers lead vaccine drive 23 August 2021 https://www.bbc.co.uk/news/uk-58301011
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    Survey:Improving NICE guidance

    These are excerpts from section 9 (Writing the guideline) of Developing NICE guidelines: the manual Process and methods [PMG20] https://www.nice.org.uk/process/pmg20/chapter/writing-the-guideline#wording-the-recommendations
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    UK Action for ME - policies, actions and publications - discussion thread

    Apparently Dr David Strain was appointed to the position in June: https://www.actionforme.org.uk/get-information/about-us/president-patrons-and-advisors/
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    UK: NHS data sharing – deadline imminent

    GP Data for Planning and Research: Letter from Parliamentary Under Secretary of State for Health and Social Care to general practices in England - 19 July 2021...
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    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Dr Hng made a group submission on the draft guideline in the appropriate consultation period. This recent letter says it is lodged on behalf of eight stakeholders, but a ninth signatory is listed as 'Dr HNG Group Submission, with and on behalf of Doctors with M.E.' I am surmising Doctors...
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    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Dr Hng made a submission on behalf of several individuals during the draft guideline consultation period (I infer the same group is what is referred to by 'Dr Hng Group Submission' in this letter). Presumably as a group that doesn't constitute an organisation or charity, they wouldn't have...
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    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    The letter says it is lodged on behalf of the eight stakeholders listed. 'Dr HNG Group Submission, with and on behalf of Doctors with M.E.' is the ninth entry on that list.
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    [Blog] Beyond the NICE guideline: MEComms© and the case for a public inquiry

    I'd be interested in the answer to this. So far as I know, it isn't possible to claim copyright in relation to names; I would have thought trademark would be the appropriate form of intellectual property right. If the intention is to flag that the idea for forming a coalition comprised of...
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    NICE ME/CFS draft guideline - publication dates and delays 2020

    It looks like it. The Register of Interests has an entry for the tweet: Interest arose: 6 October 2020, declared October 2020. Direct non-financial.
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