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. 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.
Subject(s)
Learning Disabilities , Headache Disorders, Primary , Fatigue Syndrome, ChronicABSTRACT
Researchers from around the world have been rapidly mobilised to study the effects of the coronavirus pandemic on health behaviours, including physical activity. However, due to the speed at which physical and social distancing restrictions have been imposed, it has been impossible to obtain large-scale, device-based, data in order to understand the effect of the pandemic on physical activity levels. This situation highlights the pressing need for accurate, remote, and scalable methods to not only monitor, but support PA behaviour in the wider population.Existing data from wearable activity trackers could be the answer. These data can be obtained retrospectively to provide a clearer picture of the impact of the pandemic and could also be used more generally as a method to understand population-level physical activity levels. In this commentary we aim to highlight the potential benefits, as well as the limitations, of using existing data from wearable activity trackers to understand large-scale physical activity patterns and stimulate discussion amongst the scientific community on what the future holds with respect to physical activity measurement and surveillance.