Severe chronic fatigue syndrome / myalgic encephalitis (CFS/ME)
This BPSU study collected information on all young people aged between five and 16 years who received a diagnosis of severe Chronic Fatigue Syndrome or Myalgic Encephalitis (CFS/ME). The study aimed to explore how many young people across the UK and Ireland have severe CFS/ME, the length of time from symptom onset to diagnosis and how the condition is managed in clinical services.
Overview
Children with chronic fatigue syndrome or myalgic encephalitis (CFS/ME) have persistent disabling fatigue for at least three months. The fatigue is made worse by activity and is not relieved by rest. Children with CFS/ME have other symptoms including muscle aches, headaches, and poor concentration.
Children with severe CFS/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.
This study asked every children’s doctor in the UK 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).
Investigators
Professor Esther Crawley
Centre of Child and Adolescent Health, University of Bristol
1-5 Whiteladies Road
Bristol BS8 1NU
Email: esther.crawley@bristol.ac.uk
Published papers
Royston AP, Burge S, Idini I, Brigden A, Pike KC. Management of severe ME/CFS in children and young people in the UK: a British Paediatric Surveillance Unit study. BMJ Paediatr Open. 2024;8(1):e002436. doi:10.1136/bmjpo-2024-002436.
Duration
February 2018 – February 2019