ME/CFS is: is a long-term (chronic), fluctuating, neurological condition that causes symptoms affecting many body systems, more commonly the nervous and immune systems.  ME/CFS affects an estimated 250,000 people in the UK, and around 17 million people worldwide.  

At least one in four people with ME are so severely ill they are housebound, and often bedbound.

Led by people with ME/CFS, their carers, and clinicians, the ME/CFS Priority Setting Partnership aimed to identify the Top 10 research priorities to influence research funding in the future.

The Steering Group held its first meeting in October 2020.   Below are some videos that explain more about the work.


The photograph at the top of this page is reproduced with kind permission of the Dialogues for a neglected illness project

See news from this PSP: September 2023

The ME/CFS PSP Top 10 was published in May 2022.  

Once the PSP had announced its results, Ann West, a member of the Steering Group who represented the views of carers of people with ME, said to the JLA and everyone else on the Steering Group:

This has been one of the most positive experiences to date as a carer- thank you. Toto and her team have been wonderful throughout.

It was the most inclusive engagement process I have experienced, and truly supportive. Thanks to all for the huge amount of hard work which really has set the scene for positive change; in combination with the recent NICE guidelines we have the potential to see a huge difference, not only in research and medical fields but also culturally (which can be the hardest nut to crack)

It was great to be involved, and this has given real hope to pwME, particularly those who are severely affected and who have been afforded a rare opportunity to be heard.

A Researcher Tookit now shows the funding streams available for ME/CFS research, setting out:

  • UK government research funding opportunities
  • Support available to help researchers with their applications
  • Guides to embedding patient and public involvement
  • Resources to develop high quality proposals.

Alongside the Toolkit, you will also find:

  • Information on charity funding opportunities
  • Information on how to get involved with research if you are a person with lived experience of ME/CFS.

The Researcher Toolkit is an output of the UKCRC ME/CFS Research Working Group.

Key documents

ME/CFS PSP Protocol

ME/CFS PSP Terms of Reference

ME/CFS Question Verification Form