Objective: Little is known about persistence of or recovery from chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents. Previous studies have small sample sizes, short follow-up or have focused on fatigue rather than CFS/ME or, equivalently, chronic fatigue, which is disabling. This work aimed to describe the epidemiology and natural course of CFS/ME in adolescents aged 13–18 years.
Design: Longitudinal follow-up of adolescents enrolled in the Avon Longitudinal Study of Parents and Children.
Setting: Avon, UK.
Participants: We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years. We use the term ‘chronic disabling fatigue’ (CDF) because CFS/ME was not verified by clinical diagnosis. We used multiple imputation to obtain unbiased estimates of prevalence and persistence.
Results: The estimated prevalence of CDF was 1.47% (95% CI 1.05% to 1.89%) at age 13, 2.22% (1.67% to 2.78%) at age 16 and 2.99% (2.24% to 3.75%) at age 18. Among adolescents with CDF of 6 months duration at 13 years 75.3% (64.0% to 86.6%) were not classified as such at age 16.
Similar change was observed between 16 and 18 years (75.0% (62.8% to 87.2%)). Of those with CDF at age 13, 8.02% (0.61% to 15.4%) presented with CDF throughout the duration of adolescence.
Conclusions: The prevalence of CDF lasting 6 months or longer (a proxy for clinically diagnosed CFS/ME) increases from 13 to 18 years. However, persistent CDF is rare in adolescents, with approximately 75% recovering after 2–3 years.
What is already known on this topic?
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is relatively common and disabling in children and adolescents. Previous studies (typically with small samples) have reported inconsistent estimates of persistence of CFS/ME during adolescence. The long-term prognosis of the condition in those not receiving treatment is not known.
What this study adds?
The prevalence of chronic disabling fatigue (CDF), a proxy for clinically diagnosed CFS/ME, increases during adolescence.
Approximately 25% persist over a 2–3-year follow-up. Only 8% of children with CDF at age 13 had CDF at 16 and 18 years.
Natural course of chronic fatigue syndrome/myalgic encephalomyelitis in adolescents, by Tom Norris, Simon M Collin, Kate Tilling, Roberto Nuevo, Stephen A Stansfeld, Jonathan AC Sterne, Jon Heron, Esther Crawley in Arch Dis Child [Published Online 19 January 2017]