Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) poses challenges for affected children and young people (CYP) and their parents. There is often a lack of knowledge about the illness. Education programs can help address this by providing knowledge and supporting the independent management of the condition. For this reason, two online education programs—one for affected CYP and one for their parents—were developed, implemented, and evaluated in terms of acceptance, format, and benefits.

A total of 24 CYP with ME/CFS, aged of up to 20 years, and their parents were recruited for this study. Of these 22 CYP with ME/CFS and 20 parents participated in the online education program. After development and conduct of the programs, six affected CYP were interviewed using written questions, which were answered via an audio device. Furthermore, six semi-structured interviews were obtained with parents. All parents also received an online questionnaire to evaluate the program. Data were analyzed using both quantitative and qualitative methods.

Both CYP and their parents expressed overall satisfaction with the program, highlighting aspects such as knowledge acquisition or reinforcement and, importantly, the opportunity to connect with other affected CYP or their parents. The online format was also perceived very positively.

The online education program met the expectations and needs of both affected CYP and parents regarding content and format. It facilitated exchange and provided practical knowledge. In this format, the online program appears to be a valuable component of care for those affected.

J.S., U.B., and B.V.: conceptualized and designed the study; U.B.: acquired funding and coordinated the BAYNET FOR MECFS project; J.S.: coordinated the education programs; J.E., M.S., J.S., N.S., N.R., V.D., L.S., J.T., K.D., and K.W.: conducted the pilot tests; F.K., N.S., and J.E.: conducted the qualitative analysis; F.K.: conducted the quantitative analysis and drafted the manuscript. All authors participated in developing the online education programs. All authors contributed to the subsequent revisions of the education programs. All authors have read, revised, and approved the final manuscript.

Received: 26 September 2025

Accepted: 16 December 2025

Accepted Manuscript online:
23 December 2025

Article published online:
06 January 2026

© 2026. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution License, permitting unrestricted use, distribution, and reproduction so long as the original work is properly cited. (https://creativecommons.org/licenses/by/4.0/)

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