UK CFS/ME Research Collaborative
The UK CFS/ME Research Collaborative (CMRC) is a UK group of researchers and ME/CFS patient groups led by Professor Stephen Holgate. Its launch in 2013 was covered by the Science Media Centre. Since 2014, the collaborative sponsors a 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. Patient groups represented include the ME Association, Action for ME, the Association of Young People with ME and the M.E. Trust.
Aims[edit | edit source]
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[edit | edit source]
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[edit | edit source]
The collaborative has been criticised for not using post-exertional malaise as a mandatory symptom in research.Invest in ME compared the Collaborative unfavourably with their own Invest in ME International ME Conference, whilst the Tymes Trust raised issues about rules on debating controversial issues.
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."
Conference[edit | edit source]
Minutes[edit | edit source]
- DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting 10 July 2018
- DRAFT Minutes of UK CFS/ME Research Collaborative Executive Board Meeting, 24 April 2018
- DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016
- DRAFT Minutes of CMRC Meeting 11 November 2015
Executive Board - 2018[edit | edit source]
Executive board members:[edit | edit source]
- 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),
- Lars Erwig (Senior Director Discovery Medicine, GSK),
- Mark Jones (UCB Pharma),
Official observers:[edit | edit source]
- 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[edit | edit source]
- Stephen Holgate (Chair)
- Esther Crawley (Vice Chair)
- Sonya Chowdhury, CEO, Action for ME
- James Brodie – GWPharma
- Mike Dalrymple (MRCT)
- Mark Edwards – EMIG
- 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[edit | edit source]
Learn more[edit | edit source]
- 2016, The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference (Pt 1 of 2)
- 2016, CEO blog: Prof George Davey Smith on the Grand Challenge
- 2013, UK Research Collaborative
- 2013, CFS/ME Research Collaborative
See also[edit | edit source]
References[edit | edit source]
- "UK ME/CFS Research Collaborative executive board | summary of meeting held on 7 October 2013"
- Chronic Fatigue Syndrome – unraveling the controversy
- Becoming a member
- [ME Research UK & UK CFS/ME Research Collaborative ME Research UK - Facebook]
- Compromise is not acceptable - By: Stonebird
- Post-exertional malaise in ME/CFS | Medical Research Council announces new neuroimaging research | 16 October 2015 - ME Association - Dr. Charles Shepherd
- Rocky Start for CFS/ME Collaborative - Shout Out About ME - By: Russell Logan
- Launch of inclusive UK CFS/ME Research Collaborative - By: Simon McGrath
- "A tale of two collaboratives"
- "BEHIND THE SCENES: SETTING UP THE UK CFS/ME RESEARCH COLLABORATIVE (UK CMRC)"
- STATEMENT FROM THE 25% ME GROUP REGARDING THE CFS/ME RESEARCH COLLABORATIVE CHARTER (CMRC) MAY 2013
- CMRC Executive Board and Becoming a Member - ME Association
- Mark Edwards - Linked In
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
mitochondria - Important parts of the biological cell, with each mitochondrion encased within a mitochondrial membrane. Mitochondria are best known for their role in energy production, earning them the nickname "the powerhouse of the cell". Mitochondria also participate in the detection of threats and the response to these threats. One of the responses to threats orchestrated by mitochondria is apoptosis, a cell suicide program used by cells when the threat can not be eliminated.
Action for ME (AfME) - Action for ME is a British non-profit organization that was set up in 1987 as The M.E. Action Campaign. Its founders were Martin Lev, Sue Findlay and Clare Francis. In September 1993 it changed its name and logo to Action for ME and Chronic Fatigue. It then changed its name in 1993 to Action for ME.