Abstract
Children with Chronic Fatigue Syndrome (CFS/ME) have severe fatigue that is disabling and has lasted longer than 3 months.1 It is made worse by exercise or other activities and is associated with a variety of symptoms including: muscle aches and pains, headaches, and poor concentration.1 Occasionally children are severely affected which means that they are unable to attend school and rarely leave the house. They often spend most of their time in bed, and can find light and noise are painful.1 Usually they are unable to do most activities for themselves and may need a wheelchair.
This is different to children with mild or moderate CFS/ME who will be able to do carry out most normal childhood activities and are attending at least some school.1 Little is known about this group of children because it is rare and making a diagnosis requires a medical assessment. This means that studies that look for this in the population need to be both very large and have medical assessments.
In our study using the Avon Longitudinal Study in Parents and Children we found 5/5271 children who were unable to leave the house because of tiredness.2 However, we do not know whether these children had CFS/ME or other conditions as they had not been assessed by a doctor. Using centralised school records to identify these children (which we have done previously for epidemiological studies3) is no longer possible as centralised attendance records are no longer held.
The literature that is available suggests that once children become housebound and stop going to school for more than 6 weeks, recovery and return to school is slow. Unpublished data from our cohort suggest that approximately 18% will recover eventually and a further 18% will attend some school. These figures are based on follow up that occurred between 8 and 35 months after assessment. This suggests that once children have been at home housebound for weeks, they are unlikely to fluctuate between attending school and being housebound within a short period of time. Because these children are unable to attend school, they need home tuition to fulfil their statutory right to education.
We have chosen the BPSU as all children with medical symptoms who are unable to attend school will be seen by a paediatrician. This is because these children need a paediatric assessment prior to home tuition being provided by the local authority. Most of these children will not be seen by a child psychiatrist and therefore this study is not possible with CAPSS (Child and Adolescent Psychiatry Surveillance System).
Principal Investigator Professor Esther Crawley
Centre of Child and Adolescent Health, University of Bristol, 1-5 Whiteladies Road, Bristol BS8 1NU