Exploring the feasibility of establishing a disease-specific post-mortem tissue bank in the UK: a case study in ME/CFS.
Lacerda, Eliana M, Nacul, Luis, Pheby, Derek et al. · Journal of clinical pathology · 2010 · DOI
Quick Summary
This study explored whether it would be possible and acceptable to create a tissue bank in the UK specifically for ME/CFS—a place where donated tissues from people with ME/CFS could be studied after death to better understand the disease. Researchers interviewed patients, held discussion groups, and consulted experts to find out what people thought about this idea. The findings show that both patients and experts believe such a tissue bank would be valuable and could work in practice, as long as certain concerns were properly addressed.
Why It Matters
Post-mortem tissue examination could reveal cellular and tissue-level abnormalities that cannot be detected during life, potentially unlocking new insights into ME/CFS's underlying biological mechanisms. This study demonstrates that both patients and the ME/CFS research community support this approach, providing a roadmap for establishing infrastructure that could accelerate discovery and understanding of the disease.
Observed Findings
Patients with ME/CFS expressed willingness to donate tissues for post-mortem research, provided their concerns were addressed
Experts in both ME/CFS and tissue banking confirmed technical and practical feasibility of establishing a disease-specific tissue bank
Stakeholders identified specific issues requiring explicit attention before implementation (governance, consent protocols, tissue handling)
Significant gap exists between neuroimaging evidence of abnormalities and limited post-mortem pathological investigation in ME/CFS
Inferred Conclusions
A national post-mortem ME/CFS tissue bank is both scientifically desirable and logistically feasible to establish in the UK
Addressing stakeholder concerns about consent, governance, and ethical oversight is essential for donor acceptance and successful implementation
Such a resource could substantially advance understanding of ME/CFS etiology and pathogenesis through direct tissue examination
Remaining Questions
What specific governance structures and consent procedures would best address stakeholder concerns identified in this study?
Would sufficient numbers of people with ME/CFS consent to tissue donation to make such a bank statistically useful for research?
What This Study Does Not Prove
This study does not provide any tissue samples, pathological findings, or biological data about ME/CFS itself—it only assesses whether such a resource could realistically be created. The study does not prove that a tissue bank would definitively identify the cause of ME/CFS, only that it is feasible and desirable as a tool for future research.