Tenhave, A, Bognar, R, Sidis, A · Psychology, health & medicine · 2025 · DOI
This study interviewed 13 young people (ages 16-25) with ME/CFS about what it's like growing up with this illness. The researchers found that participants struggled with three main challenges: gaining independence in ways different from their healthy peers, figuring out who they are when illness changes their plans, and feeling isolated even when around other people. The study suggests that mental health support could help young people with ME/CFS build confidence, explore their identity, and stay psychologically healthy during these critical years.
Young people with ME/CFS face unique developmental challenges during critical years of identity formation and independence-building. This study amplifies patient voices and highlights that psychological and psychosocial support—not just medical management—may be essential to healthy development. Understanding these experiences can help clinicians and families provide more holistic, appropriate care to this vulnerable population.
This qualitative study does not prove that psychological interventions will improve ME/CFS symptoms or health outcomes—it identifies areas where support may help. It does not establish causation between ME/CFS and mental health difficulties, nor does it compare outcomes across different treatment approaches. The findings reflect experiences in one Australian clinic and may not generalize to all young people with ME/CFS globally.
About the PEM badge: “PEM required” means post-exertional malaise was an explicit required diagnostic criterion for participant inclusion in this study — not that PEM was studied, observed, or discussed. Studies using criteria that do not require PEM (e.g. Fukuda, Oxford) are tagged “PEM not required”. How the atlas works →
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