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UK CFS/ME Research Collaborative
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The '''UK CFS/ME Research Collaborative''' (CMRC) is a group of British researchers and [[ME/CFS]] patient groups with some connection to U.K. funders who host & attend the meetings. It was led by Professor [[Stephen Holgate]].<ref>[http://www.meassociation.org.uk/2013/10/uk-mecfs-research-collaborative-executive-board-minutes-of-meeting-held-on-7-october-2013/ "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"]</ref> but is now apparently led by Dr David Strain following Professor Stephen Holgate stepping down in 2020. It’s launch in 2013 was covered by the [[Science Media Centre]].<ref>[http://www.sciencemediacentre.org/chronic-fatigue-syndrome-unravelling-the-controversy/ Chronic Fatigue Syndrome – unraveling the controversy]</ref> Since 2014, the collaborative sponsors a [[CFS/ME Research Collaborative Conference|conference on ME/CFS research]]. == Aims == The collaborative was set up with the intention of: *providing a mechanism for M.E. charities, researchers and clinicians to work together in a coordinated and collaborative way, *increasing awareness of M.E. within the research community, *highlighting priorities for research funding to assist funders such as the [[Medical Research Council]] *increasing funding for M.E. research. ==Launch & expressed hopes== The UK CFS/ME Research Collaborative (CMRC) was launched on Monday April 22nd 2013 at the Wellcome Collection in central London. It was attended by the the [http://www.royal.gov.uk/thecurrentroyalfamily/thedukeofkent/overview.aspx Duke of Kent], in his role as patron of the ME Association, and the [http://www.parliament.uk/biographies/lords/countess-of-mar/1861 Countess of Mar], a Patron of ME Research UK. [[ME Research UK]] in their write up of the launch<ref>https://www.meresearch.org.uk/uk-research-collaborative/</ref> stated “Our hope is that the success of the ‘UK Respiratory Research Collaborative’ – which saw grant funding for respiratory medicine research increase 10-fold between 2005 and 2012 – can be dramatically reprised for ME/CFS, which has been a poor orphan in research terms for far too long.” The BMJ published an article<ref>https://www.bmj.com/content/346/bmj.f2630</ref> with quotes from [[Stephen Holgate]] & [[Sonya Chowdhury]] of [[Action for ME]] expressing great hope for the CMRC being a “step change”. A blog<ref>https://meassociation.org.uk/2013/06/uk-research-collaborative-means-business-think-piece-by-simon-mcgrath-4-june-2013/</ref> published by [[The ME Association]], whilst noting some controversy over the big tent approach, was also very positive. Dr [[Charles Shepherd]] is quoted as saying it was “a very big and potentially extremely powerful tent”. ==Membership== Membership is open to researchers, health care professionals, charities and patients. Associate membership is free, enabling patients to receive updates & take part in sessions at the conference.<ref>[http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ Becoming a member]</ref> Patient groups represented include the [[ME Association]], [[Action for ME]], the [[Association of Young People with ME]] and the [https://www.metrust.org.uk M.E. Trust]. In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.<ref>[ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]</ref> A number of patient groups and charities have declined to join. These include [[Invest in ME]], [[Tymes Trust]], and the [[25 Percent ME Group]].{{citation needed}} ==The Grand Challenge== The [[Grand Challenge]] was a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E. I ==Criticism== The collaborative has been criticised for not using [[post-exertional malaise]] as a mandatory symptom in research.<ref>[http://www.stonebird.co.uk/CMRC.pdf Compromise is not acceptable - By: Stonebird]</ref><ref>[http://www.meassociation.org.uk/2015/10/post-exertional-malaise-in-mecfs-medical-research-council-announces-new-neuroimaging-research-16-october-2015/ Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd]</ref><ref>[http://www.shoutoutaboutme.com/advocacy/whats-wrong-with-the-uk-cfsme-research-collaborative/ Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan]</ref><ref>[http://phoenixrising.me/archives/16786 Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath]</ref> [[Invest in ME]] compared the Collaborative unfavourably with their own [[Invest in ME International ME Conference]],<ref>[http://www.investinme.org/IIME-Newslet-1304-01.htm "A tale of two collaboratives"]</ref> whilst the [[Tymes Trust]] raised issues about rules on debating controversial issues.<ref>[https://www.facebook.com/tymestrust/posts/1494167207535083 "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"]</ref> The initial CMRC was set up with a controversial gagging clause, later removed, with the supposed aim of preventing abuse & harassment. One article says: “The charter has already been tested a couple of times, says Holgate, who gave the aggressors a choice: apologise or leave. He’s even suggested that he’ll disband the collaborative completely if all parties don’t play by the rules. “We set up the charter to protect researchers; anybody who joins us can’t abuse or upset that trust,” he says. “There is power in this to stop silly publicity which is quite destructive“<ref>{{Cite web|url=https://thewire.in/health/fighting-over-fatigue-will-this-chronic-syndrome-ever-be-taken-seriously | title = Fighting Over Fatigue: Will This Chronic Syndrome Ever Be Taken Seriously? | last = | first = | author-link =| date = 2015 | website = The Wire|archive-url=|archive-date=|url-status=|access-date=2021-08-17}}</ref> The [[25 Percent ME Group]] stated in declining membership, "It is wholly unacceptable for people with chronic fatigue and mental health issues to be included in research for [[Myalgic Encephalomyelitis]] and for people with [[Myalgic Encephalomyelitis]] to be used for [[Chronic Fatigue]] research."