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Background: Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is a disabling condition posing a major health problem for a subset of adolescents in Norway and other industrialized countries. What it is like to live with CFS/ME in adolescents is poorly understood and has not been thoroughly explored. Objective: The purpose of this narrative review is to provide an overview of CFS/ME as a serious health condition in adolescents. Aspects covered include condition duration, disability level, treatment, diagnostics, and disease mechanisms. The review is also aimed at highlighting the adolescents’ own experiences of living with the disorder. Methods: The databases PubMed, MEDLINE, and Google Scholar were searched from 1990 to 2015 using the reported search terms. In addition, reference lists of relevant articles from the search were screened for additional relevant articles. Discussion: Studies show that CFS/ME in adolescents usually lasts three years, the disability is severe, and treatment options are limited. There is disagreement on diagnostic criteria and disease mechanisms. However, evidence suggests that the condition may be explained by a sustained arousal response that is triggered by infections and/or critical life events interacting with predisposing factors and learning. Qualitative interviews suggest that adolescents with CFS/ME feel as if their life is put on hold. This core theme was supported by six subthemes: (1) Adolescents with CFS/ME feel locked in their homes and shut out; (2) Not being able to attend school seems to make afflicted individuals worry about missing school work; (3) Many feel different from the person they used to be; (4) Many struggle to be recognized as ill; Despite these challenges, some patients appear to (5) envision a better future and (6) experience personal growth. Conclusion: In conclusion, CFS/ME is a serious disorder with detrimental impact on functioning and emotional well-being. Living with CFS/ME is filled with difficult emotions and thoughts that might be equally, or even more, painful than the physical pain. This was the first review of what it is like for adolescents to live with the disorder. The results underscore the importance of listening to their stories to provide them with more effective help. Finally, the patients are in need of both better assessment and treatment.

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