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. Its launch in 2013 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, Action for ME and the Association of Young People with ME.

In May 2017, ME Research UK, who had previously been a member, announced, via Facebook, that they had withdrawn their membership.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

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 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."

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

4th Annual Conference - 2017
The 2017 conference was held at Future Inns Cabot Circus, Bond St South, Bristol, England on Wednesday 13 and Thursday 14 September 2017.

2017 Speakers - Day 1

 * Professor Stephen Holgate - Welcome
 * Dr Avindra Nath, National Institutes of Health, USA - Post-infectious CFS/ME study at National Institutes of Health
 * Dr Matt Wall, Imanova, London, UK - Imaging in research
 * Prof Alan Silman, Nuffield Department of Orthopaedics, Rheumatology and Musculoskeletal Science, University of Oxford, UK - Overview of fatigue in arthritis:insights for CFS/ME
 * Gina Wall, Royal Free Hospital Fatigue Service, London, UK - Examining Joint Hypermobility Syndrome in a London fatigue clinic
 * Dr Peter Rowe, John Hopkins Children’s Centre for CFS, Baltimore, USA - Orthostatic Intolerance and the lessons from the last two decades
 * Prof Dr Frans Visser, Cardiac Care Foundation, Hoofddorp, Netherlands- Orthostatic Intolerance
 * Dr Linda van Campen, Stichting Cardiozorg, Amsterdam, Netherlands - Cerebral blood flow decline: deconditioning or disease?''
 * James McCullagh, University of Oxford, UK - Investigating altered metabolism in ME/CFS
 * Prof John Gallacher, University of Oxford, UK - Brain health in an age of platform science

2017 Speakers - Day 2

 * Dr Julia Newton, University of Newcastle, UK - Collaboration
 * Dr Karl Morten, University of Oxford, UK - Investigating mitochondrial function in health and disease (Dr Morten's talk starts at 15:00 minute mark)
 * Dr Neil Harrison, Brighton and Sussex Medical School, UK - Using insights from psychoneuroimmunology to better understand ME/CFS Fatigue''
 * Prof Carmine Pariante, Kings College London, UK - Persistent Fatigue Induced by Interferon-alpha: A new Immunological Model for Chronic Fatigue Syndrome, part 1 part2
 * Phil Murray, Patient Advisory Group member - Patient Advisory Group: A valuable resource for ME research

3rd Annual Conference - 2016
The 2016 conference was held at the Novotel Hotel, Newcastle upon Tyne, England on Wednesday 28 and Thursday 29 September 2016.

2016 Speakers

 * Professor Stephen Holgate - Welcome and Closing
 * Professor David Ford, Swansea University - Database: routinely collected data for research''
 * Dr Zaher Nahle, Solve ME/CFS Initiative - All In at the Solve ME/CFS Initiative
 * Dr Nadia Howard-Tripp, NIHR Academic Clinical Fellow in Rheumatology, on behalf of Prof Fai Ng - Identifying the biological fingerprints of fatigue
 * Professor Julia Newton, Director of Newcastle Academic Health Partners and Clinical Professor of Ageing and Medicine, Newcastle University - 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
 * Alice Russell, King’s College London, on behalf of Prof Carmine Pariante - Persistent fatigue induced by Interferon-alpha: a new immunological model for CFS
 * Sonya Chowdhury, Chief Executive, Action for M.E. - Plenary session: Mapping global research funding over the last 10 years: a UK CFS/ME Research Collaborative-sponsored report
 * Dr Lindsay Keir, Senior Portfolio Developer, Wellcome - Enhancing research funding applications into CFS/ME
 * Dr Julius Bourke, Queen Mary’s University, London - The Brain in Pain studies: central sensitisation in CFS/ME and fibromyalgia
 * Andreas Finkelmeyer, University of Newcastle - Voxel-based morphometry shows reductions in brainstem white matter in CFS/ME
 * Dr Andrea Polli, University of Brussels - Immune-pain interaction following exercise in CFS/ME: associations between exercise-induced hyperalgesia, complement system and elastase activation
 * Victoria Strassheim, Newcastle University - Involving severe and very severely affected CFS/ME individuals in research: a clinician’s view point
 * Dr David Patrick, University of British Columbia - part one part two Researching a Syndrome: Findings from the UBC Complex Chronic Disease Study Group
 * Professor George Davey Smith, University of Bristol - States, traits and diagnosed conditions: implications for the design of population-based studies of human health and disease
 * Professor Caroline Relton, University of Bristol - Epigenetics - what is it and what can it do for ME/CFS?
 * Professor Paul Little, Professor Tom Walley and M.E. patient Opal Webster-Philip - Panel Discussion - Exploring the challenges of gaining ME/CFS funding for the range of science required
 * Dr Nadia Howard-Tripp, NIHR Academic Clinical Fellow in Rheumatology - Fatigue in Primary Sjögrens Syndrome is associated with lower levels of pro-inflammatory cytokines
 * Prof Anne McArdle, University of Liverpool - Metabolism of aberrant mitochrondrial factors and cytokine production in skeletal muscle of patients with CFS
 * Dr Sue Wilson, Imperial College London -Some preliminary results from the SAFFE study
 * Dr Neha Issar-Brown, Medical Research Council - Enhancing research funding applications into ME/CFS
 * Dr Esther Crawley, Bristol University - Investigating the treatment of Paediatric CFS/ME
 * Jessica Van Oosterwijck, University of Antwerp - The role of autonomic function in exercise-induced endogenous analgesia: a case-control study in ME/CFS and healthy people
 * Professor David Jones, Newcastle University - Anne Faulkner Memorial Lecture - Fatigue in PBC: Nearing Journeys End on a Long and Winding Road: Lessons for CFS/ME
 * Dr Sarah Knight, Murdoch Children’s Research Institute - "Improving quality of care in paediatric chronic fatigue syndrome"
 * Dr Juliet Chenery-Robson, University of Sunderland - The visualisation of CFS/ME’s invisibilities
 * Joanna Elson, Mitochondrial Research Group, Institute of Genetic Medicine, Newcastle University - Investigating the possibility of a role for mtDNA variation in CFE/ME

2016 Conference Reports & Video
The 2016 UK CFS/ME Research Collaborative was held 28-29 September 2016.
 * REPORT by: STEPHEN HOLGATE - 16 pages
 * ABBREVIATED CONFERENCE REPORT - 33 pages
 * FULL CONFERENCE REPORT - 92 pages


 * 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

2nd Annual Conference - 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

1st Annual Conference - 2014

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

2014 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 - 2017

 * Stephen Holgate (Chair)
 * Esther Crawley (Vice-Chair)
 * Sonya Chowdhury, CEO, Action for ME
 * James Brodie – GWPharma
 * Mike Dalrymple (MRCT)
 * Mark Edwards – EMIG
 * Mark Edwards
 * Zoe Gotts, Northumbria University
 * Neeha Isaar-Brown, Medical Research Council
 * Mark Jones - UCB
 * 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