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Original article
Natural course of chronic fatigue syndrome/myalgic encephalomyelitis in adolescents
  1. Tom Norris1,2,
  2. Simon M Collin1,2,
  3. Kate Tilling2,
  4. Roberto Nuevo3,
  5. Stephen A Stansfeld4,
  6. Jonathan AC Sterne2,
  7. Jon Heron2,
  8. Esther Crawley1,2
  1. 1Centre for Child and Adolescent Health, University of Bristol, Bristol, UK
  2. 2School of Social & Community Medicine, University of Bristol, Bristol, UK
  3. 3CIBER Epidemiología y Salud Pública (CIBERESP), Instituto de Salud Carlos III, Madrid, Spain
  4. 4Wolfson Institute of Preventive Medicine, Queen Mary University of London, UK
  1. Correspondence to Dr Esther Crawley, Centre for Child and Adolescent Health, School of Social and Community Medicine, University of Bristol, Oakfield House, Oakfield Grove, Clifton, Bristol BS8 2BN, UK; esther.crawley{at}bristol.ac.uk

Abstract

Objective Little is known about persistence of or recovery from chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) in adolescents. Previous studies have small sample sizes, short follow-up or have focused on fatigue rather than CFS/ME or, equivalently, chronic fatigue, which is disabling. This work aimed to describe the epidemiology and natural course of CFS/ME in adolescents aged 13–18 years.

Design Longitudinal follow-up of adolescents enrolled in the Avon Longitudinal Study of Parents and Children.

Setting Avon, UK.

Participants We identified adolescents who had disabling fatigue of >6 months duration without a known cause at ages 13, 16 and 18 years. We use the term ‘chronic disabling fatigue’ (CDF) because CFS/ME was not verified by clinical diagnosis. We used multiple imputation to obtain unbiased estimates of prevalence and persistence.

Results The estimated prevalence of CDF was 1.47% (95% CI 1.05% to 1.89%) at age 13, 2.22% (1.67% to 2.78%) at age 16 and 2.99% (2.24% to 3.75%) at age 18. Among adolescents with CDF of 6 months duration at 13 years 75.3% (64.0% to 86.6%) were not classified as such at age 16. Similar change was observed between 16 and 18 years (75.0% (62.8% to 87.2%)). Of those with CDF at age 13, 8.02% (0.61% to 15.4%) presented with CDF throughout the duration of adolescence.

Conclusions The prevalence of CDF lasting 6 months or longer (a proxy for clinically diagnosed CFS/ME) increases from 13 to 18 years. However, persistent CDF is rare in adolescents, with approximately 75% recovering after 2–3 years.

  • Chronic Fatigue Syndrome
  • CFS/ME
  • ALSPAC
  • Adolescent Health
  • Longitudinal

This is an Open Access article distributed in accordance with the terms of the Creative Commons Attribution (CC BY 4.0) license, which permits others to distribute, remix, adapt and build upon this work, for commercial use, provided the original work is properly cited. See: http://creativecommons.org/licenses/by/4.0/

https://doi.org/10.1136/archdischild-2016-311198

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    Footnotes

    • Contributors All authors are responsible for the reported research in this manuscript, and all authors have participated in the concept and design, analysis and interpretation of data, drafting or revising of the manuscript, and have approved the manuscript as submitted. TN and EC had full access to all of the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis.

    • Funding This research was specifically funded by the UK MRC (Grant ref: MR/K020269/1).

    • Disclaimer The MRC had no role in the design and conduct of the study; collection, management, analysis and interpretation of the data; and preparation, review or approval of the manuscript; and decision to submit the manuscript for publication.

    • Competing interests TN is funded by an MRC research grant (MR/K020269/1); SC is funded by an NIHR Postdoctoral Fellowship (PDF-2013-06-011); EC is funded by an NIHR Senior Research Fellowship (SRF-2013-06-013); JH is funded by a number of grants, mainly the MRC and Kate Tilling is HEFCE-funded. JS is funded by National Institute for Health Research Senior Investigator award NF-SI-0611-10168. This study was supported by an MRC research grant (MR/K020269/1). EC is a medical advisor for the Association of Young People with ME (AYME) and the Sussex & Kent ME/CFS Society.

    • Ethics approval ALPSAC Ethics and Law Committee and the Local Research Ethics Committees.

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