Childs, Nicola, Robinson, Lisa, Chowdhury, Sonya et al. · Research involvement and engagement · 2015 · DOI
Researchers asked over 1,100 people affected by ME/CFS what they thought should be the most important areas for future research. The top priorities were understanding what causes ME/CFS, developing better treatments, and improving how quickly and accurately doctors can diagnose the illness. This study shows that patients have strong, clear opinions about what research funding should focus on.
This study directly incorporates patient voices into research funding decisions—a critical gap since ME/CFS patients have historically been excluded from priority-setting. Understanding patient-identified priorities helps align research investment with the needs of those most affected and can increase the relevance and impact of funded research.
This survey does not prove that the identified priorities are scientifically the most feasible, cost-effective, or likely to yield breakthroughs. It reflects the opinions of Action for M.E. members specifically and may not represent the views of all ME/CFS patients globally. The study cannot determine why certain priorities (like psychological aspects) ranked lower or whether this reflects patient preference versus prior stigmatization.
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
Childs, Nicola, Robinson, Lisa, Chowdhury, Sonya, Ogden, Clare, & Newton, Julia L (2015). Consulting patients in setting priorities in Myalgic Encephalomyelitis (M.E.) research: findings from a national on-line survey.. Research involvement and engagement. https://doi.org/10.1186/s40900-015-0011-x
BibTeX
@article{mecfsatlas-childs-2015-consulting-patients,
author = {Childs, Nicola and Robinson, Lisa and Chowdhury, Sonya and Ogden, Clare and Newton, Julia L},
title = {Consulting patients in setting priorities in Myalgic Encephalomyelitis (M.E.) research: findings from a national on-line survey.},
journal = {Research involvement and engagement},
year = {2015},
doi = {10.1186/s40900-015-0011-x},
note = {PubMed: 29062500},
url = {https://www.mecfsatlas.com/evidence/childs-2015-consulting-patients},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-26. https://www.mecfsatlas.com/evidence/childs-2015-consulting-patients
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