Ramiller, Allison, Mudie, Kathleen, Seibert, Elle et al. · JMIR research protocols · 2022 · DOI
Researchers created a registry called 'You + ME' to collect health information from thousands of people with ME/CFS, long COVID, and healthy volunteers over time. By gathering this large amount of data in one place, researchers hope to better understand why people get sick differently and develop new treatments. As of September 2021, over 4,200 people had joined, with most participants finding the registry helpful and likely to recommend it to others.
ME/CFS lacks validated diagnostics and treatments partly because the disease is heterogeneous—meaning it manifests differently across patients. By collecting standardized data from thousands of participants, the You + ME Registry creates a resource that could help identify disease subtypes, discover biomarkers, and accelerate development of personalized treatments, similar to how big data approaches have advanced cancer and MS research.
This protocol paper describes the registry's design and enrollment metrics but does not present clinical findings, biomarkers, disease subtypes, or evidence that any particular treatment is effective. The high enrollment and satisfaction rates do not prove that the data collected will reveal new causes of ME/CFS or lead to new therapies—only that the infrastructure is functioning and ready for analysis.
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
Ramiller, Allison, Mudie, Kathleen, Seibert, Elle, & Whittaker, Sadie (2022). The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Related Diseases: Protocol for the You + ME Registry Research Platform.. JMIR research protocols. https://doi.org/10.2196/36798
BibTeX
@article{mecfsatlas-ramiller-2022-facilitation-clinical,
author = {Ramiller, Allison and Mudie, Kathleen and Seibert, Elle and Whittaker, Sadie},
title = {The Facilitation of Clinical and Therapeutic Discoveries in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Related Diseases: Protocol for the You + ME Registry Research Platform.},
journal = {JMIR research protocols},
year = {2022},
doi = {10.2196/36798},
note = {PubMed: 35816681},
url = {https://www.mecfsatlas.com/evidence/ramiller-2022-facilitation-clinical},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-29. https://www.mecfsatlas.com/evidence/ramiller-2022-facilitation-clinical
Contribute
Private, reviewed by a human. Not a public comment thread.