The UK ME/CFS Research Collaborative (CMRC) hosted its very successful inaugural conference in Bristol in 2014. The aim of the CMRC – the first of its kind in the world – is to promote the highest quality of basic and applied evidenced-based and peer reviewed research into ME/CFS by bringing together national agencies, ME/CFS charities, and active researchers from across the UK who wish to work towards that common goal.
The conference took place in Wills Hall, part of the University of Bristol, and the organisers had invited a range of international speakers as well as researchers from the UK. These included Prof. Robert Dantzer of the University of Texas, Prof. Andrew Lloyd of the University of New South Wales, Prof. Ian Lipkin of Columbia University, New York, and MRC-funded research project leaders, each giving a brief presentation followed by a panel discussion and question and answer session.
Conference numbers were impressive, with more than 70 professional delegates registered for the research conference, and more than 60 Associate Member delegates (mainly patients and families) registered for the workshop, which also included 20 researchers. ME Research UK was represented by Vice-Chair, Sue Waddle, and Research & Operations Director, Dr Neil Abbot.
Opening the event, Prof. Stephen Holgate, Chair of the CMRC, welcomed delegates, and introduced Prof. Robert Dantzer who has a long-standing interest in the relationship between cancer-related fatigue and inflammation, and gave a fascinating overview of the journey towards understanding this relationship over the past 25 years.
As well as lectures, there were shorter presentations on an ‘inflammatory’ theme by researchers from Brighton & Sussex University, Kings College London, St Barts London, and the University of Liverpool.
The key event was the main afternoon workshop, which brought together patients and their families, and researchers to discuss issues of concern to ME/CFS patients, and ways of working together to facilitate research. The workshop was run by experienced facilitator Sally Crowe (pictured below with our Dr Neil Abbot), and frank dialogues on specific topics took place at individual tables throughout the afternoon.
When the conclusions were collated, the most pressing themes were found to be the exclusion of severely affected patients from research studies; the importance of ‘expert patients’; the importance of research on sleep and alternative & complementary medicine; the need for more stratified clinical groups in research (phenotyping) since the heterogeneity among patients is a clinical challenge; and the low profile of the illness and the need to assess and highlight its economic impact.
The workshop was followed by a robust and wide-ranging discussion between the expert panel (Profs Dantzer, Lloyd and Lipkin, and MRC-funded researchers) and the expert-patient audience. At the end, two key elements were agreed by all: the need to bring high-profile people into advocacy for the illness (well-known spokespeople), and the need to entice bright and thrusting young biomedical researchers into the field.
The members of the CMRC are grateful to the Medical Research Council for subsidising the conference, and particularly for its sponsorship of the patient–researcher session. As the MRC has said, “We have been keen to bring together charities and researchers in this area, which is why we supported the setting up of the CMRC. The MRC hopes that the patients’ session at this conference will be beneficial to those trying to take the field further – both patients and researchers.”