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Recovery from chronic fatigue syndrome: a systematic review—heterogeneity of definition limits study comparison
  1. Yasmin Moore1,
  2. Teona Serafimova1,
  3. Nina Anderson1,2,
  4. Hayley King1,
  5. Alison Richards1,3,
  6. Amberly Brigden1,
  7. Parisa Sinai1,
  8. Julian Higgins1,
  9. Caitlin Ascough1,
  10. Philippa Clery1,
  11. Esther M Crawley1,4
  1. 1 Centre for Academic Child Health, University of Bristol Faculty of Health Sciences, Bristol, UK
  2. 2 Pennine Care NHS Foundation Trust, Ashton-under-Lyne, Lancashire, UK
  3. 3 Collaboration for Leadership in Applied Health Research and Care West, National Institute for Health Research, Bristol, UK
  4. 4 Royal United Hospital Bath NHS Trust, Bath, Bath and North East Somerset, UK
  1. Correspondence to Professor Esther M Crawley, Centre for Academic Child Health, University of Bristol Faculty of Medicine and Dentistry, Bristol BS82BN, UK; esther.crawley{at}bristol.ac.uk

Abstract

Background Paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is a common illness with a major impact on quality of life. Recovery is poorly understood. Our aim was to describe definitions of recovery in paediatric CFS/ME, the rate of recovery and the time to recovery.

Methods This systematic review included a detailed search of MEDLINE, EMBASE, PsycInfo and Cochrane Library between 1994 and July 2018. Inclusion criteria were (1) clinical trials and observational studies, (2) participants aged <19 years with CFS/ME, (3) conducted in Western Healthcare systems and (4) studies including a measure of recovery and time taken to recover.

Results Twelve papers (10 studies) were identified, involving 826 patients (range 23–135). Recovery rates were highly varied, ranging between 4.5% and 83%.

Eleven distinct definitions of recovery were used; six were composite outcomes while five used unidimensional outcomes. Outcome measures used to define recovery were highly heterogeneous. School attendance (n=8), fatigue (n=6) and physical functioning (n=4) were the most common outcomes included in definition of recovery. Only five definitions included a personal measure of recovery.

Implications Definitions of recovery are highly variable, likely secondary to differences in study design, outcomes used, follow-up and study populations. Heterogeneous definitions of recovery limit meaningful comparison between studies, highlighting the need for a consensus definition going forward. Recovery is probably best defined from the child’s own perspective with a single self-reported measure. If composite measures are used for research, there should be agreement on the core outcome set used.

  • adolescent health
  • occupational therapy

Data availability statement

No additional data are available. All data discussed here has been published previously.

https://creativecommons.org/licenses/by/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.

https://doi.org/10.1136/archdischild-2020-320196

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    Data availability statement

    No additional data are available. All data discussed here has been published previously.

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    Footnotes

    • Contributors EMC and JH were involved in the conception and design of the article. EMC, AR, AB, YM, NA and PS participated in the literature search and selection. YM, TS, NA, HK, AB, PS, CA and PC made substantial contributions to data acquisition. YM, TS, NA, HK, AB, JH, PS and PC were involved in the analysis and interpretation of the data.

    • Funding EMC was funded by the National Institute for Health Research (Senior Research Fellowship, SRF-2013-06-013).

    • Disclaimer The views expressed in this publication are those of the authors and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.

    • Competing interests EMC is an unpaid medical advisor to The Sussex & Kent ME Society. EMC, one of the authors of this systematic review, was also an author of one of the included papers. However, to avoid a conflict of interest, EMC was not involved in the final study selection or data extraction.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.