ME/CFS
About this PSP
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.
PSP website
Articles and publications
Key documents
Top 10 Priorities
1. What is the biological mechanism that causes post-exertional malaise (symptoms caused or made worse by physical, mental or emotional effort, which can be delayed) in people with ME/CFS? How is this best treated and managed?
2. Which existing drugs used to treat other conditions might be useful for treating ME/CFS, such as low dose naltrexone, or drugs used to treat Postural Orthostatic Tachycardia Syndrome (POTS)?
3. How can an accurate and reliable diagnostic test be developed for ME/CFS?
4. Is ME/CFS caused by a faulty immune system? Is ME/CFS an autoimmune condition?
5. Are there different types of ME/CFS linked to different causes and/or how severe it becomes? Do different types of ME/CFS need different treatments and/or have different chances of recovery?
6. Why do some people develop ME/CFS following an infection? Is there a link with long-COVID?
7. What causes the central and peripheral nervous systems (brain, spinal cord and nerves in the body) to malfunction in people with ME/CFS? Could this understanding lead to new treatments?
8. Is there a genetic link to ME/CFS? If yes, how does this affect the risk of ME/CFS in families? Could this lead to new treatments?
9. What causes ME/CFS to become severe?
10. How are mitochondria, responsible for the body's energy production, affected in ME/CFS? Could this understanding lead to new treatments?
10+. Does poor delivery or use of oxygen within the body cause ME/CFS symptoms? If so, how is this best treated?
The following questions were also discussed and put in order of priority at the workshop:
12. What causes brain fog in people with ME/CFS? How is this best treated and managed?
13. What causes ongoing fatigue (tiredness or exhaustion) in people with ME/CFS? How is this best treated and managed?
14. What causes people with ME/CFS to relapse and their symptoms to get worse? Are there ways to prevent or minimise relapses?
15. What causes pain in people with ME/CFS? How is this best treated and managed?
16. How do some people recover from ME/CFS? How might this understanding help others?
17. What causes sleep problems and sleep pattern changes in people with ME/CFS? How are these best managed and treated?
18. What would be the make-up of a high-quality specialist service for people with ME/CFS? Would this improve the treatment and care of people with ME/CFS?
Document downloads
For full details of all of the questions identified by this PSP, please see the document below.