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    S4ME Q&A with Prof Chris Ponting - Question Collection Thread

    As vice-chairman of the CMRC, what steps will you be taking to try to recruit other respected doctors and scientists, as well as charities and patients organisations, with an interest in biomedical ME research who have previously been unwilling to join the CMRC because of concerns about its...
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    S4ME Q&A with Prof Chris Ponting - Question Collection Thread

    The CMRC seems to have achieved very little since its inception beyond stoking controversy and alienating patients. As someone who appears to favour a patient-focussed, biomedical approach to ME research, why have you decided to try to do that through the CMRC rather than through any of the...
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    PACE trial manuals no longer accessible

    The PACE trial manuals no longer seem to be available from the QMUL website without a log in: https://www.qmul.ac.uk/wolfson/research-projects-a-z/current-projects/pace-trial/ Does anyone have copies of the manuals they can share here?
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    BBC Newsbeat: M.E. And Me - documentary available from Tuesday 8th May, 6am

    Letter from Chalder, Crawley, McCrone, Sharpe and Wessely to newsbeat. Copied to and shared by Tina Rodwell: http://tillymoments.blogspot.com/2018/05/bbc-should-check-their-information.html
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    My interview with The Canary re. song and #MilllionsMissing

    Part two of my interview has now been published: https://www.thecanary.co/feature/2018/05/13/bob-dylans-blowin-in-the-wind-has-been-re-imagined-for-the-millions-missing-part-two/
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    My interview with The Canary re. song and #MilllionsMissing

    This is part one of my interview with The Canary about my song and the #MillionsMissing campaign. Part two will be published tomorrow: https://www.thecanary.co/feature/2018/05/12/bob-dylans-blowin-in-the-wind-has-been-re-imagined-for-the-millions-missing-part-one/ Edit: And here is part two...
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    Q&A with Prof Chris Ponting May 2018

    I think that is a little unfair, Trish. Let’s not forget that he co-signed a letter to the Independent in defence of Simon Wessely’s “pioneering research” in the field of ME/CFS, along with all the usual suspects...
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    sodium cromoglicate: UK prescription

    Has anyone in the UK been prescribed sodium cromoglicate for MCAS? Please can you tell me exactly what you were prescribed and whether it was private or NHS prescription? Thank you. Please feel free to send a private message if preferred. Moderators - please move this if I've posted it in the...
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    A song for ME: Blowin' in the wind

    I've now uploaded the video directly to Facebook. If you are on Facebook, and especially if you're an admin for a Facebook page, please share it: Thanks.
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    A song for ME: Blowin' in the wind

    Yes, please share as widely as possible, on social media and beyond. We need the message to reach as many people as possible.
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    A song for ME: Blowin' in the wind

    Some of you may recall that a few months ago I was asking for volunteers to sing in the chorus of an alternative version of Blowin' in the Wind that I had written (https://www.s4me.info/threads/protest-song-about-me-angel-on-the-water.1891/) Here it is the finished result: I am hoping that...
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    BBC Radio York, Jonathan Cowap, 45 min segment on ME

    His name is Chris Afford: https://twitter.com/MorningCoffee75 I know him well. He's very knowledgeable and is doing a lot of good work, including organising and paying for a free screening of Unrest in Scarborough on 8 May: [Edited to add: If anyone knows of anyone who might be able to...
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    Michael Sharpe skewered by @JohntheJack on Twitter

    Dear Sam, I am writing to formally state that I do not have any conflicts of interest of financial or other nature regarding my communications with Professor Sharpe. Furthermore, I should like to take this opportunity to emphasise that despite my previous activities in this field I am in a...
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    Michael Sharpe skewered by @JohntheJack on Twitter

    And this is another thread: I will try to get him to answer some of the unanswered questions.
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    Michael Sharpe skewered by @JohntheJack on Twitter

    Some of this has been posted but here are my recent exchanges with Prof Sharpe:
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    Article by Fiona Fox (SMC) for the Revolutionary Communist Party (c. 1996)

    Following the publication of the Forward-ME group letter to the Science Media Centre (SMC) to (http://www.meassociation.org.uk/2018/04/forward-me-to-science-media-centre-retract-and-replace-your-factsheet-on-cfs-me-05-april-2018/) @JohnTheJack helped me to track down an old article written by...
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    PACE trial TSC and TMG minutes released

    @Lucibee I feel you’re on to something although I’ve not managed to follow all the details. I think these issues with the step test need a wider airing and I’ve not seen them discussed elsewhere. Would you be willing to try putting it all together in an article?
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    PACE trial TSC and TMG minutes released

    It might be wise to link to this post when referencing cardigans in future. Similarly, I winced when I first read one of your references to “the girlies”. It was only later, when I read something else you’d written that I realised you were parodying those with sexist views rather than being...
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    PACE trial TSC and TMG minutes released

    Thank you, Clare and Sonya (@Action for M.E.) Whatever the details about who made the decision and what discussions took place, it seems clear that AfME made a serious error of judgement in agreeing to drop actigraphy as an outcome measure. Had actigraphy been kept it seems highly probable that...
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