Established in 2013, the UK ME Research Collaborative (MERC), formerly known as the CFS/ME Research Collaborative or CMRC, 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 ME research - which, as highlighted by the MERC's 2016 ME/CFS Research Funding report, represents just 0.02% of all active grants given by UK mainstream funding agencies - the MERC 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 work of the CMRC has culminated in the creation of the ME/CFS Biomedical Partnership which is made up of researchers, people with ME/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 ME DNA study.
DecodeME aims to study the saliva of 20,000 people with ME/CFS which will help us understand the disease and find treatments. Their DNA will then be compared with that of similar numbers of non ME/CFS patients to pinpoint any genetic causes of the disease and possibly help guide drug development.
Recruitment for participants in this ground-breaking study launched in September 2022, and everyone with ME is invited to take part.
The MERC Patient Advisory Group (PAG) continues to support patient-centred biomedical research into ME, using its diverse voices of patients and carers to advise associated bodies and platforms. Currently, PAG are Co-Chairs of the Research Working Group for the Department of Health and Social Care’s ME/CFS Delivery Plan. Previous work has included being registered as a stakeholder for the NICE guideline for ME/CFS, and a former Convenor of the PAG is part of DecodeME's Patient and Public Involvement Steering Group. PAG also held a place on the Steering Group of the James Lind Alliance Priority Setting Partnership, Prioritise ME, identifying the top 10+ ME research priorities.
The PAG are currently recruiting (Winter 2022) a number of new members, each with lived experience of ME, including severe ME.
Read the PAG's statement about the updated 2021 NICE guideline.
The MERC held six annual science conferences, the final one taking place in March 2020, offering a fantastic opportunity to learn more about the latest published and unpublished research, meet potential collaborators and contribute to future developments.
The Board of the MERC previously met four times a year to discuss the work of the MERC and report on actions taken. Click on the links to read minutes from meetings in October, June, April and January 2019. If you would like to see the minutes for MERC meetings before 2019, please contact us.
