ME Association: The debate about an ME/CFS post-mortem and tissue bank rumbles on...

[Firestormm]

The debate about an ME/CFS post-mortem and tissue bank rumbles on...

From BMC Research Notes, 18 June 2014. Download of full paper available HERE.

18 June 2014

Considerations in establishing a post-mortem brain and tissue bank for the study of myalgic encephalomyelitis/chronic fatigue syndrome: a proposed protocol

Luis Nacul (1*), Dominic G O’Donovan (2), Eliana M Lacerda (1), Djordje Gveric(3), Kirstin Goldring(4), Alison Hall(5), Erinna Bowman (1), Derek Pheby(6).

Abstract (provisional)

BACKGROUND

Our aim, having previously investigated through a qualitative study involving extensive discussions with experts and patients the issues involved in establishing and maintaining a disease specific brain and tissue bank for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), was to develop a protocol for a UK ME/CFS repository of high quality human tissue from well characterised subjects with ME/CFS and controls suitable for a broad range of research applications.

This would involve a specific donor program coupled with rapid tissue collection and processing, supplemented by comprehensive prospectively collected clinical, laboratory and self-assessment data from cases and controls.

FINDINGS

We reviewed the operations of existing tissue banks from published literature and from their internal protocols and standard operating procedures (SOPs). On this basis, we developed the protocol presented here, which was designed to meet high technical and ethical standards and legal requirements and was based on recommendations of the MRC UK Brain Banks Network and the Brain Net Europe II network.

The facility would be most efficient and cost-effective if incorporated into an existing tissue bank. Tissue collection would be rapid and follow robust protocols to ensure preservation sufficient for a wide range of research uses. A central tissue bank would have resources both for wide-scale donor recruitment and rapid response to donor death for prompt harvesting and processing of tissue.

CONCLUSION

An ME/CFS brain and tissue bank could be established using this protocol. Success would depend on careful consideration of logistic, technical, legal and ethical issues, continuous consultation with patients and the donor population, and a sustainable model of funding ideally involving research councils, health services, and patient charities.

This initiative could revolutionise the understanding of this still poorly-understood disease and enhance development of diagnostic biomarkers and treatments.

An earlier report on this subject by Lacerda, Nacul, Pheby, Shepherd and Spencer appeared in the Journal of Clinical Pathology in November 2010. The abstract is available HERE

 

[Firestormm]

So let's get on with it then! I would have donated money to this project I think more than any other over the years. High time it got off the ground. Everything takes so darn long...