Keicher, Franca, Thomann, Julia, Erlenwein, Jana et al. · Neuropediatrics · 2026 · DOI
This study created and tested two online education programs—one for children and young people with ME/CFS and one for their parents—to help them better understand the condition and manage it independently. Twenty-two young people and 20 parents used these programs and were asked about their experience. Both groups felt the programs were helpful, appreciated learning more about ME/CFS, and valued connecting with others going through similar experiences.
ME/CFS in children often goes unrecognized or misunderstood by families and healthcare providers, contributing to delayed diagnosis and inappropriate management. Online education programs accessible to geographically dispersed families could reduce isolation and support better self-management, making this evaluation relevant to improving quality of life and family coping strategies.
This study does not prove that the education program improves clinical outcomes, reduces symptoms, or changes actual disease management practices—only that participants found it acceptable and felt they gained knowledge. Without a control group, it cannot establish whether these programs are more effective than existing education methods. The study also does not demonstrate long-term retention of information or sustained behavioral changes.
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 →
The first block is for the primary paper and is the citation you should use in research work. The atlas-snapshot line only applies if you are specifically referring to this atlas’s reading of the paper on the date shown.
Primary citation
Keicher, Franca, Thomann, Julia, Erlenwein, Jana, Schottdorf, Mara, Wiejaczka, Karolina, Reiter, Nils Lennart, et al. (2026). Evaluation of an Online Patient Education Program for Children and Young People with ME/CFS and their Parents within the BAYNET FOR MECFS Study.. Neuropediatrics. https://doi.org/10.1055/a-2773-9655
BibTeX
@article{mecfsatlas-keicher-2026-evaluation-online,
author = {Keicher, Franca and Thomann, Julia and Erlenwein, Jana and Schottdorf, Mara and Wiejaczka, Karolina and Reiter, Nils Lennart and Scholz-Schwärzler, Nadine and Vogel, Barbara and Stojanov, Silvia and Augustin, Silvia and Saramandic, Milica and Jaeschke, Robert and Dettmer, Kristina and Englbrecht, Stephanie and Schanz, Linda and Dodel, Veronika and Zipper, Charlotte and Schieweck, Nicole and Ernst, Gundula and Behrends, Uta and Spiegler, Juliane},
title = {Evaluation of an Online Patient Education Program for Children and Young People with ME/CFS and their Parents within the BAYNET FOR MECFS Study.},
journal = {Neuropediatrics},
year = {2026},
doi = {10.1055/a-2773-9655},
note = {PubMed: 41435903},
url = {https://www.mecfsatlas.com/evidence/keicher-2026-evaluation-online},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/keicher-2026-evaluation-online
Contribute
Private, reviewed by a human. Not a public comment thread.