Very little is known about the clinical characteristics of young people attending ME/CFS clinics, so the review of cases examined at Haukeland University Hospital, Norway between 2002 and 2011 was interesting to read. Clinicians examined records of children referred over the decade for “fatigue symptoms”, finding 33 eligible cases – not a huge number, but referrals had been growing, with 25 patients referred since 2009. Of the total, 27 received the diagnosis ‘G93.3 post viral fatigue syndrome’, but 6 (18%) received other diagnoses (mainly epilepsy, sleeping disorders and hypothyreosis) – a high initial misdiagnosis rate that mirrors what others have found, as our essay explains.

Symptoms had started at age 11 on average, and in all children had begun after an infection. All tested positive for antibodies to infectious agents, mainly Epstein-Barr virus (74%) but also cytomegalovirus or Borrelia. None of the patients was found to be suffering from anxiety or depression, and most were referred for additional medical investigations, including magnetic resonance imaging of the cerebrum or chest X-ray, which were mostly negative. Intriguingly, 12 young people (44%) were found to be clinically underweight for their age, though whether this was related to their post-viral illness is unknown. The authors report that many of the adolescents had additional gastrointestinal symptoms, which might help explain the low body weight, though another reason could be the loss of muscle mass.

What is missing from this report is any information about outcomes, i.e. who improved or got worse, and what effect any treatment interventions might have had, but perhaps a future study will throw light on this aspect. The authors are correct, however, in calling for European-wide guidelines on the diagnosis, assessment and treatment of young people with post-viral fatigue syndrome – such guidelines are long overdue.

Reference: CFS in Children and Adolescent: Ten Years of Retrospective Clinical Evaluation. Elgen I et al.  Int J Pediatr 2013; 2013: 270373