PRIME – building infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis

PRIME is a new MRC-funded project aimed at bringing together patients/patient groups, academic & clinical researchers and industry to make progress in the understanding and treatment of Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Through the PRIME project, The University of Edinburgh, working with national charity Action for ME   and with leading ME/CFS researchers from across the UK, will build on the ground-breaking results from the recent DecodeME Genome-wide Association Study (GWAS). This was the analysis of >15,000 DNA samples that for the first time identified 8 genetic signals across the genome which reflect the genetic cause rather than the effects of ME/CFS. These include genetic links to immunological and neurological processes, as well as to chronic pain.

The DecodeME dataset is available to researchers worldwide.

The PRIME project seeks to catalyse new partnerships and consortia to further understand the genetics associated with ME/CFS and to identify molecular biomarkers that will enable accurate diagnosis and targeted treatment of this neglected and often misunderstood disease.

PRIME will support this endeavour through coordination and engagement with key stakeholders –including the formation of the world’s largest pool of Patient and Public Involvement (PPI) Representatives who will play a pivotal role in shaping new preclinical and clinical research studies. PRIME will also offer workshops, symposia and support for the ME/CFS research community and the general public to highlight research progress and new funding opportunities. In particular, opportunities will be given to Early Career Researchers (ECRs) to showcase their work and to participate in the collaborative and interdisciplinary approach to progressing ME/CFS research.

To deliver on these objectives, PRIME partners are keen to develop a diverse and extensive international network of stakeholders that will contribute to, and benefit from, focused interaction and knowledge exchange. It is hoped that out of this network will grow the partnerships and consortia inclusive of industry, clinicians and academic researchers with guidance from patients that will take further strides in identifying mechanisms, causes, diagnostics and treatments for ME/CFS.

PRIME does not wish to duplicate any activities of other established groups, networks or charities – but to work with these groups to ensure that knowledge sharing, collaboration and the prospect of new partnerships is maximised. A PRIME LinkedIn group will be created to help facilitate this ambition.

Any suggestions/nominations for PRIME network members are welcome and should be sent to the PRIME Project Manager.