This article has been edited since publication to acknowledge uncertainties in the figures reported.
ME/CFS can have a particularly devastating impact on the lives of children and young people, affecting their schooling as well as potentially depriving them of many of the activities that should make up a normal childhood.
As in adults, children with the disease vary in their degree of disability and the symptoms they experience. Some are categorised as having severe ME/CFS, which is defined in the UK as fatigue so severe that an individual can carry out only minimal daily tasks, or in some cases be unable to do any activity for themselves.
But how many children are affected by ME/CFS to this degree? And what impact does the disease have on their daily lives?
A recent study conducted by the British Paediatric Surveillance Unit aimed to determine the prevalence of severe ME/CFS in children aged 5 to 16 years, as well as the symptoms they experience and the impact on activities of daily living, including school attendance.
The study was reported in the journal, Archives of Disease in Childhood, where you can read the full paper.
Paediatricians across the UK and Ireland were asked if they had assessed a child with ME/CFS so severe that they had been unable to attend school for more than one hour per week during the last six weeks of the school term. They were also asked to complete a questionnaire on the children’s symptoms, function and treatment.
Prevalence of severe disease
The investigators and an expert panel reviewed the responses to identify individuals who met a surveillance case definition of severe ME/CFS (see the paper for details of this definition). From a total of 285 cases, 33 were classified as having severe ME/CFS, while 4 had probable and 55 had possible severe ME/CFS.
This gave an estimated prevalence of definite severe ME/CFS as 3.2 per million children. These individuals had a median age of 13 years and 58% were girls. Including those with probable or possible severe ME/CFS increased the estimated prevalence to 8.2 per million.
The study was relatively limited in its scope as it looked at only 285 children with ME/CFS in total, although the authors point out that previous studies (which reported a larger prevalence) were conducted in even smaller samples and used different eligibility criteria.
So we cannot be sure that this estimate reflects the true figures for the UK, but there is very little information at all on this neglected group of children.
Whatever the true prevalence of severe ME/CFS in children, its impact on these individuals’ lives is still devastating. From the questionnaire results, the investigators found that these young people are all very disabled, and most receive little or no education. Such an effect on education so early in life can have serious consequences later on in adulthood.
The investigators conclude that paediatricians need to consider how to provide rehabilitation and education replacement for these disabled young people, such as home schooling or novel ME-aware education support.
Here at ME Research UK, we would add that we also need to investigate how to include people with severe illness in biomedical research, so we can understand better how and why ME/CFS develops and progresses in these individuals, and ultimately how to treat it and provide a real cure.