This severe paediatric M.E. surveillance study, Prof Esther Crawley 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.”
The £6,000 with which Action for M.E. funded this study was contributed by a private corporate donor with a specific interest in seeing the alleviation of childhood suffering. This sum was match-funded by University of Bristol.
Since we announced funding in 2017, the research team has been establishing the necessary ethical and other approvals required to enable the study to start. During this time, Prof Crawley has found alternative funding that still allows the study to do ahead and enables Action for M.E. to utilise the funding to instead grow our vital support services for children and young people with M.E. and their families.
For this reason, by mutual agreement with the University of Bristol, Action for M.E. has terminated our contract to fund this study. Following discussion and agreement with our donor, we will now use their generous £6,000 gift to ensure our expert Children’s Services team can reach even more children and families living with M.E.