UK CFS/ME Research Collaborative

The UK CFS/ME Research Collaborative (CMRC) is a group of researchers and ME/CFS patient groups in the UK. It is led by Professor Stephen Holgate. It was launched in 2013 and the launch was covered by the Science Media Centre.

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, ME Research UK, Action for ME and the Association of Young People with ME.

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. Invest in ME compared the Collaborative unfavourably with their own Invest in 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."

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

2016
The 2016 conference was held at Novotel Hotel near Newcastle Airport on Wednesday 28 and Thursday 29 September 2016. Link to UK CFS/ME Research Collaborative 3rd Annual Science Conference Programme

Speakers include: Prof Stephen Holgate, Dr David Patrick, Dr Zaher Nahle, Prof George Davey Smith, Prof Caroline Relton, Prof David Ford, Prof Paul Little, Prof Tom Whalley, Opal Wesbster-Philip, Victoria Strassheim, Dr Lesley Kavi, Prof Julia Newton, Sonya Chowdhury, Dr Neha Issar-Brown, Dr Lindsay Keir, Dr Julius Bourke, Andreas Finkelmeyer, Andrea Polli, Dr Sarah Knight, Dr Esther Crawley, Dr Juliet Chenery-Robson, and Dr Jo Elson.

Speakers

 * Prof Stephen Holgate - Welcome and Closing
 * Dr. Jose Montoya - Keynote Presentation:  Stanford ME/CFS Collaboration: Collaboration, Innovation & Discovery
 * Whitney General - Neural correlates of fatigue: a voxel-based morphometric MRI study of CFS/ME
 * Andreas Finkelmeyer - Brain white matter hyper intensities are not a common finding in CFS
 * Dr Kirstie Haywood - Patient reported outcome measures
 * Prof Julia Newton and Prof Chris Macdonald - Fatigue matters
 * Dr James Frith - Autonomic Nervous System
 * Prof Richard Reynolds - Neuropathology
 * Dr Esther Crawley - Clinical Trials and The epidemiology of CFS/ME in adolescence
 * Prof Liz Perkins - Health & Social Policy Research and M.E.
 * Dr Mark Edwards - Imaging the Neural Correlates of Post-Exertional Malaise in CFS/ME
 * Prof Fai Ng - Identifying the biological fingerprints of fatigue
 * Alice Russell - Persistent fatigue induced by Interferon-alpha: a new immunological model for CFS
 * Prof Julia Newton - Understanding the pathogenesis of autonomic dysfunction in CFS and its relationship with cognitive impairment and Cardiac iodine-123-meta-iodo-benzylguanidine uptake in CFS associates with autonomic function and fatigue severity and Reduced cardiac volumes in CFS associated with plasma volume but not length of disease
 * Prof Jo Nijs - Autonomic Nervous System in CFS/ME
 * Dr Øystein Fluge - Rituximab Trial
 * Dr Caroline Strachan - Post viral CFS/ME patients have normal levels of B cell populations
 * Dr Simon Collin - Cohort Profile: The Collaborative on Fatigue Following Infection (COFFI)
 * Prof Jim Horne - Sleep and CFS/ME
 * Rebecca Lambson - Assignable causes for fatigue in Primary Sjögren’s syndrome: data from the UK primary Sjögren’s syndrome registry
 * Eva Stormorken - From healthy to being ill with post-infectious fatigue syndrome: a qualitative content analysis of illness trajectory
 * Prof George Davey Smith - The bigger picture: big data, genomics, epigenetics and metabolomics

2016
The 2016 UK CFS/ME Research Collaborative was held 28-29 September 2016. Link to the 33 page conference report.


 * UK CMRC Conference 2016 part 1/10
 * UK CMRC Conference 2016 part 2/10
 * UK CMRC Conference 2016 part 3/10
 * UK CMRC Conference 2016 part 4/10
 * UK CMRC Conference 2016 part 5/10
 * UK CMRC Conference 2016 part 6/10
 * UK CMRC Conference 2016 part 7/10
 * UK CMRC Conference 2016 part 8/10
 * UK CMRC Conference 2016 part 9/10
 * UK CMRC Conference 2016 part 10/10

