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.
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