PRIME is a four‑year programme funded by the Medical Research Council that started in October 2025. With over £800,000 secured by Action for ME, seven UK Universities, and the ME Genetics Centre of Excellence, PRIME is now creating the foundations needed to accelerate meaningful, high‑quality research into ME/CFS across the UK and globally.
Led by Professor Chris Ponting and co‑produced with Action for ME, PRIME places people with lived experience of ME at the heart of all its activities. Our academic leadership team includes world-class experts in genetics, immunology, neuroscience, mitochondrial biology, gut health, infection, and systems biology.
PRIME exists because progress in ME research has been held back for decades by fragmented efforts, limited funding opportunities, and a lack of coordinated infrastructure. This programme marks the next steps in a long‑overdue shift.
Researchers, clinicians, industry representatives, charities and people with lived experience came together at the inaugural PRIME International Symposium on 28 and 29...
We are pleased to announce that registrations for the 4th webinar in the PRIME project series are now open! The 4th webinar,...
Researchers, clinicians, industry representatives, charities and people with lived experience of ME/CFS will come together this September for the PRIME International Symposium,...
The first core aim of PRIME is to bring together researchers from a range of backgrounds, and private sector/industry partners to investigate the genetics, biomarkers and disease mechanisms of ME/CFS and to identify a pathway towards effective treatments. In order to catalyse these new collaborations, PRIME will develop a network to connect ME/CFS researchers, industry, charities and other interested parties (see Get Involved), and also deliver regular online workshops and three national symposia. It will also arrange mentoring and career development for early-career researchers to help them enter and stay in ME research.
The second core aim of PRIME is to strengthen the global scientific ecosystem around ME/CFS. PRIME will therefore launch two international research consortia: one focusing on genetics and the other on molecular biomarkers. The consortia will aim to share data, replicate research and create a shared research standard. This should advance robust, reproducible science, and accelerate our progress towards finding treatments for ME/CFS.
PRIME is now recruiting for people with lived experience of ME/CFS to join their ME/CFS Research Involvement Hub!
The ME/CFS Research Involvement Hub is the final, key aim of PRIME. It’s the creation of the world’s first network of at least 100 people with lived experience of ME/CFS, trained and supported as Patient and Public Involvement (PPI) contributors to work alongside researchers. Our goal is to make sure research is shaped by the voices of those it affects most.
We know that the best research happens when everyone involved shares ideas, listens to each other, and collaborates from the very beginning. That means people with ME/CFS are not just consulted—they are part of the team, helping to design, plan, and guide projects.
Through the Hub, PRIME will connect people with lived experience of ME/CFS to research projects that need their input.
This Hub will:
You can join the Hub if you are:
You must also:
Action for ME's Patient and Public Involvement Coordinator will manage the Hub, working alongside a team of contributors with lived experience of ME/CFS.
Recruitment to the Hub is now open! If you are interested in getting involved, you can download the Member Information Pack and sign up.
If you are looking to incorporate patient and public involvement in your work, then reach out to us on [email protected] and we’ll arrange a call.
Whatever stage your project is at, we can offer advice and discuss options for embedding PPI in the best ways.
"Unlike other serious health conditions, ME research has remained fragmented and under-resourced. PRIME begins to fill gaps that should never have existed."
University of Edinburgh
"The awarding of the PRIME grant is both a positive step forward and a stark reminder that people with ME have been poorly served for far too long. PRIME is only the beginning."
CEO, Action for ME
To enquire about joining the PRIME Network or collaborating on ME/CFS research, please contact us at [email protected]
We have set up a PRIME Network LinkedIn group to increase awareness and discussion of developments in ME/CFS research. Join our LinkedIn Group.
We will publish information on joining the ME/CFS Research Involvement Hub here as recruitment opens, and share it in Action for ME's newsletter! Sign up here if you haven't already.
