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Epidemiology of paediatric chronic fatigue syndrome in Australia
  1. Sarah Knight1,2,3,
  2. Shane Elders1,
  3. Jill Rodda1,
  4. Adrienne Harvey1,
  5. Lionel Lubitz4,
  6. Kathy Rowe5,
  7. Colette Reveley4,
  8. Sabine Hennel6,
  9. Susan Towns7,
  10. Kasia Kozlowska7,
  11. Donald N Payne8,9,
  12. Sonya Marshall-Gradisnik10,
  13. Adam Scheinberg1,2,3
  1. 1 Neurodisability and Rehabilitation, Murdoch Children’s Research Institute, Melbourne, Australia
  2. 2 Victorian Paediatric Rehabilitation Service, Royal Children’s Hospital Melbourne, Melbourne, Victoria, Australia
  3. 3 Paediatrics, The University of Melbourne, Parkville, Victoria, Australia
  4. 4 Royal Children’s Hospital Melbourne, Parkville, Victoria, Australia
  5. 5 General Medicine, Royal Children’s Hospital Melbourne, Parkville, Victoria, Australia
  6. 6 Victorian Paediatric Rehabilitation, Monash Children’s Hospital, Clayton, Victoria, Australia
  7. 7 Sydney Children’s Hospitals Network Randwick and Westmead, Westmead, New South Wales, Australia
  8. 8 Adolescent Medicine, Princess Margaret Hospital, Perth, Western Australia, Australia
  9. 9 SPACH, UWA, Perth, Western Australia, Australia
  10. 10 Griffith University—Gold Coast Campus, Southport, Queensland, Australia
  1. Correspondence to Dr Sarah Knight, Neurodisability and Rehabilitation, Murdoch Children’s Research Institute, Melbourne 3052, Australia; sarah.knight{at}


Objective To estimate the paediatrician-diagnosed incidence of chronic fatigue syndrome (CFS) in Australia, and describe demographic and clinical features, as well as approaches to diagnosis and management.

Methods The Australian Paediatric Surveillance Unit facilitates monthly national surveillance of uncommon conditions seen by paediatricians. Data from young people aged <18 years diagnosed with CFS were collected. Incidence was estimated based on new cases reported from April 2015 to April 2016.

Results A total of 164 cases of newly diagnosed CFS in young people aged 4–17 years were identified for inclusion. The estimated national incidence for children aged 4–9 years was 0.25 per 100 000 per annum. In children aged 10–17 years, the estimated incidence of paediatrician-diagnosed cases for Victoria (17.48 per 100 000) was substantially greater than other Australian states (range 1.31–5.51 per 100 000). Most cases were female and Caucasian, most commonly presenting after an infectious illness with symptoms gradual in onset. The majority were diagnosed at least 13 months after symptom onset. Symptoms, associations, investigations and management strategies were highly variable.

Conclusions Current findings suggest that, consistent with other countries, the Australian incidence of CFS in children aged <10 years is very low. In contrast, the national incidence of CFS in older children and adolescents (aged 10–17 years) is more unclear, with marked variability between geographical regions apparent. This may be due to variation in service accessibility and clinician understanding of CFS. Accordingly, national initiatives to improve equity of care for children with CFS may be required.

  • chronic fatigue syndrome
  • epidemiology

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  • Contributors SK and AS conceptualised and designed the study, coordinated and supervised data collection and analysis, drafted the initial manuscript and reviewed and revised the manuscript. KR, CR, ST, KK, DNP, LL and SH designed the data collection instrument and reviewed and revised the manuscript. SE and JR carried out the initial analyses, drafted the initial manuscript and reviewed and revised the manuscript. AH conceptualised and designed the study, and critically reviewed the manuscript for important intellectual content. All authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.

  • Funding This study was funded by the Mason Foundation and the Murdoch Children’s Research Institute Government Infrastructure Grant.

  • Competing interests None declared.

  • Ethics approval This study received ethics approval from The Sydney Children’s Hospital Network Human Research Ethics Committee (LNR/14/SCHN/399).

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Data sharing statement Any unpublished data from this study are available on request by emailing the corresponding author.

  • Patient consent for publication Not required.

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