Recent research in myalgic encephalomyelitis/chronic fatigue syndrome: an evidence map
Todhunter-Brown A, Campbell P, Broderick C, Cowie J, Davis B, Fenton C, Markham S, Sellers C, Thomson K
Record ID 32018013951
English
Authors' objectives:
Myalgic encephalomyelitis/chronic fatigue syndrome is a chronic condition, classified by the World Health Organization as a nervous system disease, impacting around 17 million people worldwide. Presentation involves persistent fatigue and postexertional malaise (a worsening of symptoms after minimal exertion) and a wide range of other symptoms. Case definitions have historically varied; postexertional malaise is a core diagnostic criterion in current definitions. In 2022, a James Lind Alliance Priority Setting Partnership established research priorities relating to myalgic encephalomyelitis/chronic fatigue syndrome. We created a map of myalgic encephalomyelitis/chronic fatigue syndrome evidence (2018–23), showing the volume and key characteristics of recent research in this field. We considered diagnostic criteria and how current research maps against the James Lind Alliance Priority Setting Partnership research priorities.
Authors' results and conclusions:
Of the 11,278 identified studies, 742 met the selection criteria, but only 639 provided sufficient data for inclusion in the evidence map. These reported data from approximately 610,000 people with myalgic encephalomyelitis/chronic fatigue syndrome. There were 81 systematic reviews, 72 experimental studies, 423 observational studies and 63 studies with other designs. Most studies (94%) were from high-income countries. Reporting of participant details was poor; 16% did not report gender, 74% did not report ethnicity and 81% did not report the severity of myalgic encephalomyelitis/chronic fatigue syndrome. Forty-four per cent of studies used multiple diagnostic criteria, 16% did not specify criteria, 24% used a single criterion not requiring postexertional malaise and 10% used a single criterion requiring postexertional malaise. Most (89%) systematic reviews had a low methodological quality. Five main topics (37 subtopics) were included in the evidence map. Of the 639 studies; 53% addressed the topic ‘what is the cause?’; 38% ‘what is the problem?’; 26% ‘what can we do about it?’; 15% ‘diagnosis and assessment’; and 13% other topics, including ‘living with myalgic encephalomyelitis/chronic fatigue syndrome’. We have produced an interactive evidence map, summarising myalgic encephalomyelitis/chronic fatigue syndrome research from 2018 to 2023. This evidence map can inform strategic plans for future research. We found some, often limited, evidence addressing every James Lind Alliance Priority Setting Partnership priority; high-quality systematic reviews should inform future studies.
Authors' methods:
Using a predefined protocol, we conducted a comprehensive search of Cochrane, MEDLINE, EMBASE and Cumulative Index to Nursing and Allied Health Literature. We included all English-language research studies published between January 2018 and May 2023. Two reviewers independently applied inclusion criteria with consensus involving additional reviewers. Studies including people diagnosed with myalgic encephalomyelitis/chronic fatigue syndrome using any criteria (including self-report), of any age and in any setting were eligible. Studies with
Details
Project Status:
Completed
URL for project:
https://www.journalslibrary.nihr.ac.uk/programmes/hta/NIHR136262
Year Published:
2025
URL for published report:
https://www.journalslibrary.nihr.ac.uk/hta/published-articles/BTBD8846
URL for additional information:
English
English language abstract:
An English language summary is available
Publication Type:
Full HTA
Country:
England, United Kingdom
DOI:
10.3310/BTBD8846
MeSH Terms
- Fatigue Syndrome, Chronic
- Disease Management
- Evidence Gaps
Contact
Organisation Name:
NIHR Health Technology Assessment programme
Contact Address:
NIHR Journals Library, National Institute for Health and Care Research, Evaluation, Trials and Studies Coordinating Centre, Alpha House, University of Southampton Science Park, Southampton SO16 7NS, UK
Contact Name:
journals.library@nihr.ac.uk
Contact Email:
journals.library@nihr.ac.uk
This is a bibliographic record of a published health technology assessment from a member of INAHTA or other HTA producer. No evaluation of the quality of this assessment has been made for the HTA database.