Moss, Jill · Journal of child health care : for professionals working with children in the hospital and community · 2005 · DOI
Children and young people with ME/CFS often have difficulty explaining what activities they can or cannot do on any given day, making it hard for parents and doctors to understand their abilities. Researchers worked with 251 young people from a ME support organization to create a simple 0-100% scale that young people themselves helped design and test. The result was a practical tool that 99% of young people felt accurately measured their functional abilities.
This study addresses a critical gap in ME/CFS assessment by centering the voices of young patients themselves in designing measurement tools. Having a validated, patient-approved functional ability scale improves clinical assessment, supports shared decision-making in care, and may enhance research by providing a consistent way to measure symptom impact across pediatric populations.
This study does not establish the scale's reliability, validity, or responsiveness to clinical change—these are separate psychometric properties not addressed in this methods paper. The high acceptability rating indicates the scale is 'workable' but does not prove it accurately measures functional ability or predicts clinical outcomes. The study does not compare this scale's performance against other existing measures.
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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