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. — ME/CFS Atlas
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.
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
Quick Summary
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.
Why It Matters
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.
Observed Findings
Participants described research progress as 'putting together a jigsaw' requiring perseverance and collaboration
Patients emphasized the importance of validation and acceptance in their research participation
Diagnostic uncertainty and stigma were significant emotional concerns for participants
Participants had specific ideas about which research topics should be prioritized
Clear, accessible dissemination of findings was identified as important to patient engagement
Inferred Conclusions
Biomedical research directions in ME/CFS should be informed by patient priorities and lived experiences
A more collaborative research culture involving patients from inception may improve research relevance and outcomes
Addressing stigma and validation in research communication is as important as scientific findings themselves
Patient involvement in biobanks strengthens research by ensuring studies address questions that matter to affected communities
Remaining Questions
How do patient research priorities identified here compare with current funding allocations in ME/CFS research?
What This Study Does Not Prove
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 →
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