Abstract
Aim: To determine the reported duration of illness, the functional and educational long-term outcomes, predictive factors for recovery and seek feedback regarding management in pediatric/adolescent myalgic encepahalomyelitis/chronic fatigue syndrome (ME/CFS).Methods: A cohort observational study of 784 young people, mean age 14.6 (6–18) years, with ME/CFS diagnosed at a specialist pediatric hospital and receiving regular care, was conducted with follow-up for a mean 8 (range 1–21) years after onset. Baseline symptoms, history, depression and anxiety questionnaires were available from 418. The remaining 366, did not have similar standardized baseline information. Questionnaires requested functional rating, persistent symptoms, duration of illness if “recovered,” social engagement and school/work attendance. Feedback was sought regarding management, support services, useful information, helpful interventions or personnel and use of alternative therapies. Reported recovery and function were compared with baseline information and between the two groups.Results: Follow-up data were returned from 81.8%. There was no significant difference in functional score (if reported recovery) or illness duration related to provision of baseline data. The mean duration of illness was 5 (range 1–15) years in the 50% who reported recovery. By 5 years 38% and by 10 years 68% reported recovery. At 10 years the mean functional score was 8/10 (range 2–10) with 5% scoring <6. Depression, anxiety or severity of illness at diagnosis was not predictive of non-recovery. Designing and monitoring their own management plan that included educational, social, physical and enjoyable activities, as well as having symptom management and understanding professionals were highly valued. However, remaining engaged in an education system that flexibly accommodated their illness and aspirations was consistently reported as crucial for long term functioning.Conclusions: ME/CFS in young people has a mean duration of 5 years (1–15) with 68% reporting recovery by 10 years. All improved functionally with 5% remaining very unwell and a further 20% significantly unwell. There were no obvious baseline predictors for recovery. However, depression, anxiety, orthostatic intolerance and to a lesser extent pain at follow up were identified as hampering recovery or function. Supportive professionals, remaining engaged in education and management strategies were identified as helpful.
Highlights
Questions that either parents or young people ask soon after receiving a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are: “how long will the illness last”; “is there way of telling whether they will recover,” and “what can be done to manage the illness in the best way possible?”ME/CFS is a condition of unknown etiology that commonly follows an infection in young people
Challenges to providing answers to these questions include: confirming that those followed up have a diagnosis of ME/CFS not just fatigue; ensuring that the maximum proportion of those who are diagnosed are included in the follow up; having a range of severity at diagnosis; and having an adequate cohort size with regular follow up, for sufficient length of time, in order to be confident that a realistic estimate has been obtained
The aims of this study were: [1] to document the long term functional and educational outcomes of a cohort of 784 young people with ME/CFS, 418 of whom provided standardized baseline medical and psychological information and additional follow up data on up to 6 occasions, 2–16 years after diagnosis; [2] to determine the duration based on self-reported recovery including the proportion reporting recovery at 5 and 10 years; [3] to identify any predictors of recovery based on baseline information obtained, and [4] to obtain feedback regarding useful management
Summary
Questions that either parents or young people ask soon after receiving a diagnosis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) are: “how long will the illness last”; “is there way of telling whether they will recover,” and “what can be done to manage the illness in the best way possible?”. ME/CFS is a condition of unknown etiology that commonly follows an infection in young people. There is a new onset of fatigue that has been present for at least 3–6 months and is not relieved by rest and not explained by other medical conditions. Young people in early adult life are mobile, move away from home and frequently change their name, or transition to adult services, so following up a pediatric cohort has added challenges
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