The CMRC refocuses its research strategy, welcomes individuals with M.E. onto its executive, and Professor Chris Ponting replaces Professor Esther Crawley as Deputy Chair.
A new, ambitious, scientific strategy has been developed by the UK CFS/ME Research Collaborative (CMRC), of which Action for M.E. and the ME Association are Executive Board members.
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.
Several individuals affected by M.E., originally members of the Patient Advisory Group for the MEGA[1] research project, 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, like that of the Dementias UK Platform, to expedite and consolidate biomedical CFS/ME research.
Short video explaining Dementias UK Platform
“We have laid some important foundations” says Prof Stephen Holgate, CMRC 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.”
Professor Chris Ponting appointed
After completing a five-year term of office as Deputy Chair, Professor 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.
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.”
Professor Chris Ponting (Section Head, Biomedical Genomics, Chair of Medical Bioinformatics MRC/University of Edinburgh) has been elected by the Board to replace Professor Crawley.
New members Dr Joanna Elson (Newcastle University), Professor Colin Smith (Brighton University), Dr Neil Harrison (Sussex University) and Professor Patrick Chinnery (Cambridge University) have joined the Executive Board.
You can see the full executive board membership listed in the CMRC section of our website.
New mission
The Executive Board also took a fresh look at CMRC’s Charter and terms of reference, with a focus on how the Board and CMRC members will work together and with others. The new mission statement is reproduced below:
CMRC Purpose
To promote the discovery of the biological mechanisms that underpin CFS/ME, which, together with clinical observation, will drive the development of targeted new treatments for this highly underserved patient population.
CMRC Objectives
- To design, implement and analyse the outcome of a cross-stakeholder, comprehensive, national research strategy for CFS/ME and experimental medicine.
- To create an open cross-sector platform for effective knowledge-exchange and data sharing both nationally and internationally, to optimise research, raise awareness of the disease, and influence policymakers and investors.
CMRC Values
- We are an intellectually generous community sharing data, best practice and technologies.
- We are a creative community harnessing new ideas, new technologies and new ways of working.
- We are a collaborative community inviting all stakeholders to join our programmes and shape our activity.
- We are an enabling community, facilitating the leverage of further resources for CFS/ME research.
You can also read the CMRC’s new purpose, objectives and values, which replace its previous Charter, here.
Achievements
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.
More information:
- The above changes are reflected in the CMRC executive meeting minutes from February.
- All the latest information is now reflected in the CMRC section of our website.
- Details about the Autumn CMRC Research Conference in Bristol will be available soon.
There is considerable criticism from long term advocates about the NIH’s latest moves. I hope this will be taken into consideration.
“The Executive Board of the CMRC has decided that, while there is a broader need for research across all disciplines …”
Who on earth is behind this statement? Someone who thinks we need more psychotherapy, CBT, GET research??
“Wessely 2001 JAMA admits CBT-GET not ‘remotely curative’ in CFS, are ‘not the answer to CFS’ but are just the best of whats available. His words – the no.1 promoter of CBT-GET model of CFS/ME.”
https://twitter.com/keithgeraghty/status/940642865675493378
Its very good news that the CMRC is refocusing In a good way. But it will take some effort to rebuild trust in the patient community. Putting the title back to ME/CFS rather than CFS/ME would be helpful towards that.
The ME title (Myalgic Encephalomyelitis) not Encephalopathy is taking off hugely in America and is highly regarded by patients and it’s also essential to remain aligned with the WHO definition of Encephalomyelitis. Please safeguard and use that preferred title.
I Agree with mayfly about the correct definition being used i.e. ME. The WHO definition of Encephalomyelitis which, I sincerely hope does not change with any new guidelines from WHO and NICE accept it as the serious Disease that, is neither psychological or anything to do with past misrepresentations of behavioural, hysterical, functional, to name a few.
The patient community see through wordplay.
Any alignment with BACME is both unnecessary, as it is a physical disease and nothing whatsoever to do with their false assumptions, which have caused serious harm.
What is staggering is that Simon Wessely conceded in 2001 that CBT-GET is not remotely curative and not the answer to M.E., yet he then proceeds to help bring to pass the PACE ‘trial’ ! – a piece of pseudoscientific nonsense that cost UK taxpayers £5 million. How utterly absurd.
The CMRC needs to absolutely distance itself from all the damage that Wessely and his colleagues have done if it wants to win the trust of patients with M.E..