Join the PRIME ME/CFS Research Hub
The PRIME ME/CFS Research Involvement Hub is a group of people who are interested in helping to design and develop research in flexible ways. After joining the Hub, you may be invited to take part in activities such as responding to short questionnaires, joining online discussions, or working more closely with research teams to co‑produce research projects. You can choose how much, or how little, you’d like to be involved.
Who can join?
People with a personal connection to ME/CFS who are living in the UK, including:
- People with ME/CFS
- People with Long Covid who have ME/CFS‑like symptoms
- Carers, family members, and close supporters of someone with ME/CFS
You do not need any previous research experience to join — your perspective and experiences are what matter most.
How can I join?
Complete an application form that contains around 20 questions, most are tick box, and takes about 15-30 minutes complete.
Sign up and get more information here
Print a paper copy of this form here
Read the Information Pack
More about PRIME
PRIME’s full name is ‘Building Infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome‘.
It’s an initiative aimed at enhancing and accelerating research on ME/CFS. It:
- is funded by the UK Medical Research Council from 2025-2029
- aims to catalyse 15 new research collaborations
- and build 2 international research consortia
- and establish an ME/CFS Research Involvement Hub to deliver Patient and Public Involvement.
PRIME is a collaboration between the University of Edinburgh and Action for ME.
Read more on the Action for ME website
Watch the video of the April 2026 Workshop