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 aims 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

Key documents

ME/CFS PSP Protocol

ME/CFS PSP Terms of Reference