Lacerda, Eliana M, McDermott, Clare, Kingdon, Caroline C et al. · Health expectations : an international journal of public participation in health care and health policy · 2019 · DOI
Researchers asked people with ME/CFS and MS about their experiences participating in a major study that collected blood samples and health information. Patients shared their hopes and frustrations about research, what they want scientists to study next, and how they'd like findings to be shared with them. The participants felt that research progress is like slowly putting together a puzzle, and they emphasized how important collaboration and persistence are.
This study directly incorporates ME/CFS patients' voices into research planning, addressing an often-overlooked aspect of medical research—how findings affect and are understood by those living with the disease. Understanding patient perspectives on research priorities and communication can help guide future studies toward questions that matter most to the ME/CFS community and improve how results are shared.
This qualitative study does not prove the efficacy of any particular treatments or establish biological mechanisms of ME/CFS. It reflects the experiences and preferences of participants in the UK Biobank and cannot be generalized to all people with ME/CFS worldwide. The study describes patient views rather than measuring clinical outcomes or validating specific research approaches.
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
Lacerda, Eliana M, McDermott, Clare, Kingdon, Caroline C, Butterworth, Jack, Cliff, Jacqueline M, & Nacul, Luis (2019). Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study.. Health expectations : an international journal of public participation in health care and health policy. https://doi.org/10.1111/hex.12857
BibTeX
@article{mecfsatlas-lacerda-2019-hope-disappointment,
author = {Lacerda, Eliana M and McDermott, Clare and Kingdon, Caroline C and Butterworth, Jack and Cliff, Jacqueline M and Nacul, Luis},
title = {Hope, disappointment and perseverance: Reflections of people with Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Multiple Sclerosis participating in biomedical research. A qualitative focus group study.},
journal = {Health expectations : an international journal of public participation in health care and health policy},
year = {2019},
doi = {10.1111/hex.12857},
note = {PubMed: 30632248},
url = {https://www.mecfsatlas.com/evidence/lacerda-2019-hope-disappointment},
}Atlas snapshot reference
ME/CFS Atlas. Generator v1 / Scanner v1.4 / policy v0.1. Accessed 2026-05-26. https://www.mecfsatlas.com/evidence/lacerda-2019-hope-disappointment
Contribute
Private, reviewed by a human. Not a public comment thread.