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...
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...
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?
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
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/
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...
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...
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...
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.
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...
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...
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...
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...
@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?
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...
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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