Launch of the PRIME ME/CFS Research Involvement Hub

We’re delighted to announce the launch of the PRIME ME/CFS Research Involvement Hub - a major new initiative placing people with lived experience of ME at the heart of research.

This exciting development marks a significant step forward in ensuring that ME research in the UK is shaped with, and by, the community it aims to serve.

Putting lived experience at the centre of research

You may hear the term Patient and Public Involvement (PPI). At its core, this simply means involving people with lived experience in shaping research - from identifying the most important questions, to designing studies, and sharing findings.

Across the world, funders increasingly recognise that research is stronger, more relevant, and more impactful when it is informed by the insights and experiences of patients and the public.

The PRIME ME/CFS Research Involvement Hub is built on this principle.

A first of its kind network

The Hub is the final key aim of the PRIME project and will create the world’s first network of at least 100 people with lived experience of ME, supported and trained as PPI contributors to work alongside researchers.

Through the Hub, people affected by ME will be connected directly with research projects that are seeking input. Contributors will be able to get involved in different ways, with some playing an active role as part of research teams, helping to shape, guide and improve research from the earliest stages.

The Hub will:

• Ensure ME research is shaped with and by people with lived experience
• Provide researchers across the UK with access to PPI contributors
• Offer tailored training and support for both contributors and researchers
• Build on Action for ME’s recognised excellence in involvement, including the UKRI-highlighted DecodeME model

Who can get involved?

You can sign-up if you are:

• A person with ME
• Someone who suspects they have ME but has not been able to access a formal diagnosis, including those with Long Covid whose symptoms resemble ME
• A carer of someone with ME
• A family member or friend providing regular, ongoing support

You must also:

• Live in the UK
• Be aged 16 or over
• Be able to understand and communicate in English (perfection not required)

PRIME is particularly keen to hear from people from minority or marginalised groups to ensure the Hub reflects the full diversity of the ME community.

Led by lived experience

The Hub will be managed by Action for ME’s Patient and Public Involvement team, working closely alongside contributors with lived experience.

This collaborative approach ensures that the Hub itself is shaped by the very people it exists to support, embedding meaningful involvement at every level.

Get involved

Recruitment to the Hub is now open.

Together, we can ensure the future of ME research is built with our community — not without it.

For researchers

If you are looking to incorporate patient and public involvement in your work, then reach out to us at prime@actionforme.org.uk 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.

Find out more about what the PRIME project is, and why it matters.