de Carvalho Leite, Jose C, de L Drachler, Maria, Killett, Anne et al. · International journal for equity in health · 2011 · DOI
This study asked 35 people with ME/CFS in England about what support they needed from health and social care services. Participants described needing personalized help with managing symptoms, practical support for daily life, and financial assistance—but found it difficult to access these services because doctors and providers often didn't understand their condition. The researchers found that some groups, including certain ethnic minorities, faced even greater barriers to getting the help they needed.
This study directly addresses a critical gap: understanding what people with ME/CFS actually need from healthcare and social systems. By centering patient voices on equity and access barriers, it provides evidence that can drive systemic improvements in how services are organized and delivered, particularly for marginalized groups within the ME/CFS population.
This qualitative study does not establish causation or quantify how widespread these barriers are across all ME/CFS populations globally. It reflects experiences in England and may not fully represent other healthcare systems. The findings describe expressed needs rather than proving which interventions would most effectively meet them.
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
de Carvalho Leite, Jose C, de L Drachler, Maria, Killett, Anne, Kale, Swati, Nacul, Luis, McArthur, Maggie, et al. (2011). Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis.. International journal for equity in health. https://doi.org/10.1186/1475-9276-10-46
BibTeX
@article{mecfsatlas-de-carvalho-leite-2011-social-support,
author = {de Carvalho Leite, Jose C and de L Drachler, Maria and Killett, Anne and Kale, Swati and Nacul, Luis and McArthur, Maggie and Hong, Chia Swee and O'Driscoll, Lucy and Pheby, Derek and Campion, Peter and Lacerda, Eliana and Poland, Fiona},
title = {Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis.},
journal = {International journal for equity in health},
year = {2011},
doi = {10.1186/1475-9276-10-46},
note = {PubMed: 22044797},
url = {https://www.mecfsatlas.com/evidence/de-carvalho-leite-2011-social-support},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-28. https://www.mecfsatlas.com/evidence/de-carvalho-leite-2011-social-support
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