by Simon McGrath
The new UK CFS/ME Research Collaborative has had its first meeting and it very much looks like it means business. They have plans to rev up the research agenda and raise funds – and they have key players on board too.
The CMRC is chaired by Stephen Holgate, MRC professor of Immunopharmacology at Southampton, with Dr Esther Crawley as vice chair. There are then five charities and five further researchers to complete the Executive Board.
So far Professors Julia Newton (Autonomic system & fatigue), Hugh Perry (Neuropathology), Paul Little (Primary Care Research), and Peter White (Psychiatry) have been appointed, with one more to follow. I don’t know the views of all the researchers, but that looks to me like a greater emphasis on the biomedical than the biopsychosocial.
Hugh Perry is a particularly interesting member as his research is on links between inflammation, the brain and disease. He was on the former MRC ME/CFS Expert group and is Chair of the MRC’s Neuroscience and Mental Health (funding) Board. That’s a very useful person to have onside.
The five charities are the ME Association (Dr Charles Shepherd), Action for ME (Sonya Chowdhury, chief executive), the CFS Research Foundation (Clive Kerfoot), Association for Young People with ME (Mary-Jane Willows) and ME Research UK (Dr Neil Abbott/Sue Waddle).
There are several official Observers too, which helpfully includes the three main funders of research in the UK: The Medical Research Council (MRC), the National Institute of Health Research and The Wellcome Trust. The MRC were represented by Joe McNamara, Programme Manager for the Population Science and Public Health Board, who went out of his way to offer support to the group, including resources for a planned AGM. The other funding Observers, along with the researcher Executive members, sent apologies, but are expecting to be present at future meetings.
Also as Observers are BACME, representing clinicians, and Ed Sykes for the Science Media Centre (SMC). The presence of the SMC is very much part of the broad church approach, as they have promoted a biopsychosocial view of ME/CFS up till now. However, Charles Shepherd did raise concerns with Ed Sykes about the way the SMC has presented ME/CFS research, so it does represent an opportunity for a dialogue.
The Collaborative would also like to have parliamentary input and this will be discussed with the All Party Parliamentary Group.
Action for ME are providing the secretariat for the CMRC, which has been funded by one of their donors who has been very impressed by the work of the CMRC. Administrative support is not usually seen as an exciting thing to fund, but I think that’s a smart move by the donor.
Getting down to work: Funding and more
The Collaborative is setting up four ‘Workstreams’ to get things done. Little was said about three of them – Publicity & Awareness, Increasing Capacity, and Organisation (presumably more will emerge on this in future) but there were some significant developments regarding funding priorities.
Funding priorities: severely-affected and sub-grouping
The Collaborative wants to stimulate more funding for research and support a strategic approach for future funding. Stephen Holgate has said that fundraising will be a priority. It’s quite possible that the UK Research Collaborative – backed by almost all the ME charities and all the main researchers – could pull in new and wealthy donors. Parkinson’s research was revolutionised by a donation of £5 million – wouldn’t it be nice if something like that came out of this initiative? (I do like to dream).
The MRC has already identified four priority areas including immune dysfunction and neuropathology, but the Collaborative has now also prioritised severely-affected patients and epidemiology (including sub grouping/phenotyping). Great to see the severely-affected (and severely-neglected) getting attention in research. The Board even discussed having ‘severely affected’ as a separate workstream, but it was better as a research priority to ensure that activity was cross-cutting and that the focus is on increasing funding to enable more research into this area.
Obviously this new approach brings the risk of the CMRC competing with individiual charities for funds so those involved are approaching this with some caution. Signing up to the research priorities “would in no way undermine the charities’ independence with regard to their own research activities”. And it was agreed that all charities would provide a summary of their research priorities by the end of June to identify where the differences and alignments exist. Action for M.E. are asking for views to inform their research strategy as well as the priorities they will put forward to the Collaborative – you can take the AfME survey here.
As well as specific areas for research, the Collaborative might look at studentships, joint fellowships and bursaries to increase access to research in the field for early career researchers.
On the subject of research funding, both the ME Association and ME Research UK are both hoping to win for up to £2,000 in ‘The Big Break’.
Dealing with the first spat
Given its ‘Big Tent’ make up, there are bound to be disagreements in the CMRC – and it looks like the first one has already taken place over the launch press release:
Some of the charities received negative feedback regarding some aspects of the press release and the notes to editors prepared by Bristol University. It was acknowledged that there are differences in some areas such as prevalence rates and that we need to produce information that best reflects the range of positions for future use [my note: this probably also refers to background notes included with the press release emphasing the role of psychological factors]. Sonya Chowdhury has coordinated a teleconference for the charities to discuss this and to prepare a draft for approval by the Board. It was reiterated that there was not an expectation that independent positions should be compromised.
I think the significance of this is not in the specifics of the press release, but in the fact that the problem was recognised – rather than swept under the carpet – and is apparently being dealt with constructively. If the CMRC is to succeed, I suspect there will need to be a lot more of this constructive work in future.
Big Pharma takes an interest
An unnamed pharmaceutical company has expressed an interest in working with the Collaborative and will be asked to show “what value they would create and what they could contribute to support the workstreams, especially with a focus on funding” ( , my italics).
There will be an annual event for researchers which could provide a combination of learning and development through showcasing research projects, as well as time to develop collaborations on new projects.
So: the Research Collaborative looks like it’s going to make an impact. Charles Shepherd described it as “a very big and potentially extremely powerful tent”. Sonya Chowhury is positive too: “As a group, we are committed to action; to making a real difference and enhancing work in the research field … It’s such an exciting time at the moment and it’s essential that we work collaboratively to leverage the potential and create even more capacity than we would by working on our own”.
Phoenix Rising is a registered 501 c.(3) non profit. We support ME/CFS and NEID patients through rigorous reporting, reliable information, effective advocacy and the provision of online services which empower patients and help them to cope with their isolation.
There are many ways you can help Phoenix Rising to continue its work. If you’re able to offer your time, we could really use some more writers, proof-readers, fundraisers, technicians…and we’d love to expand the board of directors. You can even donate significant sums, at no cost to yourself, as you shop online! To find out more, visit Phoenix Rising’s Donate page by clicking the button below.