UK CFS/ME Research Collaborative

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The UK CFS/ME Research Collaborative (CMRC) is a UK group of researchers and ME/CFS patient groups led by Professor Stephen Holgate.[1] Its launch in 2013 was covered by the Science Media Centre.[2] 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.[3] 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In May 2017, ME Research UK, who had previously been a member, announced, via Facebook, that they had withdrawn their membership.[4]

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[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.[5][6][7][8]Invest in ME compared the Collaborative unfavourably with their own Invest in ME International ME Conference,[9] whilst the Tymes Trust raised issues about rules on debating controversial issues.[10]

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."[11]

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

Conference[edit | edit source]

Minutes[edit | edit source]

Executive Board - 2018[edit | edit source]

(As per ME Association website.[12])

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),[13]
  • 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]

UK CFS/ME Research Collaborative (CMRC) - 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 the CFS/ME Research Collaborative Conference.

UK CFS/ME Research Collaborative (CMRC) - 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 the CFS/ME Research Collaborative Conference.

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.

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.