Exploring the feasibility of establishing a disease-specific post-mortem tissue bank in the UK: a case study in ME/CFS, 2010, Lacerda et al

[Hutan]

An old thread, but the idea of a post-mortem biobank is often discussed on the forum, and this study was linked in one such discussion.

https://jcp.bmj.com/content/63/11/1032
Not open-access
Sci-hub link: https://sci-hub.wf/10.1136/jcp.2010.082032

Abstract
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.

Other threads on tissue donation
UK brain banks that accept ME/CFS donors
Considerations in establishing a post-mortem brain and tissue bank for the study of ME/CFS: a proposed protocol, 2014, Nacul et al
Open ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation
Post mortem tissue donation and autopsies (Members only)

 

[Hutan]

It's brief paper.
Some interesting bits:

In the 1990s, US Centers for Disease Control (CDC) reviews recommended the establishment of a CFS patient brain bank,8 although no action has yet resulted.

The ‘expert’ patient focus group emphasised that PWME and carers increasingly demand biomedical research into ME/CFS, and enthused about a PM tissue bank. The ‘lay’ patients, despite initial reluctance, concurred.
the ‘lay ’ patients saw family reactions and cultural and religious issues as major factors affecting donor enrolment.

The patient groups did not expect health professionals to favour the proposal. Indeed, the two physician interviewees, although disagreeing, favoured ‘in vivo’ research and did not consider PM studies useful adjuncts to this.

The panel of experts concluded that a PM ME/CFS tissue bank is both desirable and feasible. According to them, it would benefit researchers pursuing hypotheses related to structural abnormalities and pathophysi- ological mechanisms. They proposed that it should use existing infrastructure facilities, in order to optimise use of resources and sustainability, and attached priority to involvement of patient organisations.

“.because as I said, to these doctors [psychiatrists] I wouldn’t even want to give a copy of my medical records let alone my tissue, . I am very happy to give tissue to the tissue bank, I think it’s a wonderful idea, brilliant! Wonderful! But I have a proviso that there are types of research that I don’t want my tissues to be used for.”

A patient organisation, Action for ME, funded the study, in line with its vision of achieving a better future for people with ME by ‘ . acting as a catalyst for the development of research into the treatment and causes of ME, promoting, monitoring, analysing and disseminating research into all aspects of the illness’. It wishes to support objective research into underlying disease mechanisms, uninfluenced by prior beliefs and without bias.12