Natural course of chronic fatigue syndrome/myalgic encephalomyelitis in adolescents

Abstract

ObjectiveLittle 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.DesignLongitudinal follow-up of adolescents enrolled in the Avon Longitudinal Study of Parents and Children.SettingAvon, UK.ParticipantsWe 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.ResultsThe 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.ConclusionsThe 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.

Psychological and demographic factors associated with fatigue and social adjustment in young people with severe chronic fatigue syndrome/myalgic encephalomyelitis: a preliminary mixed-methods study

“…As can be seen in Table 2, at T1, participants reported mean scores on the social adjustment scale which surpassed the clinical cut-off threshold of 20 and indicated a moderately severe or worse level of psychopathology (Mundt et al, 2002). They also reported a mean fatigue score which surpassed the cut-off score of 19 out of 33 reported by Norris et al (2017) for chronic disabling fatigue (a proxy for clinician-diagnosed chronic fatigue syndrome). Similarly, participants also reported high levels of fatigue on the fatigue visual analogue scale.…”

“…Research evidence on the trajectory and prognosis of CFS/ME in young people is inconclusive (Gill et al, 2004;Norris et al, 2017;Rangel et al, 2000;Rimes et al, 2007;Sankey et al, 2006). However it has been suggested that CFS/ME should be treated early in order for patients to receive the best outcome (Burgess & Chalder, 2011;Sankey et al, 2006).…”

Sleep quality moderates the association between physical activity frequency and feelings of energy and fatigue in adolescents

“…The prevalence of fatigue appears to increase as adolescents age. The Avon Longitudinal Study of over 4000 adolescents found that disabling fatigue of greater than six months duration increased from 1.47% to 2.99% between the age of 13 to 18 years [11]. …”

FITNET’s Internet-Based Cognitive Behavioural Therapy Is Ineffective and May Impede Natural Recovery in Adolescents with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. A Review

“…Crossing over from internet-based CBT to usual care or vice versa, did not influence recovery rates. The trial did not take into account the widely reported spontaneous recovery in adolescents with CFS ( Table 1 ) [ 35 , 36 , 37 , 38 , 39 , 40 , 41 , 42 , 43 , 44 ], which is similar to or better than the reported recovery rates in this trial. That is without taking into account the problems with the post hoc definition of recovery used by the FITNET trial which was tailor-made to fit the results yet was so wide that it included the severely fatigued/ill.…”

“…This is similar to the findings by Rangel et al who found that at a mean follow-up of 38 months, 67% of severely affected patients had recovered [ 40 ] as can be seen in Table 1 . And finally, a recent study by Norris et al (co-authored by the principle investigator of the NHS FITNET trial) entitled “Natural course of chronic fatigue syndrome/myalgic encephalomyelitis in adolescents”, concluded that approximately 75% of adolescents who do not receive treatment will recover after 2–3 years [ 41 ].…”