Johnson, Madeline, Torres, Chelsea, Watts-Rich, Halli et al. · Work (Reading, Mass.) · 2023 · DOI
This study asked adults with ME/CFS about whether they experienced symptoms during childhood. Researchers analyzed comments from patients on a popular blog forum and found that about 43% of adults reported having ME/CFS before age 18. The study identified common themes in patients' stories, including mental health struggles, family history of illness, feeling misunderstood by others, and difficulties at school.
Understanding how many people develop ME/CFS in childhood and what early symptoms look like is crucial for improving diagnosis and support for young patients. This study centers patient experiences and voices, providing valuable insights that can help clinicians, families, and researchers recognize ME/CFS earlier and better understand the patient journey.
This study does not prove that childhood symptoms directly cause adult ME/CFS or establish the biological mechanisms of disease onset. The blog-based sample may not represent all ME/CFS patients, and the findings are correlational rather than causal. Additionally, without medical record verification, we cannot confirm that all reported childhood symptoms were actually ME/CFS.
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
Johnson, Madeline, Torres, Chelsea, Watts-Rich, Halli, & Jason, Leonard (2023). Adults with ME/CFS report surprisingly high rates of youth symptoms: A qualitative analysis of patient blog commentary.. Work (Reading, Mass.). https://doi.org/10.3233/WOR-220484
BibTeX
@article{mecfsatlas-johnson-2023-adults-cfs,
author = {Johnson, Madeline and Torres, Chelsea and Watts-Rich, Halli and Jason, Leonard},
title = {Adults with ME/CFS report surprisingly high rates of youth symptoms: A qualitative analysis of patient blog commentary.},
journal = {Work (Reading, Mass.)},
year = {2023},
doi = {10.3233/WOR-220484},
note = {PubMed: 36911960},
url = {https://www.mecfsatlas.com/evidence/johnson-2023-adults-cfs},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/johnson-2023-adults-cfs
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