Led by: Prof Esther Crawley
Aim: This severe paediatric M.E. surveillance study aims to measure the incidence, demographic and clinical features of severe paediatric M.E. in the UK.
Prof Crawley says: “We will use a national surveillance unit to contact more than 3,400 UK paediatricians and find out whether they have seen a child with severe CFS/M.E. in the previous month. We will collect information including their age, gender, how the child presented, what treatment they received, how long they were unwell and information to determine if other diagnoses have been considered (eg. anxiety, depression, eating disorders).
“All completed questionnaires will be examined by an expert panel to determine whether the diagnoses of severe M.E. is correct or if further information is required. If necessary, we will examine the clinical notes to gather further information or to clarify the diagnosis. This study will tell us how common severe paediatric M.E. is, how it presents, and what treatments are offered. We need to know this for future research, and to help inform current and future service provision.”
Cost: £12,000, made possible by a corporate donation to our Clare Francis Research Fund and match-funding with the University of Bristol.
Length of study: 13 months
Study begins: 2016
Background information: This study was prioritised by our supporters in 2013, when we asked them to vote for the three projects in which they would most like us to invest (in first and second place were studies into immune responses in M.E. and patterns of mitochondrial DNA variation, both of which we have already funded).
Paediatric M.E. is relatively common (0.4 – 2.4% in children) However, the prevalence and incidence of severe paediatric M.E. is unknown. Children with severe M.E. are either unable to carry out any activity for themselves or can carry out only minimal daily tasks such as face washing.
Understanding the epidemiology of severe M.E. is important for future research and for commissioning of specialist NHS services.