Our research work

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UK ME Research Collaborative

Since its inception in 2013, the UK ME Research Collaborative (MERC), formerly known as the CFS/M.E. Research Collaborative or CMRC, has successfully brought together significant numbers of researchers from across the UK and internationally with charities, mainstream funders and patients.

Aiming to drive interest and funding in CFS/ME research - which, as highlighted by the MERC's 2016 M.E./CFS Research Funding report, represents just 0.02% of all active grants given by UK mainstream funding agencies - the MERC has held five 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.

The M.E./CFS Biomedical Partnership and DecodeME

The work of the CMRC has culminated into the creation of the M.E./CFS Biomedical Partnership which is made up of researchers, people with M.E./CFS, carers and the public. Early in 2020, the partnership made a successful grant application to the Medical Research Council and the National Institute for Health Research for DecodeME, the word's largest M.E. DNA study.

They aim to study the saliva of 20,000 people with M.E./CFS which will help us understand the disease and find treatments. Their DNA will then be compared with that of similar numbers of non M.E./CFS patients to pinpoint any genetic causes of the disease and possibly help guide drug development.

Purpose, objectives and values

Following a meeting of its Board in February 2018, the MERC agreed on a new purpose, objectives and values, which replace its previous Charter. You can read an interview with Prof Chris Ponting, who took up the post of MERC's Deputy Chair on 1 April 2018.

The CMRC's purpose is to promote the discovery of the biological mechanisms that underpin M.E., which, together with clinical observation, will drive the development of targeted new treatments for this highly underserved patient population.

Action for M.E. is a founding Board member of the MERC and, as part of our research strategy, plays an active part in supporting its work. If you have any questions about our work relating to the MERC, please get in touch.

2020 MERC science conference

The MERC sixth annual science conference will take place in Bristol, Tuesday 10 and Wednesday 11 March 2020, offering a fantastic opportunity to learn more about the latest published and unpublished research, meet potential collaborators and contribute to future developments.

International speakers include Prof Alain Moreau, Université de Montréal; Dr Sadie Whittaker, Solve ME; Prof Chris Ponting, University of Edinburgh/Biomedical Partnership and Dr Michael VanElzakker, Massachusetts General Hospital and Harvard Medical School.

You can:

Previous conferences

The MERC's fifth annual science conference took place in Bristol in September 2018, with scientists, people with M.E., clinicians and industry professionals coming together to discuss research ambitions and bringing more collaboration into the field. Our 2018 conference playlist of presentations is available now on the Action for M.E. YouTube channel (please note that, due to the presentation of unpublished data, some speakers declined to be filmed); a short written report of presentations was published on 5 December.

Patient Advisory Group

The Patient Advisory Group (PAG) to the MERC aims to support patient-centred biomedical research into M.E., using its the diverse voices of patients and carers patient to advise the CMRC and associated bodies and platforms (eg. the PAG is a registered stakeholder for the NICE guideline for M.E.). The PAG recruited a number of new members in December 2018, each with lived experience of M.E., including severe M.E. A member of the PAG attends each MERC Board meeting.

Join the MERC

Membership of the MERC is open to anyone with an interest in M.E. research, with Professional (£20 per annum), Student (£15 per annum) and Associate Membership (free) available. All members agree to work within the values of the MERC. You can apply to join by downloading and completing the CMRC application form as a PDF or as a Word document.

MERC Board meetings

The Board of the MERC meets four times a year to discuss the work of the MERC and report on actions taken. Click on the links below to read minutes from the following meetings (please note all are draft minutes, before being approved at the next meeting):

If you would like to see the minutes for previous MERC meetings before 2019, please contact us.