Children and Young Adults with ME/CFS Voice Unmet Care Needs

Young people living with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and their parents in Germany have described in their own words what they most need from the healthcare system, according to a qualitative study published in BMC Public Health. The disease is described by the researchers as a complex, multi-system illness that significantly deteriorates quality of life, and there is currently no established effective treatment. The study aimed to identify the needs of affected children, adolescents, and young adults and their parents as a basis for building a tailored treatment model for this age group.

The research team recruited 14 young people with ME/CFS aged between 12 and 25 years, together with 18 parents. Five patients joined an online focus group spanning five sessions, each dedicated to one topic area: sports, physical activity and mobility; self-care; mental activity; social contacts; and school, vocational training, study, or profession. Nine further participants answered the same stimuli and questions through an adaptive diary approach, receiving and responding to voice and text messages instead of attending live sessions. Parents took part in three focus groups of two sessions each, one addressing the needs of their children and one their own needs as caregivers, with three couples participating jointly.

All material was analysed using reflexive thematic analysis. In the patient sample, four themes of unmet needs emerged. First, participants did not want to be left alone with the disease. Second, they called for flexibility and understanding from healthcare providers and authorities. Third, they wished to have to explain themselves less to others. Fourth, participants expressed appreciation of the family filling part of the healthcare gap.

The parental focus groups produced four themes that overlapped clearly with those of their children. Parents likewise reported not wanting to be left alone with the disease, and they emphasized the need for healthcare adapted to ME/CFS. They further highlighted a need for knowledge, understanding, and acceptance of ME/CFS, and they expressed a need for confidence in dealing with the illness.

The convergence between the two groups is a central finding of the study. Patients and parents articulated demands that map onto one another, which the authors interpret as demonstrating the importance of a needs-based adaptation of healthcare services for this population. Because the study was designed to generate groundwork for a tailored treatment model, these themes are intended to serve as building blocks for future service design rather than as endpoints in themselves.

Several methodological features shape how the findings should be read. The sample was small, comprising 14 patients and 18 parents recruited in Germany, and participation was restricted to those able to engage in online focus groups or a messaging-based diary. As a qualitative study, it identifies themes and illustrates experiences; it does not measure the prevalence of these needs across the wider ME/CFS population, nor does it test whether any intervention addressing them improves outcomes. The published version is an early, peer-reviewed accepted article carrying a permanent DOI, subject to further edits before the final version of record appears.

Even with those limitations, the study offers a structured account of what young patients and their caregivers themselves prioritize. The recurring demands, for not being left alone, for flexible and ME/CFS-adapted care, for knowledge and acceptance, and for recognition of the informal care families provide, describe gaps in a disease without established effective treatment. By documenting these needs directly from affected families, the researchers provide an evidence base intended to inform the development of age-appropriate care for young people with ME/CFS.

Subject of Research: Unmet healthcare needs of children, adolescents, and young adults with ME/CFS and their parents in Germany

Article Title: Which needs do children, adolescents, and young adults with ME/CFS and their parents express and feel? – Qualitative study in Germany

Article References: Kircher, A., Mayer-Huber, S., Eberhartinger, M., Mihatsch, L., Apfelbacher, C., Stojanov, S., & Behrends, U. (2026). Which needs do children, adolescents, and young adults with ME/CFS and their parents express and feel? – Qualitative study in Germany. BMC Public Health, 26(1), Article 2942. https://doi.org/10.1186/s12889-026-29549-6

Image Credits: AI Generated

DOI: 10.1186/s12889-026-29549-6

Keywords: ME/CFS, chronic fatigue syndrome, qualitative study, focus groups, reflexive thematic analysis, caregivers, unmet needs, healthcare services, Germany, BMC Public Health, patient perspectives, needs