O'Dell, John A, Walker, Ash, Latham, Andrew J et al. · Journal of patient experience · 2025 · DOI
This study followed 672 adults with dysautonomia (a condition where the nervous system that controls automatic body functions doesn't work properly) to understand how long it takes to get diagnosed and which doctors help with diagnosis. On average, it took 7.7 years for people to receive a diagnosis, and they often saw multiple types of doctors before getting answers. The study found that dysautonomia commonly occurs alongside other conditions like Ehlers-Danlos syndrome, mast cell disorders, and ME/CFS, which can make diagnosis even more confusing.
For ME/CFS patients, this study is relevant because dysautonomia frequently co-occurs with ME/CFS and the two conditions often create diagnostic confusion that delays treatment. Understanding the common obstacles in diagnosing dysautonomia—including symptom overlap with ME/CFS and other conditions—can help both patients and clinicians recognize the need for interdisciplinary evaluation and reduce the years of suffering before accurate diagnosis.
This study does not establish what causes the diagnostic delay or prove that delayed diagnosis directly worsens outcomes—only that they are associated. The cross-sectional design and reliance on patient recall cannot determine the causal mechanisms behind the 7.7-year average delay or whether earlier diagnosis would have definitively improved health outcomes. The study does not establish prevalence rates or compare diagnostic journeys across different healthcare systems.
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
O'Dell, John A, Walker, Ash, Latham, Andrew J, Parisian, Daniel J, Branch, Lindsay E, Vanderburg, Dreena D, et al. (2025). The Diagnostic Journey of Dysautonomia Patients: Insights from a Patient-Reported Outcome Study.. Journal of patient experience. https://doi.org/10.1177/23743735251314651
BibTeX
@article{mecfsatlas-odell-2025-diagnostic-journey,
author = {O'Dell, John A and Walker, Ash and Latham, Andrew J and Parisian, Daniel J and Branch, Lindsay E and Vanderburg, Dreena D and Cox, Ava A and Chavis, Shelley and Smith, Silvia E},
title = {The Diagnostic Journey of Dysautonomia Patients: Insights from a Patient-Reported Outcome Study.},
journal = {Journal of patient experience},
year = {2025},
doi = {10.1177/23743735251314651},
note = {PubMed: 39839488},
url = {https://www.mecfsatlas.com/evidence/odell-2025-diagnostic-journey},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-30. https://www.mecfsatlas.com/evidence/odell-2025-diagnostic-journey
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