Weaver, Stephanie Sargent, Carry, Monique, Bertolli, Jeanne et al. · Frontiers in health services · 2025 · DOI
This study looked at whether having patients with lived experience of Long COVID and ME/CFS help teach doctors made a real difference in patient care. Researchers tracked what these patient-experts recommended to doctors through online training sessions from 2022-2024, and then asked actual patients if their doctors seemed to apply that advice. The main recommendations focused on validating patients' experiences, showing empathy, helping with referrals, and supporting self-care. Patients reported noticing positive changes in how their doctors treated them, suggesting that including patient-experts in medical education actually works.
This study demonstrates that including people with lived experience of ME/CFS in medical education can change how doctors interact with and care for their patients. For ME/CFS patients and advocates, it provides evidence supporting patient-centered approaches to provider training and validates the value of patient expertise in improving healthcare quality. The findings support scaling similar programs to address the well-documented gaps in ME/CFS recognition and appropriate care.
This study does not prove that the LC&FIRP program improves clinical outcomes or recovery rates—it only shows that patients perceived positive changes in provider behavior and attitudes. The observational, qualitative design cannot establish causation or compare outcomes to standard care. The study also does not measure whether improved provider attitudes translate to better long-term health outcomes for patients.
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
Weaver, Stephanie Sargent, Carry, Monique, Bertolli, Jeanne, Godino, Job, Struminger, Bruce, Taren, Douglas, et al. (2025). Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study.. Frontiers in health services. https://doi.org/10.3389/frhs.2025.1562651
BibTeX
@article{mecfsatlas-weaver-2025-assessing-influence,
author = {Weaver, Stephanie Sargent and Carry, Monique and Bertolli, Jeanne and Godino, Job and Struminger, Bruce and Taren, Douglas and Scott, John D and Sharp, Sydney P and Samaniego, Jane and Bean, Donna R and Issa, Anindita and Lin, Jin-Mann S and Unger, Elizabeth R and Ramers, Christian B},
title = {Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study.},
journal = {Frontiers in health services},
year = {2025},
doi = {10.3389/frhs.2025.1562651},
note = {PubMed: 40656206},
url = {https://www.mecfsatlas.com/evidence/weaver-2025-assessing-influence},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/weaver-2025-assessing-influence
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