PRIME

Action for ME, the University of Edinburgh and the ME Genetics Centre of Excellence have brought in over £800,000 from the Medical Research Council for a project to provide infrastructure in the UK and beyond, to accelerate progress in ME research and build the field.

The four-year project, called PRIME (‘Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome [ME/CFS])’ will start in October 2025.

PRIME will be led by Professor Chris Ponting, and co-produced with Action for ME, who will ensure that people with lived experience of ME are at the centre of the project. PRIME’s academic co-leaders are Professors David Price, Danny Altmann, Simon Carding, Douglas Kell and Karl Morten and Dr Caroline Dalton. They bring in extensive expertise in ME genetics, immunology, neuroscience, mitochondria (the ‘powerhouses’ of cells), gut health, infection, and systems biology.

PRIME has three main aims. The first is creating at least 15 new research collaborations to coordinate and engage researchers. PRIME will bring together researchers from a range of backgrounds, and private sector partners, to investigate the genetics, biomarkers and disease mechanisms of ME.

UK-based researchers will be able to request to use data from DecodeME and the UK Biobank, and request to approach DecodeME participants who gave their permission to be contacted about new research. PRIME will deliver regular online workshops and three national conferences. It will also arrange mentoring and career development for early-career researchers to help them enter and stay in ME research.

The second aim is to strengthen international research networks. To do this, PRIME will form two global groups of research organisations, one focusing on genetics and the other on molecular biomarkers. The groups will aim to share data, replicate research and create a shared research standard. All these activities will help embed ME research in the international science community, which is crucial for progress.

And thirdly, PRIME will build a trained Patient and Public Involvement (PPI) pool of at least 100 people who have lived experience of ME, either through having the illness, or as carers. This will be the world’s first large-scale ME PPI pool. It will be available for ME researchers across the UK and will mean that their research can be made and shaped by people who understand what it is to live with ME.

Action for ME will provide the PPI. They already have a strong record: DecodeME’s PPI has been held up by the UK’s Medical Research Council as a national example of best practice. Action for ME will give both researchers and PPI contributors tailored training and guidance on PPI, ensuring that researchers include lived experience of ME in an accessible, valued and impactful way.

People with ME and carers helped write the grant application for PRIME and are shaping it from start to finish.

National research programmes backed by tens of millions of pounds have transformed progress on other complex, underfunded conditions, with £59 million for dementia research and £22 million for mental health research over the years, for example. In comparison, PRIME’s £800,000 is drop in the ocean, despite being a welcome start.