Download PDF
Open Access
CC BY 4.0 · Neuropediatrics
DOI: 10.1055/a-2773-9655
Original Article

Evaluation of an online patient education program for children and young people with ME/CFS and their parents within the BAYNET FOR MECFS Study

Authors

  • Franca Keicher 

    1   Children and adolescent psychiatriy, University Hospital Wurzburg, Würzburg, Germany (Ringgold ID: RIN27207)

  • Julia Thomann

    2   Pediatrics, University Hospital Wurzburg, Würzburg, Germany (Ringgold ID: RIN27207)

  • Jana Erlenwein

    2   Pediatrics, University Hospital Wurzburg, Würzburg, Germany (Ringgold ID: RIN27207)

  • Mara Schottdorf

    2   Pediatrics, University Hospital Wurzburg, Würzburg, Germany (Ringgold ID: RIN27207)

  • Karolina Wiejaczka

    1   Children and adolescent psychiatriy, University Hospital Wurzburg, Würzburg, Germany (Ringgold ID: RIN27207)

  • Nils Lennart Reiter

    3   Alice-Salomon University of Applied Sciences Berlin, Berlin, Germany
    4   PhysioBib GbR, Berlin, Germany

  • Nadine Scholz-Schwärzler

    5   MRI Chronic Fatigue Center for Young People, Center for Pediatric and Adolescent Medicine, Technical University of Munich Hospital Rechts der Isar, Munchen, Germany (Ringgold ID: RIN27190)

  • Barbara Vogel

    6   Orthopedics and Sports Orthopedics, Technical University of Munich Hospital Rechts der Isar, Munchen, Germany (Ringgold ID: RIN27190)

  • Silvia Stojanov

    5   MRI Chronic Fatigue Center for Young People, Center for Pediatric and Adolescent Medicine, Technical University of Munich Hospital Rechts der Isar, Munchen, Germany (Ringgold ID: RIN27190)

  • Silvia Augustin

    5   MRI Chronic Fatigue Center for Young People, Center for Pediatric and Adolescent Medicine, Technical University of Munich Hospital Rechts der Isar, Munchen, Germany (Ringgold ID: RIN27190)

  • Milica Saramandic

    5   MRI Chronic Fatigue Center for Young People, Center for Pediatric and Adolescent Medicine, Technical University of Munich Hospital Rechts der Isar, Munchen, Germany (Ringgold ID: RIN27190)

  • Kristina Dettmer

    7   Parent Initiative for Children and Adolescents with ME/CFS Munich e.V, Munich, Germany

  • Stephanie Englbrecht

    8   German Association for ME/CFS, Hamburg, Germany

  • Robert Jaeschke

    9   Rehabilitation Centre for Children With Respiratory Diseases, Fachkliniken Wangen, Wangen, Germany

  • Linda Schanz

    2   Pediatrics, University Hospital Wurzburg, Würzburg, Germany (Ringgold ID: RIN27207)

  • Veronika Dodel

    10   Pediatrics, University Hospital Wurzburg, Wurzburg, Germany (Ringgold ID: RIN27207)

  • Charlotte Zipper

    10   Pediatrics, University Hospital Wurzburg, Wurzburg, Germany (Ringgold ID: RIN27207)

  • Nicole Schieweck

    10   Pediatrics, University Hospital Wurzburg, Wurzburg, Germany (Ringgold ID: RIN27207)

  • Gundula Ernst

    11   Department of Medical Psychology, Hannover Medical School, Hanover, Germany (Ringgold ID: RIN9177)

  • Uta Behrends

    5   MRI Chronic Fatigue Center for Young People, Center for Pediatric and Adolescent Medicine, Technical University of Munich Hospital Rechts der Isar, Munchen, Germany (Ringgold ID: RIN27190)

  • Juliane Spiegler

    10   Pediatrics, University Hospital Wurzburg, Wurzburg, Germany (Ringgold ID: RIN27207)

Supported by: Bavarian State Ministry of Science and Art
Further Information
Also available at
 PDF Download

Background: ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) 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. Methods: 24 CYP aged of up to 20 years with ME/CFS 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 conduction of the programs, six affected CYP were interviewed using written questions, which were answered via an audio device. Furthermore, 6 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. Results: 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. Discussion: 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.



Publication History

Received: 26 September 2025

Accepted after revision: 16 December 2025

Accepted Manuscript online:
23 December 2025

© . 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/).

Georg Thieme Verlag KG
Oswald-Hesse-Straße 50, 70469 Stuttgart, Germany