BPSU survey of severe Chronic Fatigue Syndrome/Myalgic Encephalopathy
Research type
Research Study
Full title
Severe Paediatric Chronic Fatigue Syndrome/Myalgic Encephalopathy (CFS/ME): British National Surveillance Study
IRAS ID
223838
Contact name
Esther Crawley
Contact email
Sponsor organisation
University of Bristol
Duration of Study in the UK
2 years, 5 months, 30 days
Research summary
Children with chronic Fatigue Syndrome or myalgic encephalitis (CFS/ME) have persistent disabling fatigue for at least 3 months. The fatigue and symptoms are made worse by activity (post exertional malaise) and are not relived by rest. Children with CFS/ME have other symptoms including muscle aches, headaches, and poor concentration. \nChildren with severe chronic fatigue syndrome or ME are only able to leave their house occasionally (if at all). They have severe fatigue and often severe pain and many require help with daily activities such as eating and washing. At the moment, we do not know how often children develop severe CFS/ME or what treatment they receive. This means the NHS cannot organise treatment for them. \nIn this study, we will ask every children’s doctor in the UK, through the BPSU (British Paediatrial Surveillance Unit), whether they have seen a child that month with severe CFS/ME. We will then ask the doctor about their symptoms, how disabled they are and how long they have been unwell. We want to know what treatment children with severe CFS/ME get and we will ask doctors what treatment children were offered and what treatment they received. We also want to know whether children with severe CFS/ME get better and we will go back to doctors after a year to find out what happened to children in terms of treatment offered and whether they got better (or not). \n
REC name
South West - Central Bristol Research Ethics Committee
REC reference
18/SW/0051
Date of REC Opinion
20 Mar 2018
REC opinion
Further Information Favourable Opinion