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      A scoping review of ‘Pacing’ for management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): lessons learned for the long COVID pandemic

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          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. Whilst a definitive definition of pacing is not unanimous within the literature or healthcare providers, it typically comprises 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 17 included 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, our results suggest future studies should be RCTs utilising objectively quantified digitised pacing, over a longer duration of examination (i.e. longitudinal studies), using the core outcome set for patient reported outcome measures. Until these are completed, the literature base is insufficient to inform treatment practises for people with ME/CFS and long COVID.

          Supplementary Information

          The online version contains supplementary material available at 10.1186/s12967-023-04587-5.

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          Most cited references91

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          PRISMA Extension for Scoping Reviews (PRISMA-ScR): Checklist and Explanation

          Scoping reviews, a type of knowledge synthesis, follow a systematic approach to map evidence on a topic and identify main concepts, theories, sources, and knowledge gaps. Although more scoping reviews are being done, their methodological and reporting quality need improvement. This document presents the PRISMA-ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist and explanation. The checklist was developed by a 24-member expert panel and 2 research leads following published guidance from the EQUATOR (Enhancing the QUAlity and Transparency Of health Research) Network. The final checklist contains 20 essential reporting items and 2 optional items. The authors provide a rationale and an example of good reporting for each item. The intent of the PRISMA-ScR is to help readers (including researchers, publishers, commissioners, policymakers, health care providers, guideline developers, and patients or consumers) develop a greater understanding of relevant terminology, core concepts, and key items to report for scoping reviews.
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            Scoping studies: towards a methodological framework

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              Systematic review or scoping review? Guidance for authors when choosing between a systematic or scoping review approach

              Background Scoping reviews are a relatively new approach to evidence synthesis and currently there exists little guidance regarding the decision to choose between a systematic review or scoping review approach when synthesising evidence. The purpose of this article is to clearly describe the differences in indications between scoping reviews and systematic reviews and to provide guidance for when a scoping review is (and is not) appropriate. Results Researchers may conduct scoping reviews instead of systematic reviews where the purpose of the review is to identify knowledge gaps, scope a body of literature, clarify concepts or to investigate research conduct. While useful in their own right, scoping reviews may also be helpful precursors to systematic reviews and can be used to confirm the relevance of inclusion criteria and potential questions. Conclusions Scoping reviews are a useful tool in the ever increasing arsenal of evidence synthesis approaches. Although conducted for different purposes compared to systematic reviews, scoping reviews still require rigorous and transparent methods in their conduct to ensure that the results are trustworthy. Our hope is that with clear guidance available regarding whether to conduct a scoping review or a systematic review, there will be less scoping reviews being performed for inappropriate indications better served by a systematic review, and vice-versa.
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                Author and article information

                Contributors
                jamair@ethz.ch
                Journal
                J Transl Med
                J Transl Med
                Journal of Translational Medicine
                BioMed Central (London )
                1479-5876
                14 October 2023
                14 October 2023
                2023
                : 21
                : 720
                Affiliations
                [1 ]Sport and Physical Activity Research Institute, School of Health and Life Sciences, University of the West of Scotland, ( https://ror.org/04w3d2v20) Glasgow, UK
                [2 ]GRID grid.514054.1, ISNI 0000 0004 9450 5164, Future Health Technologies, , Singapore-ETH Centre, Campus for Research Excellence and Technological Enterprise (CREATE), ; Singapore, Singapore
                [3 ]Saw Swee Hock School of Public Health, National University of Singapore, ( https://ror.org/01tgyzw49) Singapore, Singapore
                [4 ]Long COVID Scotland, 12 Kemnay Place, Aberdeen, UK
                [5 ]Physios for ME, London, UK
                [6 ]School of Education and Social Sciences, University of the West of Scotland, ( https://ror.org/04w3d2v20) Glasgow, UK
                [7 ]School of Health and Society, University of Salford, ( https://ror.org/01tmqtf75) Salford, UK
                [8 ]School of Sport, Exercise & Rehabilitation Sciences, University of Hull, ( https://ror.org/04nkhwh30) Hull, UK
                Author information
                http://orcid.org/0000-0002-1466-8680
                Article
                4587
                10.1186/s12967-023-04587-5
                10576275
                37838675
                af1c2422-593a-4ee2-9bed-7647d6311928
                © BioMed Central Ltd., part of Springer Nature 2023

                Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated in a credit line to the data.

                History
                : 30 June 2023
                : 3 October 2023
                Funding
                Funded by: FundRef http://dx.doi.org/10.13039/501100000272, National Institute for Health and Care Research;
                Award ID: COV/LTE/20/08
                Award Recipient :
                Funded by: Swiss Federal Institute of Technology Zurich
                Categories
                Review
                Custom metadata
                © BioMed Central Ltd., part of Springer Nature 2023

                Medicine
                pacing,myalgic encephalomyelitis,chronic fatigue syndrome,long covid,post-exertional malaise

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