<ref>[http://www.25megroup.org/info_news.html#CMRC STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013]</ref> The involvement of the [[Science Media Centre]] has also been questioned. See [[Science Media Centre]]: [http://me-pedia.org/wiki/Science_Media_Centre#Criticism Criticism]. ==Conference== ''{{main article|page_name =CFS/ME Research Collaborative Conference}}'' ==Research & projects associated with the CMRC== 1) [[DecodeME]] - A Very large genetics study of 20 000 pwME costing £3.2 million. It was funded by the [[MRC]] and [[NIHR]] in 2020 and is due to complete in 2024. 2) [[ME/CFS Priority Setting Partnership]] ==Other Activities== *2016, [https://meassociation.org.uk/wp-content/uploads/mecfs-research-funding-report-2016.pdf The CMRC commissioned a report into ME/CFS research funding] This assessed global & UK ME/CFS funding over a ten year period 2006-2016. ME/CFS funding was also compared (unfavourably) to other illnesses for context. The investigation was carried out by a group called UberResearch & by [[Sonya Chowdhury]] CEO of [[Action for ME]]. Sonya Chowdhury gave a ten minute presentation of the reports findings at the 2016 CMRC conference. ==Minutes== *[https://www.meassociation.org.uk/wp-content/uploads/CMRC-Draft-Minutes-10.07.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018] *[https://www.actionforme.org.uk/uploads/images/2018/05/Draft_Chair_approved_mins_24.4.18.pdf DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018] *[https://www.actionforme.org.uk/uploads/pdfs/draft-crmc-minutes-15-01-16.pdf DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016] *[https://www.actionforme.org.uk/uploads/pdfs/CMRC-draft-minutes-111115.pdf DRAFT Minutes of CMRC Meeting 11 November 2015] *[https://meassociation.org.uk/research/cfsme-research-collaborative/cmrc-meeting-summaries/ New HOME of all CFS/ME Research collaborative minutes] ==Executive Board - 2018== (As per [[ME Association]] website.<ref>[http://www.meassociation.org.uk/research/cfsme-research-collaborative/cmrc-executive-committee-becoming-a-member/ CMRC Executive Board and Becoming a Member - ME Association]</ref>) ===Executive board members:=== *Chair, Professor [[Stephen Holgate]], (University of Southampton) *Deputy Chair, Professor [[Chris Ponting]] (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh) *Professor [[Patrick Chinnery]] (MRC Mitochondrial Biology Unit, and Dept. of Clinical Neurosciences, Cambridge University), *Dr [[Joanna Elson]] (Mitochondrial Research Group, Institute of Genetic Medicine, University of Newcastle), *Dr [[Neil Harrison]] (Wellcome Clinician Scientist and Reader in Neuropsychiatry, Research Lead for the Department of Neuroscience, Sussex University), *Prof [[Paul Little]] (Professor of Primary Care Research within Medicine, University of Southampton), *Professor [[Carmine Pariante]] (Biological Psychiatry and Head of section, King’s College London), *Professor [[Colin Smith]] (Functional Genomics, Brighton University), *[[Sonya Chowdhury]], CEO, Action for M.E. *Dr [[Charles Shepherd]], Hon. Medical Adviser, The [[ME Association]] *Chris Macdonald/Craig Bullock ([[Arthritis Research UK]]), *CMRC Patient Reference Group, *Michael Dalrymple (MRC-Technology), *Mark Edwards (Lay member with pharma/industry experience),<ref>[https://uk.linkedin.com/in/edwardsmark2? Mark Edwards - Linked In]</ref> *Lars Erwig (Senior Director Discovery Medicine, [[GSK]]), *Mark Jones ([[UCB Pharma]]), ===Official observers:=== *Ana Atunes-Martin (Programme Manager for population sciences and public health, MRC), *Dr [[Gabrielle Murphy]] ([[BACME]]), *Representative from the [[National Institute for Health Research]] (NIHR). ==Executive Board - 2017== *[[Stephen Holgate]] (Chair) *[[Esther Crawley]] (Vice Chair) *[[Sonya Chowdhury]], CEO, [[Action for ME]] *James Brodie – [[GW Pharma|GWPharma]] *[[Mike Dalrymple]] (MRCT) *Mark Edwards – EMIG *[[Mark J. Edwards|Mark J Edwards]] *[[Zoe Gotts]], Northumbria University *Neeha Isaar-Brown, [[Medical Research Council]] *Mark Jones - [[UCB Pharma]] *[[Claire Kidgell]] *[[Paul Little]], Southampton University *[[Gabrielle Murphy]] *[[Jen McKendrick]] *[[Julia Newton]], Newcastle University *[[Carmine Pariante]] *[[Hugh Perry]], Southampton University *[[Chris Ponting]] *[[Charles Shepherd]], [[ME Association]] *[[Raliza Stoyanova]] *[[Edward Sykes]], [[Science Media Centre]] *Allison Wallace, Wellcome Trust observer *[[Des Walsh]] *Mary-Jane Willow, [[Association of Young People with M.E.]] ==Online presence== *[https://www.actionforme.org.uk/research/uk-cfsme-collaborative/ UK CFS/M.E. Research Collaborative] (hosted by [[Action for ME]]) ==Learn more== *2016, [http://phoenixrising.me/archives/27889 The Power and Pitfalls of Omics:] [[George Davey Smith]]’s storming talk at ME/CFS conference (Pt 1 of 2) *2016, [https://www.actionforme.org.uk/news/ceo-blog-prof-george-davey-smith-on-the-grand-challenge/ CEO blog: Prof] [[George Davey Smith]] on the [[Grand Challenge]] *2013, [http://www.meresearch.org.uk/news/uk-research-collaborative/ UK Research Collaborative] *2013, [http://www.meassociation.org.uk/research2015/cfsme-research-collaborative/ CFS/ME Research Collaborative] ==See also== *[[Grand Challenge]] *[[CFS/ME Research Collaborative Conference]] == References == {{Reflist}} [[Category:Research initiatives]] [[Category:British research initiatives]]
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