An ME/CFS evidence review and associated interactive map has now been published through the National Institute for Health Research (NIHR) Journals Library: Recent research in myalgic encephalomyelitis/chronic fatigue syndrome: an evidence map | NIHR Journals Library.
This evidence map of national and international research in ME/CFS summarises what evidence is available, and takes account of the criteria that have been used to diagnose ME/CFS in the research studies. The map also shows the themes that the research has explored, and the types of research studies.
This work considers how current research maps against key themes covered by the James Lind Alliance Priority Setting Partnership research priorities.
This work was commissioned in collaboration with members of the DHSC Delivery Plan Research Working Group, including people with lived experience. Many thanks to those who took the time to work with the researchers on this project.
Summary
What is the question?
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a long-term condition with many different symptoms. People with ME/CFS have exhaustion, stopping them from doing activities and having a big impact on everyday life. They also have post-exertional malaise (PEM), meaning they become more unwell after using even small amounts of energy.
ME/CFS is not well understood. The symptoms needed for a professional to tell someone that they have ME/CFS have changed over time. Now, people have to experience post-exertional malaise to confirm ME/CFS, but this has not always been the case.
We wanted to bring together recent research on ME/CFS and explore the numbers of studies and the topics that were scrutinised.
What did we do?
We searched for all the studies on M/CFS that were published between January 2018 and May 2023. We brought together information about these studies. We grouped research studies based on the topics they investigated. We made an interactive map that shows all these ME/CFS studies. The map has filters to let people explore the studies that have only included the people with post-exertional malaise.
What did we find?
Our map contains 639 studies that have studied over 600,000 people with ME/CFS syndrome. The main topics we looked at were:
- ‘what is the cause?’ (53% of studies)
- ‘what is the problem?’ (38% of studies)
- ‘what can we do about it?’ (26% of studies)
- ‘diagnosis and assessment’ (15% of studies)
Some studies looked at more than one topic.
Studies do not always report things clearly. Some do not explain how it was decided if someone had ME/CFS; 11% of studies only included people with post-exertional malaise.
How can we help?
This map of ME/CFS studies can help plan future research. Knowing the numbers of studies looking at different topics can help plan what research to do next.
Dr Charles Shepherd,
Trustee and Hon. Medical Adviser to the ME Association,
Member of the DHSC Working Group on Research,
Member of the 2018-2021 NICE guideline on ME/CFS committee
Further Information
- ME/CFS Priority Setting Partnership
- The Department of Health and Social Care launch ‘Toolkit’ aimed at stimulating research into ME/CFS | May 2024
- The ME Association: The MEA writes to Ashley Dalton MP – the DHSC minister in charge of the DHSC Delivery Plan | March 2025
- The ME Association: Parliamentary Q&A on the ME/CFS delivery plan timescale and effectiveness | March 2025
- The ME Association: Parliamentary Update on DHSC Delivery Plan for ME/CFS | Jan 2025