CMRC update: new purpose, objectives and values
March 06, 2018
A new, ambitious, scientific strategy has been developed by the UK CFS/ME Research Collaborative (CMRC), of which Action for M.E. is an active Executive Board member.
The Executive Board of the CMRC has decided that, while there is a broader need for research across all disciplines, there has continued to be a distinct lack of biomedical CFS/ME research, so it will now adopt this as its core focus.
A number of people affected by M.E., originally members of the ME/CFS Epidemiology and Genomics Alliance, have agreed to form a CMRC Patient Reference Group, as full members of the CMRC Executive Board. With their support, the CMRC is seeking to:
- build on the momentum created by the Institute of Medicine in the US by securing a high-level report on the illness and research in the UK, and use this to seek greater investment from policy and decision-makers
- secure a James Lind Alliance Priority Setting Partnership to shape the research priorities for the field, which will have patients views at its heart
- establish a CFS/ME Platform, similar to that of the Dementias UK Platform, to expedite and consolidate biomedical CFS/ME research.
“We have laid some important foundations” says Prof Stephen Holgate, Chair. “But this is not enough. We need action from the highest level and the CMRC is committed to working with others to drive this. Most importantly, we need to see results now, not in another five years. I look forward to updating members at our 2018 conference in Bristol on Wednesday 19 and Thursday 20 September.”
The Executive Board have also looked at the CMRC’s Charter and terms of reference, with a focus on how the Board and CMRC members will work together and with others. You can read the CMRC’s new purpose, objectives and values, which replace its previous Charter, on our CMRC page.
After completing a five-year term of office as Deputy Chair, Prof Esther Crawley (Bristol University) will be standing down from this position and, due to a change in her role at the university, from the Board itself. Chair, Prof Stephen Holgate stated “We are immensely grateful to the hard work and commitment that Esther has provided to the CMRC and wish her the very best in her new role at Bristol University.”
Prof Chris Ponting (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh) has been elected by the Board to replace Prof Crawley. New members Joanna Elson (Newcastle University), Colin Smith (Brighton University), Neil Harrison (Sussex University) and Patrick Chinnery (Oxford University) have joined the Board.
Since its inception five years ago, the CMRC has successfully brought together significant numbers of researchers from across the UK and internationally with charities, mainstream funders and patients. With an aim to drive interest and funding in CFS/ME research, the CMRC has held four successful conferences, initiated and supported new collaborations, worked with mainstream funders and secured interest from pharma/industry, and brought researchers in from outside of the field as well as partners from charities covering overlapping illnesses.