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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 illness onset.

Methods: Between January 1984 and December 1987, 46 children and adolescents developed an illness suggestive of chronic fatigue syndrome. Follow-up questionnaires were obtained from 35 participants an average of 13 years after illness onset. Data were obtained concerning subsequent medical diagnoses, amount of school missed, presence and severity of current symptoms, and subjective assessment of degree of illness resolution.

Results: Of the 35 participants, 24 were female (68.6%) and 11 were male (31.4%). 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 participant received an alternative medical diagnosis that could have explained the symptom complex between illness onset and follow-up. Thirteen participants (37.1%) considered themselves resolved of illness at follow-up; 15 participants (42.9%) considered themselves well but not resolved; 4 (11.4%) considered themselves chronically ill, and 3 (8.6%) considered themselves more ill than during the early years of illness. Correlations with the Medical Outcomes Study Short Form Health Survey was good for current level of symptoms and degree of recovery. Eight participants (22.9%) missed >2 years of school, and 5 were still ill at follow-up. Amount of school missed correlated with both illness severity at follow-up and perceived social impact of the illness.

Conclusions: This data demonstrate the presence of an illness consistent with the current definition of chronic fatigue syndrome. Eighty percent of children and adolescents affected had a satisfactory outcome from their fatiguing illness, although the majority of these participants had mild to moderate persisting symptoms. Twenty percent of participants remain ill with significant symptoms and activity limitation 13 years after illness onset. Chronic fatigue syndrome in children and adolescents may result in persistent somatic symptoms and disability in a minority of those affected. Key words: chronic fatigue syndrome, pediatric chronic fatigue syndrome.

From *Primary Care Paediatrics, Lyndonville, New York, and the University of Illinois at Chicago, Chicago, Illinois.
Copy (C) 2001 by the American Academy of Pediatrics (Disclaimer)

David S. Bell, MD, Karen Jordan, and Mary Robinson: Thirteen-year follow-up of children and adolescents with chronic fatigue syndrome.Pediatrics 2001 May;107(5):994-8 Journal of Pediatrics

Notes from Dr. Bell's lecture at the 1999 AYME conference are available at the following link. Association of Youth with M.E.