UK CFS/ME Research Collaborative

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. 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. Since 2014, the collaborative sponsors a 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 Duke of Kent, in his role as patron of the ME Association, and the Countess of Mar, a Patron of ME Research UK.

ME Research UK in their write up of the launch 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 with quotes from Stephen Holgate & Sonya Chowdhury of Action for ME expressing great hope for the CMRC being a “step change”.

A blog 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. Patient groups represented include the ME Association, Action for ME, the Association of Young People with ME and the M.E. Trust.

In May 2017, ME Research UK, who had previously been a member, announced, via Facebook, that they had withdrawn their membership.

A number of patient groups and charities have declined to join. These include Invest in ME, Tymes Trust, and the 25 Percent ME Group.

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. 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 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“

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."

The involvement of the Science Media Centre has also been questioned. See Science Media Centre: Criticism.

Conference

Main article: 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, 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

• 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
• New HOME of all CFS/ME Research collaborative minutes

Executive Board - 2018

(As per ME Association website.)

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),
• 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 – 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

• UK CFS/M.E. Research Collaborative (hosted by Action for ME)

Learn more

• 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

• Grand Challenge
• CFS/ME Research Collaborative Conference