Investigating the epidemiology of CFS/ME in children using the ALSPAC cohort.

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CONTEXT: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in adolescents is relatively common and causes significant suffering. 1% of secondary school children miss one day a week because of CFS/ME, and 0.1% are so severely affected they are unable to attend school at all. More than half of children are bed bound at some stage, losing on average one academic year of schooling. Despite the importance of paediatric CFS/ME to those affected, their families and society, little is known about how common CFS/ME is in adolescents, what causes it and what the chances are of an adolescent recovering without treatment. In addition, little is known about the different types of CFS/ME in adolescents. If there are different types, these may suggest different causes and may need different treatments. So far, researchers have been hampered in their research in to the causes of CFS/ME because this needs reliable information about children before they develop CFS/ME.These type of studies also need to be large enough to answer these types of questions. This lack of knowledge prevents the development of interventions to prevent or treat paediatric CFS/ME in adolescents. The MRC understands the importance of understanding the mechanisms of CFS/ME in children and knowing more about the different types, and have asked researchers for studies to investigate these areas in the recent CFS/ME highlight notice.The Avon Longitudinal Study of Parents and Children (ALSPAC) provides a unique opportunity to investigate the risk factors for CFS/ME. It has enough data so that we can define CFS/ME at 3 ages (13, 16 and 17). Information on possible risk factors has been collected before the onset of CFS/ME from pregnancy to adolescence, and the number of children is sufficiently large that there is enough power to explore the causes of CFS/ME in adolescence in unprecedented detail. AIM: to describe CFS/ME in adolescence in order to understand more about the mechanisms that cause it and develop ideas on how to treat and prevent CFS/ME in this age group. OBJECTIVES1. Find out how common CFS/ME is at 15 and 17 and whether it is more common in girls or boys. Describe whether CFS/ME in adolescents gets better if untreated. 2. Investigate the different types of CFS/ME in adolescents and whether it overlaps with chronic pain disorders which have similar features. 3. Investigate risk factors for CFS/ME at 13, 16 and 17 years. We will investigate factors that have been shown to be associated with CFS/ME in either adults or children such as activity, patterns of sleep, anxiety and depression and see whether they increase the risk of developing CFS/ME or are secondary to it. 4. Investigate "maintaining factors". We will compare children who have persistent fatigue between the time points with those that recover, to understand whether there is a difference in risk factors between the two groups. POTENTIAL APPLICATIONS AND BENEFITS: Clinicians and commissioners need to know how common adolescent CFS/ME to be able to plan CFS/ME services. Knowing whether CFS/ME gets better without treatment is important for clinicians, adolescents with CFS/ME and their carers who need to decide whether to have treatment. Information on the different types of CFS/ME is important as it may help us understand more about the mechanisms involved in different types. If there are different types of CFS/ME, it is important that researchers know this so they can study the same type of illness if they need to. Understanding what the risk factors are for CFS/ME should help researchers know more about the mechanisms that cause CFS/ME and prevent recovery. This should help researchers develop better treatment and prevention trials.