UK CFS/ME Research Collaborative

2019-01-14T15:16:35Z

Juludw:I added the M.E. Trust as a member

The '''UK CFS/ME Research Collaborative''' (CMRC) is a UK group of researchers and [[ME/CFS]] patient groups 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> Its 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]].

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In May 2017, [[ME Research UK]], who had previously been a member, announced, via Facebook, that they had withdrawn their membership.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]].

== 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.

==The Grand Challenge==
The [[Grand Challenge]] is a UK study announced in 2015 and aiming to collect a large sample size (10,000+) of data from people with M.E.

==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 [[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}}

==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]

==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==
<references />
[[Category:Research initiatives]]
[[Category:British research initiatives]]

MEpedia - User contributions [en]

UK CFS/ME Research Collaborative