Exploring the feasibility of establishing a disease-specific post-mortem tissue bank in the UK: a case study in ME/CFS
- 1London School of Hygiene & Tropical Medicine, EPH/NPHIRU/CFS/ME Observatory, London, UK
- 2Buckinghamshire New University, Uxbridge; and CFS/ME Observatory, London, UK
- 3The ME Association, Gawcott, Buckinghamshire, UK
- 4Action for ME, Bristol, UK
- Correspondence to Dr Eliana M Lacerda, London School of Hygiene & Tropical Medicine, EPH/NPHIRU/ CFS/ME Observatory, Keppel Street, London EC1E 7HT, UK;
- Accepted 7 September 2010
- Published Online First 5 October 2010
Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a condition, the aetiology of which remains controversial, and there is still no consensus on its nature and determination. It has rarely been studied in post-mortem examinations, despite increasing evidence of abnormalities from neuroimaging studies.
Aim To ascertain the feasibility of developing a national post-mortem ME/CFS tissue bank in the UK, to enhance studies on aetiology and pathogenesis, including cell and tissue abnormalities associated with the condition.
Methods The case study was carried out combining qualitative methods, ie, key informant interviews, focus group discussions with people with ME/CFS, and a workshop with experts in ME/CFS or in tissue banking.
Results and conclusions The study results suggest that the establishment of the post-mortem ME/CFS tissue bank is both desirable and feasible, and would be acceptable to the possible tissue donors, provided that some issues were explicitly addressed.
Funding Action for ME.
Competing interests PS is the Chief Executive of Action for ME, which is funding the research.
Ethics approval This study was conducted with the approval of the ethics committee of the London School of Hygiene & Tropical Medicine.
Provenance and peer review Not commissioned; externally peer reviewed.