BackgroundPaediatric 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.MethodsThis 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.ResultsTwelve 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.ImplicationsDefinitions 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.

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Aims To describe how recovery from paediatric CFS/ME is defined, how many children recover and how long it takes. Methods We conducted detailed literature searches of MEDLINE, EMBASE, PsycInfo and the Cochrane library, searched trial registration sites, contacted authors if results have not been published and hand searched reference lists. Three categories of search terms were used; paediatric, CFS/ME and recovery. Inclusion criteria Randomised controlled trials or observational studies of participants <19 years old with a diagnosis of CFS/ME, related to a Western Health Care system, some measure of recovery (partial or full) reported and the time taken to reach it. Results 21 papers were identified. The study populations ranged from 1 to 64 participants, their duration of illness ranged from 3 months to 7 years between studies and also showed great variety within each study. Some studies used a single measurement outcome for recovery, others measured several and some integrated multiple outcomes to formulate one value for recovery. The recovery rate ranged from 25–100% in those accessing treatment and 4.5–100% in those without specialist care. School attendance was the most common measurement outcome (n = 11), of which 4 of these combined this with at least one other measure. 7 studies measured physical ability as an outcome, 8 used fatigue and 9 measured a global improvement that was either self-rated or qualitatively assessed by an investigator. 2 studies described recovery as no longer fulfilling the diagnostic criteria. Conclusion Recovery rates are relatively high in children accessing specialist treatment however, the discrepancies between the measurement outcomes, makes interpretation of recovery rates difficult.