2015
The 2015 UK CFS/ME Research Collaborative was held 13-14 Oct 2015. Link to the full 44 page conference report.


 * UK CFS/M.E. Research Collaborative Science Conference Day 1, Part 1/3
 * UK CFS/M.E. Research Collaborative Science Conference Day 1, Part 2/3
 * UK CFS/M.E. Research Collaborative science conference Day 1 Part 3/3
 * UK CFS/M.E. Research Collaborative science conference Day 2 Part 1
 * UK CFS/M.E. Research Collaborative science conference Day 2 Part 2
 * UK CFS/M.E. Research Collaborative science conference Day 2 Part 3

2014

 * CFS/ME Research Collaborative Inaugural Conference Report 2014 64-page overview of all the presentations and workshops

Speakers

 * Prof Stephen Holgate - Welcome and Taking collaboration forward: next steps
 * Prof Robert Dantzer - Anne Faulkner Lecture: The neuroimmune basis of fatigue
 * Dr Neil Harrison - Interferon-alpha rapidly changes brain microstructure 
 * Alice Russell - Interferon-alpha induced persistent fatigue
 * Dr Lisa Blundell - Blood cytokine concentrations in CFS: a systematic review 
 * Kate Earl - Resveratrol treatment on TNF-α-induced cytokine release 
 * Dr Stuart Watson - Understanding the pathogenesis of autonomic dysfunction in CFS and its relationship with cognitive impairment
 * Prof Wan-Fai Ng - Biological fingerprints of fatigue
 * Prof Carmine Pariante - Inflammation and fatigue: is it different from depression?
 * Dr Sue Wilson - Sleep and CFS/ME
 * Prof Anne McArdle -  Mitochondrial function and cytokine production in skeletal muscle of patients with CFS/ME
 * Dr Esther Crawley - The epidemiology of CFS/ME in adolescence
 * Prof Peter White - PACE: A trial & tribulations
 * Prof Andrew Lloyd - Acute infection & post-infective fatigue as a model for CFS
 * Prof Ian Lipkin - Microbiology & immunology of CFS/ME and other challenging disorders
 * Prof Maria Fitzgerald - Understanding pain mechanism in children and adolescents
 * Prof Jon Tobias - The epidemiology of adolescent CFS and chronic widespread pain
 * Dr Roberto Nuevo - Recovery and persistence from CFS/ME in adolescents
 * Prof Hugh Perry - End of conference summary

Minutes

 * DRAFT Minutes of CMRC Minutes of CMRC Meeting Meeting Meeting 15 January 2016
 * DRAFT Minutes of CMRC Meeting 11 November 2015

Executive Board

 * Stephen Holgate (Chair)
 * Esther Crawley (Vice-Chair)
 * Sonya Chowdhury (Action for ME)
 * Charles Shepherd (ME Association)
 * Mary-Jane Willow, Association of Young People with M.E.
 * Paul Little (PL), Southampton University
 * Hugh Perry (HP), Southampton University
 * Jen McKendrick (JM), ME Research UK
 * Paul Moss (PM), Birmingham University
 * Joe McNamara (JM), Medical Research Council
 * Neeha Isaar-Brown (NIB), Medical Research Council
 * Clive Kerfoot (CK), CFS Research Foundation
 * Edward Sykes (Science Media Centre)
 * Peter Muir (PM), CFS Research Foundation
 * Neil Abbott (NA), ME Research UK
 * Julia Newton (JN), Newcastle University
 * Zoe Gotts (ZG), Northumbria University
 * Allison Wallace (Wellcome Trust observer)

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) (George Davey Smith)
 * 2016, CEO blog: Prof George Davey Smith on the Grand Challenge
 * 2013, UK Research Collaborative
 * 2013, CFS/ME Research Collaborative