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The UK CFS/ME Research Collaborative Conference

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Editor’s note: You can read the full 64- page report of the UK CFS/ME Research Collaborative (CMRC) conference HERE.

By Action for ME

The inaugural conference of the UK CFS/ME Research Collaborative (CMRC) brought together more than 70 researchers and clinicians with an interest in CFS/ME.

Some have worked in this area for many years, while others are entirely new to the field. This is hugely encouraging, as one of the key aims of the CMRC is supporting professionals not currently involved in CFS/ME research to help them develop those skills, connections and collaborations.

In addition, 56 patients, carers and ME advocates took part in a workshop focused on moving research forward. They were joined by 22 conference delegates from a wide range of disciplines for a very productive debate, feedback from which has been sent to the CMRC Executive Board for discussion and, crucially, action.
This report contains an overview of all the presentations and workshops on the programme. What is harder to capture, however, is the infectious atmosphere at the event, and the enthusiasm and collaborative spirit of everyone who attended.

There was a genuine buzz in the air, not just during the question and answer sessions and workshops, but also in the break times, over dinner and at the patient/researcher session: everywhere I heard people discussing how we can work together to move things forward.

On behalf of the CMRC, I would like to thank Clare Ogden, Head of Communications and Policy, Action for M.E. (clare@actionforme.org.uk) for contributing to, and coordinating, the production of this report. I would also like to thank the following people for their contributions to this report:

  • Prof Jonathan Edwards, Emeritus Prof of Connective Tissue Medicine, University College London

  • Simon McGrath (@smjnotes on Twitter)

  • Karen Hainsworth

  • Russell Fleming

  • Dr Charles Shepherd, Honorary Medical Adviser, ME Association

  • Sally Crowe, Crowe Associates

  • Sonya Chowdhury, CEO, Action for M.E.

And finally, I want to extend a huge thank you not only to everyone who attended the conference, but to all the patients, carers and professionals who support the work of the CMRC. Thank you for demonstrating that by coming together we can turn the CFS/ME field around for patient benefit.

Stephen Holgate

CMRC Chair

CONTENTS OF THE REPORT

Plenary session one: inflammation

Welcome: Prof Stephen Holgate, UK CFS/ME Research Collaborative (CMRC) Chair

Anne Faulkner Lecture: The neuroimmune basis of fatigue: Prof Robert Dantzer, University of Texas Anderson Cancer Centre

Interferon-alpha rapidly changes brain microstructure: Dr. Neil Harrison, University of Sussex

Interferon-alpha induced persistent fatigue: Alice Russell, Kings College London

Blood cytokine concentrations in CFS: a systematic review: Dr Lisa Blundell, Barts and The London School of Medicine and Dentistry

Resveratrol treatment on TNF-?-induced cytokine release: Kate Earl, University of Liverpool

Associate Member/patient and researcher session (also see Appendices)

Working together for more and better research that benefits people with CFS/ME: Workshop facilitated by Sally Crowe

Panel discussion for researchers and Associate Members: Chaired by Prof Stephen Holgate, CMRC Chair

Plenary session two: MRC-funded CFS/ME research

Understanding the pathogenesis of autonomic dysfunction in CFS and its relationship with cognitive impairment: Dr Stuart Watson (for Prof Julia Newton), Newcastle University

Biological fingerprints of fatigue: Prof Wan-Fai Ng, Newcastle University

Inflammation and fatigue: is it different from depression?: Prof Carmine Pariante, King’s College London

Sleep and CFS/ME: Dr Sue Wilson (for Prof David Nutt), Imperial College London

Mitochondrial function and cytokine production in skeletal muscle of patients with CFS/ME: Prof Anne McArdle, University of Liverpool

The epidemiology of CFS/ME in adolescence: Dr Esther Crawley, University of Bristol

PACE: A trial & tribulations: Prof Peter White, Barts and the London School of Medicine and Dentistry

Plenary session three: infection

Acute infection & post-infective fatigue as a model for CFS: Prof Andrew Lloyd, University of New South Wales
Microbiology & immunology of CFS/ME and other challenging disorders: Prof Ian Lipkin, Columbia University

Plenary session four: Pain, paediatric CFS and epidemiology

Understanding pain mechanism in children and adolescents: Prof Maria Fitzgerald, University College London

The epidemiology of adolescent CFS and chronic widespread pain: Prof Jon Tobias, University of Bristol

Recovery and persistence from CFS/ME in adolescents: Dr Roberto Nuevo, University of Bristol

Closing presentations

Workshop feedback: Prof Stephen Holgate, CMRC Chair

Taking collaboration forward: next steps: Prof Stephen Holgate, CMRC Chair

End of conference summary: Prof Hugh Perry, University of Southampton

Appendices relating to the Associate Member/patient and researcher session

Appendix 1

Appendix 2

Appendix 3

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