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    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    Just to note that my powers of prediction remain undiminished :laugh:
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    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    Yes. Also, depending on what the public relations thinking is (if any) at NICE, there may be a wish to take the best opportunity for a media splash, in which case avoiding the Budget and COP26 would be essential to escape being drowned by political blancmange, young people trying at least to...
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    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    There's a threatened JR for which no claim has yet been filed and which following the announcements post the round table is redundant in its own terms, at least as presented in the letter before claim. As such it simply wouldn't get past the first stage of JR.
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    Publication of the NICE ME/CFS guideline after the pause (comment starting from the announcement of 20 October 2021)

    Not sure I have all that much a grasp on anything - but: While NICE has a duty publish and promote its Guidelines it has no authority to make anyone take notice. It is a mistake to believe that the either the NHS or the Public Health services in the UK are constructed in any sort of joined up...
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    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    The Journal of General Internal Medicine[1][2] is the official journal of the Society of General Internal Medicine[3] The SGIM seems a mostly US based entity and has no obvious links to the UK BPS group, though its 3000+ members are said to be international. When the article is eventually...
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    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    Perhaps a function of the size of the integrated hospital system in the UK - https://www.jrcptb.org.uk/specialties/general-internal-medicine-gim
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    TV Program: Clapped Out: Is the NHS Broken?, Dispatches, Channel 4, UK

    https://threadreaderapp.com/thread/1451095654995005445.html Sir Chris Ham Co-Chair NHS Assembly, Chair Coventry and Warwickshire ICS, NED Royal Free London FT, Emeritus Prof Uni of Birmingham. Health policy and management wonk
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    TV Program: Clapped Out: Is the NHS Broken?, Dispatches, Channel 4, UK

    I'm afraid this just repeats the lie that it's possible to get ever more efficiency from a low investment system that is facing ever increasing demand. The NHS has been for almost all it's existence the most efficient health system in the world for any comparable country. The US which has the...
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    United Kingdom: ME Association governance issues

    That's the problem with trying to deal with an issue like that on Social Media - the side that feels it is under attack invariably goes into defence mode. I'd suggest the only way - and it may not be successful - to have Findlay disaccepted, will be via letters/email to the Chair setting out...
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    World ME Alliance, was previously IAFME: International Alliance for ME

    This is of no consequence and perhaps it is a sound representational image - but I hate that header photo*. Can't we for once be represented as being active despite the pain (or whatever) - and not perpetually passive ? *apologies to the subject who is very striking and as a photo it is a...
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    Bristol Chronic Fatigue Syndrome/ME Service; Bristol M.E. Service - Peter Gladwell

    There's Orwellian renaming where the objective involves various forms of deception, I guess one might argue here that deception is being achieved by appropriation of a name that has validity, while maintaining an invalid service. However I think the speed with which this has been done probably...
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    Brain fog, cognitive dysfunction

    Put that man in a room with a few pregnant persons so he can persuade them of the error of their beliefs. And they of his.
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    Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Neurological Entity?, 2021, Gandasegui et al

    Maybe, just maybe, this is one of those papers where in 10 or more years time it will be possible to look back and say, at least for neurology, that is where it all began to change.
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    (Daily Telegraph) “How I became a target for the ME militants” by Dr Michael Fitzpatrick

    Judgement is here: http://www.bailii.org/ew/cases/EWHC/Admin/2009/452.html I think item 34 answers your questions but I've only skim read today for the first time in years. The whole approach of the claimants was pretty much a 'how not to' example of seeking JR. As a wholly off topic aside -...
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    (Daily Telegraph) “How I became a target for the ME militants” by Dr Michael Fitzpatrick

    By strange coincidence the Sunday Telegraph pre pandemic circulation numbers were exactly the same as the top figure for UK ME/CFS prevalence. We don't know how many STel's are actually sold now because its owners pulled out of the scheme that has measured newspaper sales for the last half...
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    The Presentation of ME/CFS Is Not Influenced by the Presence or Absence of Joint Hypermobility, 2021, Vogel, Rowe et al

    Are they just using JH as a proxy for EDS ? It would be unsurprising if some EDS cases were swept up by ME/CFS diagnostic criteria but they aren't going to find statistical evidence in small studies.
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    Yet another NHS reform !

    Maybe partisan but the critique seems sound - just posting for info: https://www.crowdfunder.co.uk/scrap-nhs-bill - also unsure where else to post this so putting it here: https://www.openrightsgroup.org/blog/why-on-earth-is-the-government-mucking-about-with-our-privacy-laws/
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    UK Action for ME - policies, actions and publications - discussion thread

    There's very large variation across the 3rd Sector (the term 'Charity' has so much historical and moral baggage). Some 3rd sector pay is abysmal, especially where the comparator jobs are in the private sector (care etc). Trade Unions were once very slow to recruit in 3rd Sector work places but...
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    UK Action for ME - policies, actions and publications - discussion thread

    One would hope it doesn't matter, though I'm not sure such an imbalance in any workforce that has interaction with a membership or the public would be healthy as a sustained feature. Third sector employment is heavily weighted toward women - about a 3:1 imbalance, UK public sector (including...
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    United Kingdom: Action for ME (AfME) news

    Only just catching up with this. An object lesson in how not to make a complaint to the Charity Commission.
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