United Kingdom News
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The UK CFS/ME Research Collaborative to livestream AGM on 27 April
The 2016 Annual General Meeting of the UK CFS/ME Research Collaborative (CMRC) will be livestreamed on Wednesday 27 April, from 2.45 pm to 3.30 pm British Summer Time. Viewers must preregister. The agenda of the AGM is as follows: Welcome and apologies Annual report 2014-15 Charter revisions/approval Plans for 2015-16 Membership of the Board Any other business
British doctor known for defending children prohibited from treating ME patients
On 20 April, the UK’s General Medical Council (GMC) imposed limits on the medical license of Dr Nigel Speight, well known for his work in protecting children with ME/CFS against inappropriate psychological intervention and removal from their families. The limits come after a complaint from Esther Crawley, medical advisor to the Association of Young People with ME.
Tell your Wales, Northern Ireland or Scotland election candidate that M.E. Matters Now!
Do you live in Wales, Northern Ireland or Scotland? Can you help push M.E. up the political agenda by sharing the M.E. Matters Now campaign manifesto?
Sense About Statistics says: PACE trial doomed by flaws
Dr Rebecca Goldin, blogging for Sense About Statistics, has said that flaws in the design of the PACE trial “were enough to doom its results from the start”. Her 7,000-word post described the study’s design and the extensive changes to the planned analyses. Dr Goldin, who is the Director of the organisation, writes, “The study
George Davey Smith to patients: “new era” for ME/CFS research
In an invited post on UK charity Action for ME’s blog, Professor George Davey Smith of Bristol University has told patients that the UK’s planned, major ME/CFS project, the Grand Challenge could “herald a new era in ME research”. Action for ME’s CEO, Sonya Chowdhury, described the project, which was announced at October’s UK CFS/ME
CureME research news email service launches
Swedish ME patient Kasper Ezelius has announced the launch of an email service called CureME that will allow subscribers to both post and receive news on ME/CFS. Subscribers can choose to receive research news only, which is the main focus of the site. Registration is free. The list replaces Co-cure, an ME/CS information
#MEAction delivers Lancet PACE petition, makes Wall Street Journal
#MEAction delivers Lancet PACE petition, makes Wall Street Journal #MEAction has sent an 11,000-signature petition to The Lancet, calling for the retraction of “misleading” analyses and claims published in a 2011 PACE trial paper concerning the effectiveness of cognitive behavioural therapy and graded exercise therapy for ME/CFS. Copies of the petition, which when printed were
Ten organisations call for PACE data release, AYME refuses
Ten organisations so far have joined ME/CFS patient Clark Ellis’s call to Queen Mary University of London (QMUL) to release data from the PACE trial but one group has refused. In early February, Mr Ellis asked seven major UK ME/CFS charities to write to ask QMUL to abandon their tribunal appeal against the UK Information
Progress In ME/CFS Patient Advocacy: Overcoming The Militant Meme & Why We Must Keep Evolving
What is the role of outrage in activism? “Anger is justified but, anger can be used against you. Anger can be misplaced or anger can be the flame that fuels the kind of passion that brings about great change.”
The power and pitfalls of omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath’s two-part blog. Here’s Part 1 … Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference that focused on bigger, better, smarter approaches to research. Since then, Davey
PACE Trial’s Forbidden Fruits: The Fruit of Your Labour
A look at what you achieved by asking charities to call on the anonymized PACE trial data to be released, and what this means going forward.
The Unpredictability Factor
Running on the idea that visual representations of life with M.E. can – as accurately as possible – portray the depth, the range, the severity and the unpredictability of the condition, I am pleased to say that I am currently embarking on Change For M.E. Change For Us’ next visual project….