A Scoping Review of ‘Pacing’ for Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Lessons Learned for the Long COVID Pandemic

Sanal-Hayes, Nilihan E.M.; Mclaughlin, Marie; Hayes, Lawrence D.; Mair, Jacqueline L.; Ormerod, Jane; Carless, David; Hilliard, Natalie; Meach, Rachel; Ingram, Joanne; Sculthorpe, Nicholas F.

Abstract

Background
Controversy over treatment for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a barrier to appropriate treatment. Energy management or pacing is a prominent coping strategy for people with ME/CFS that involves regulating activity to avoid post exertional malaise (PEM), the worsening of symptoms after an activity. Until now, characteristics of pacing, and the effects on patients’ symptoms had not been systematically reviewed. This is problematic as the most common approach to pacing, pacing prescription, and the pooled efficacy of pacing was unknown. Collating evidence may help advise those suffering with similar symptoms, including long COVID, as practitioners would be better informed on methodological approaches to adopt, pacing implementation, and expected outcomes.
Objectives
In this scoping review of the literature, we aggregated type of, and outcomes of, pacing in people with ME/CFS.
Eligibility criteria
Original investigations concerning pacing were considered in participants with ME/CFS.
Sources of evidence
Six electronic databases (PubMed, Scholar, ScienceDirect, Scopus, Web of Science and the Cochrane Central Register of Controlled Trials [CENTRAL]) were searched; and websites MEPedia, Action for ME, and ME Action were also searched for grey literature, to fully capture patient surveys not published in academic journals.
Methods
A scoping review was conducted. Review selection and characterisation was performed by two independent reviewers using pretested forms.
Results
Authors reviewed 177 titles and abstracts, resulting in included 17 studies: three randomised control trials (RCTs); one uncontrolled trial; one interventional case series; one retrospective observational study; two prospective observational studies; four cross-sectional observational studies; and five cross-sectional analytical studies. Studies included variable designs, durations, and outcome measures. In terms of pacing administration, studies used educational sessions and diaries for activity monitoring. Eleven studies reported benefits of pacing, four studies reported no effect, and two studies reported a detrimental effect in comparison to the control group.
Conclusions
Highly variable study designs and outcome measures, allied to poor to fair methodological quality resulted in heterogenous findings and highlights the requirement for more research examining pacing. Looking to the long COVID pandemic, future studies should be RCTs utilising objectively quantified digitised pacing, over a longer duration of examination, using the core outcome set for patient reported outcome measures.

Citation

Sanal-Hayes, N. E., Mclaughlin, M., Hayes, L. D., Mair, J. L., Ormerod, J., Carless, D., Hilliard, N., Meach, R., Ingram, J., & Sculthorpe, N. F. (in press). A Scoping Review of ‘Pacing’ for Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Lessons Learned for the Long COVID Pandemic. Journal of Translational Medicine, 21, Article 720. https://doi.org/10.1186/s12967-023-04587-5

• Journal Article Type: Review
• Acceptance Date: Oct 3, 2023
• Deposit Date: Sep 29, 2023
• Publicly Available Date: Dec 22, 2023
• Publisher: BioMed Central
• Peer Reviewed: Peer Reviewed
• Volume: 21
• Article Number: 720
• DOI: https://doi.org/10.1186/s12967-023-04587-5
• Keywords: Pacing, Myalgic encephalomyelitis, Chronic fatigue syndrome, Long COVID, Post-exertional malaise
• Public URL: https://hull-repository.worktribe.com/output/4402900