We are excited to announce our new research project, PRIME, ‘Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). PRIME aims to build research capacity for ME in the UK.
Started in October 2025, PRIME is funded by the Medical Research Council and is a 4 year project between Action for ME, the University of Edinburgh and the Genetics Centre of Excellence.
The aims of PRIME are:
1. Coordinate and engage researchers by creating at least 15 new research collaborations. We will bring together researchers from a range of backgrounds, along with private sector partners to investigate the genetics, biomarkers and disease mechanisms behind ME/CFS.
2. Strengthen International Research Networks by forming two global consortia, one with a focus on genetics and the other on molecular biomarkers. The aim of the consortias will be to share data, replicate research and create a shared research standard.
3. Build a Public and Patient Involvement (PPI) pool with at least 100 trained contributors (people with ME and their carers). This will be the world’s first large scale PPI pool available for ME researchers across the UK so that their research can be created and shaped by people with lived experience.
Our CEO, Sonya Chowdhury, says:
“The awarding of the PRIME grant is both a positive step forward and a stark reminder that people with ME/CFS have been poorly served for far too long. PRIME is only the beginning – it starts to address urgent gaps, but much more is needed.”
For too long ME research has been underfunded and fragmented. This research aims to tackle some of the underlying issues with ME research: a shortage of researchers, research not informed by ME patient’s lived experience and a lack of funding.
We urgently need sustained public investment to find the treatment that many are waiting for.
