Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome

Objective. To describe the educational, social, and symptomatic outcome of children and adolescents with chronic fatigue syndrome 13 years after illne ss onset. Methods. Between January 1984 and December 1987, 46 children and adolescent s developed an illness suggestive of chronic fatigue syndrome. Follow-up qu estionnaires were obtained from 35 participants an average of 13 years afte r illness onset. Data were obtained concerning subsequent medical diagnoses , amount of school missed, presence and severity of current symptoms, and s ubjective assessment of degree of illness resolution. Results. Of the 35 participants, 24 were female (68.6%) and 11 were male (3 1.4%). Average age at illness onset was 12.1 years. Eight participants (22. 9%) had an acute onset of symptoms, 27 (77.1%) had a gradual onset. No part icipant received an alternative medical diagnosis that could have explained the symptom complex between illness onset and follow-up. Thirteen particip ants (37.1%) considered themselves resolved of illness at follow-up; 15 par ticipants (42.9%) considered themselves well but not resolved; 4 (11.4%) co nsidered themselves chronically ill; and 3 (8.6%) considered themselves mor e ill than during the early years of illness. Correlation with the Medical Outcomes Study Short Form Health Survey was good for current level of sympt oms and degree of recovery. Eight participants (22.9%) missed >2 years of s chool, and 5 of these were still ill at follow-up. Amount of school missed correlated with both illness severity at follow-up and perceived social imp act of the illness. Conclusions. These data demonstrate the presence of an illness consistent w ith the current definition of chronic fatigue syndrome. Eighty percent of c hildren and adolescents affected had a satisfactory outcome from their fati guing illness, although the majority of these participants had mild to mode rate persisting symptoms. Twenty percent of participants remain ill with si gnificant symptoms and activity limitation 13 years after illness onset. Ch ronic fatigue syndrome in children and adolescents may result in persistent somatic symptoms and disability in a minority of those affected.