UK CFS/ME Research Collaborative

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

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.[1] 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.[2] Since 2014, the collaborative sponsors a conference on ME/CFS research.

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.

Launch & expressed hopes[edit | edit source]

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[3] 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[4] with quotes from Stephen Holgate & Sonya Chowdhury of Action for ME expressing great hope for the CMRC being a “step change”.

A blog[5] 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[edit | edit source]

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.[6] 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In May 2017, ME Research UK, who had previously been a member, announced, via Facebook, that they had withdrawn their membership.[7]

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[edit | edit source]

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[edit | edit source]

The collaborative has been criticised for not using post-exertional malaise as a mandatory symptom in research.[8][9][10][11] Invest in ME compared the Collaborative unfavourably with their own Invest in ME International ME Conference,[12] whilst the Tymes Trust raised issues about rules on debating controversial issues.[13] 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“[14]

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."[15]

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

Conference[edit | edit source]

Research & projects associated with the CMRC[edit | edit source]

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[edit | edit source]

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[edit | edit source]

Executive Board - 2018[edit | edit source]

(As per ME Association website.[16])

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),[17]
  • Lars Erwig (Senior Director Discovery Medicine, GSK),
  • Mark Jones (UCB Pharma),

Official observers:[edit | edit source]

Executive Board - 2017[edit | edit source]

Online presence[edit | edit source]

Learn more[edit | edit source]

See also[edit | edit source]

References[edit | edit source]