Recovery from chronic fatigue syndrome: a systematic review-heterogeneity of definition limits study comparison

Arch Dis Child. 2021 Nov;106(11):1087-1094. doi: 10.1136/archdischild-2020-320196. Epub 2021 Apr 12.


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.

Keywords: adolescent health; occupational therapy.

Publication types

  • Comparative Study
  • Research Support, Non-U.S. Gov't
  • Systematic Review

MeSH terms

  • Adolescent
  • Child
  • Clinical Trials as Topic
  • Consensus
  • Fatigue Syndrome, Chronic / epidemiology
  • Fatigue Syndrome, Chronic / psychology*
  • Female
  • Follow-Up Studies
  • Humans
  • Male
  • Observational Studies as Topic
  • Outcome Assessment, Health Care
  • Quality of Life / psychology*
  • Recovery of Function / physiology*
  • Self Report / standards*
  • Young Adult