Republished from my Facebook page.

In a dramatic move on March 6, the UK CFS/ME Research Collaborative (CMRC) committed itself to a new, biomedical direction. It has started taking concrete action to engage with patients and also announced ambitious plans to enable much more biomedical research in the UK. These changes are enshrined in a statement of purpose, objectives and values (PDF) that replaces the Collaborative’s former charter.

Esther Crawley, the CMRC’s controversial deputy chair, is stepping down from that role and from the board, due to a change in her role at her university. From this April, she will be replaced by Chris Ponting, Professor of Medical Bioinformatics at the University of Edinburgh. He heads the multi-million-pound Biomedical Genomics research programme at the Medical Research Council (MRC) Institute of Genetics and Molecular Medicine.

The CMRC has set out its new purpose as promoting the discovery of the biological mechanisms and causal pathways that underpin ME/CFS, in order to develop targeted new treatments. While the organisation does continue to adopt the “big tent” approach favoured by its chair, Stephen Holgate, and supports research from all research areas, the important difference is that the biomedical part of the tent is now explicitly the priority.

After years of reluctance to engage with patients and their criticisms of psychosocial research, the CMRC will now have at least one patient on the board and wants its Patient Reference Group (PRG) to lead the process of setting its future priorities. The CMRC’s purpose statement invites all stakeholders to help shape its activity and the Collaborative is also looking at how it can consult with patients more widely, beyond its PRG.

• A data-sharing “portal” bringing together data from many different studies with a total of over two million patients.
• Networks linking sites across the UK, providing 30 new, state-of-the-art brain scanners, supporting stem cell research and using informatics to co-ordinate the best science possible.
• A programme of experimental medicine to find out what works, and why – focusing on the most promising biomedical areas.

What’s a research platform and what would one mean for ME/CFS?

The MRC set up the Dementias Platform to scale up UK research efforts on dementia by “bringing together researchers from universities and industry in the fight to develop effective treatments for dementia fast”. The platform has three strands:

• A data-sharing “portal” bringing together data from many different studies with a total of over two million patients.
• Networks linking sites across the UK, providing 30 new, state-of-the-art brain scanners, supporting stem cell research and using informatics to co-ordinate the best science possible.
• A programme of experimental medicine to find out what works, and why – focusing on the most promising biomedical areas.

The CMRC has yet to explain how such a platform would work for ME/CFS and patients will want to hear how this will directly lead to new studies that will uncover biological causal pathways. But if the ME/CFS platform mirrors the Dementias one in attracting large amounts of funding and making an impact, that’s got to be good news.

Will the CMRC’s plans succeed?

Making this happen won’t be easy. However, it appears that the CMRC has already made a promising start. It presented its ideas to the MRC last week and received a “positive” response. And perhaps the most interesting developments of all are hinted at in the minutes of the latest board meeting (PDF):

The CMRC praised the US National Institutes of Health’s (NIH’s) funding of the new centre of excellence collaborations in the USA and suggested the possibility of a partnership with the NIH. It’s not clear if this would mean the NIH funding some kind of collaboration in the UK.

Professor Chris Ponting – a key figure on the CMRC?

He and others have had contact with an individual who is meeting with “a high-level research funder decision-maker” and it appears that this individual has a similar vision to the CMRC.

I’ve never previously heard of such opportunities to directly influence high-level funders or senior politicians. Suddenly, things appear to be opening up, but the minutes give no more information about these opportunities: perhaps it’s too early to divulge details publicly. But these developments may explain the CMRC’s apparent confidence that it can turn its bold plans into reality.

Professor Chris Ponting – a key figure on the CMRC?

What makes the CMRC’s new moves towards a strong biomedical focus so surprising is that previously, patients have felt that the Collaborative has been too enthusiastic about psychosocial research, and very unwilling to engage with patients’ criticisms and concerns on that topic. As a result, there has been a long history of conflict between the two parties. On the Science for ME forum – a good litmus test, since the forum consists of hundreds of patients with a strong interest in good science – there has been a guarded welcome to the new changes from many, usually expressed alongside some scepticism. A minority of patients expressed scepticism only.

However, what has been notable is the support among patients for Chris Ponting as the new deputy chair, and this is particularly pleasing to me because he is my friend: we have known each other for many years and it is fair to say that I am the reason he first took an interest in ME/CFS. As a successful scientist running a large research programme, he certainly didn’t need to become involved in ME/CFS research in order to enhance his career, and I’m very grateful that he was willing to take on the extra work.

He recently helped to present the screening of Unrest at the Scottish Parliament and tweeted his own response to the film, to the approval of many patients:

Beautifully wrought film (@unrestfilm) by @jenbrea awash with loss due to ME/CFS.
Note to scientist self: when ignorant, admit this.
Note to science funders: when ignorant of cause, pump-prime to generate testable hypotheses.@wellcome @JeremyFarrar @The_MRC #timeforunrest

— Chris Ponting 💙 (@CGATist) January 11, 2018

I asked Chris to comment on the new developments, especially in response to patients’ concerns that the board might just be playing lip-service to a “biological” focus. I also mentioned patients’ worries that the CMRC would press ahead without engaging with patients and the wider community of researchers outside the Collaborative. Chris was travelling but produced this statement on the fly:

“I am very happy to listen to patients’ and carers’ concerns and see whether I can address them. But I only come into my CMRC Deputy Chair role from next month so my views are my own only.

“Having seen first-hand over 20 years how devastating ME can be, it is genuinely exciting to help craft a forward looking research strategy. I expect the CMRC to gather all – often differing – views from researchers and [people with ME] on this research strategy but its focus, as announced, will be biomedical. This is where, I think, I can help having grown into biomedical research from a background that has taken in everything from particle physics to human genetics.

“Once after full consultation we have our science strategy in place I expect us to design a research platform akin to the one for Dementias UK complete with independent oversight and patient advisory groups.

“Genetics, in particular, has revolutionised our understanding of many diseases that have an inherited component. Before we knew the results of Alzheimer’s disease genetics studies, for example, we did not understand that this appears to be a disease of brain immune cells (microglia) and not neurons. Using the same approach, we could find out in what cells ME originates. It would be a major step forward to locate the origins of this devastating disease in human physiology.

“So my own view is that a genetics study would lay down a foundation stone on which other biomedical findings could then be built. There are many and established ways of setting up such a study and we will need to work together as researchers and patients to make this a success.

“This will be only a first step along what could be a long path. Yet this is a journey that I am committed to taking together as quickly as we can.”

Coming from someone who will represent the CMRC, this willingness to engage and to listen, both to patients and other researchers, is a refreshing change. I can also say that this is very typical of him. And on the science side, I thought his comments about the potential of genetics to deliver insights into ME/CFS were particularly interesting.

What does this mean for the future?

Chris’s appointment appears to be just one of many signs of a big, positive change at the CMRC. But patients need the Collaborative to share more information about its plans, to be as open to engagement as it says it will, and above all, to deliver a major boost to biomedical research activity in the UK. Nonetheless, the new situation represents a radical break with the past and looks very promising to me.

For now, we can only watch and wait. But perhaps the UK will finally join the US and other countries in focusing on biomedical research as the way to crack ME/CFS.

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