Severe myalgic encephalomyelitis/chronic fatigue syndrome in children and young people: a British Paediatric Surveillance Unit study
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Published on: July 4, 2007
Alexander Peter Royston1, Manmita Rai2, Amberly Brigden3
1Centre for Academic Child Health, University of Bristol Medical School, Bristol, UK ar16623@bristol.ac.uk.
Insights
The study found a low incidence of severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children, with affected individuals experiencing significant disability and limited educational access. Paediatricians must address rehabilitation and education needs for these young patients.
Area of Science:
- Pediatric Health
- Neurology
- Immunology
Background:
- Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) significantly impacts children's quality of life.
- Understanding the prevalence and incidence of severe ME/CFS in pediatric populations is crucial for resource allocation and support.
- Limited data exists on the epidemiological characteristics of severe ME/CFS in children aged 5-16 years.
Purpose of the Study:
- To determine the point prevalence and incidence rate of severe ME/CFS in children aged 5-16 years.
- To describe the demographic features, symptoms, and impact on daily living, school attendance, and time to diagnosis for pediatric ME/CFS cases.
- To inform clinical practice and public health strategies for managing severe ME/CFS in children.
Main Methods:
- A prospective surveillance study was conducted by the British Paediatric Surveillance Unit over 13 months.
- Paediatricians reported on children aged 5-16 years diagnosed with severe ME/CFS, defined by inability to attend school for over 1 hour/week.
- Data collected included demographics, symptoms, functional status, and treatment, applying NICE-recommended criteria and screening blood tests.
Main Results:
- An estimated prevalence of 3.2 per million children for severe ME/CFS was found (8.9 per million including possible/probable severe cases).
- The incidence rate was 0.90 per million children-years (1.97 per million including possible/probable severe cases).
- Median age of affected children was 13 years, 58% were female, and median time to diagnosis was 0.47 years.
Conclusions:
- Despite low incidence, severe ME/CFS in children leads to profound disability and minimal education.
- Paediatricians face challenges in providing adequate rehabilitation and educational support for these severely affected children.
- Further research and clinical guidelines are needed to improve the management and outcomes for pediatric ME/CFS patients.
Objectives:
Primary objective: to determine the point prevalence and incidence rate of severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in children aged 5-16 years over 13 months.
Secondary Objectives:
to describe the demographic features, symptoms, impact on activities of daily living, school attendance and time to diagnosis.
Design:
Prospective surveillance study conducted by the British Paediatric Surveillance Unit. Paediatricians was asked if they had assessed a child with severe ME/CFS (screening definition for prevalence and incidence: children (5-16 years) diagnosed with ME/CFS so severe that they are unable to attend school for more than 1 hour a week during the last 6 weeks of the school term).
Participants:
Patients 5-16 years of age, seen by paediatricians and two large ME/CFS specialist services across the UK and Ireland.
Outcome Measures:
Paediatrician-completed questionnaires describing demographics, symptoms, function and treatment, (applying National Institute for Health and Care Excellence (NICE)-recommended criteria to assess severity of ME/CFS). Diagnosis of severe, probable severe or possible severe ME/CFS was made only with evidence of NICE-recommended screening blood tests.
Results:
285 cases were reported, of which of which 33 were severe, 4 probable severe and 55 possible severe. Estimated prevalence was 3.2 per million children (95% CI 2.2 to 4.5). Including possible/probable severe ME/CFS gave 8.9 per million children (95% CI 7.2 to 11). The incidence rate was 0.90 per million children-years (95% CI 0.43 to 1.65) (1.97 per million children-years (95% CI 1.24 to 2.99)). Median age was 13 years and 58% of cases were female. Median time to diagnosis was 0.47 years.
Conclusions:
Although the incidence of children presenting with severe ME/CFS is low, all were very disabled. In addition, the majority receive little or no education. Paediatricians need to consider how to provide rehabilitation and education for these disabled young people.
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