Open ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation

[Andy]

"The ME Association is the only M.E. charity involved in the collection of post mortem tissue samples from people diagnosed with the disease in the UK.

Our long-term aim is to establish a national ME/CFS Post Mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research.

....

Current situation

Plans to set up a formal ‘bricks and mortar’ post mortem facility are currently on hold. This is due to the enormous cost such a project would incur and the continuing cost of launching and maintaining the UK ME/CFS Biobank.

In the meantime, we are continuing to work with a consultant neuropathologist at Addenbrooke’s Hospital in Cambridge in arranging post mortems on an individual basis when we are notified that someone has died and the person has made it clear that they want to donate their body to ME/CFS research"

https://meassociation.org.uk/research/research-projects/post-mortem-tissue-bank/

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
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
Post mortem tissue donation and autopsies (Members only)

 

[Andy]

I was reminded of this today, and as I couldn't find a thread for it, here is a thread for it. We do though have this pre-existing Members-only discussion thread on the general subject, Post mortem tissue donation and autopsies.

 

[NelliePledge]

19 October 2023

ME Association announces post mortem research partnership with Manchester brain bank

https://meassociation.org.uk/2023/1...earch-partnership-with-manchester-brain-bank/

 

[RedFox]

Do they accept donations from the US? I would like to put this in my advance directive in case I die unexpectedly.

 

[Hutan]

@RedFox
Check out this thread:
Post mortem tissue donation and autopsies (Members only)

There's a post there about the US NIH NeuroBioBank. People can sign up to make a directive for tissue donation. It was mentioned on a NIH ME/CFS call.

 

[RedFox]

@RedFox
Check out this thread:
Post mortem tissue donation and autopsies (Members only)

There's a post there about the US NIH NeuroBioBank. People can sign up to make a directive for tissue donation. It was mentioned on a NIH ME/CFS call.

That's even better, thank you.

 

[RedFox]

Long-term follow-up: I put the following in my advance directive:

After I die, I would like to donate parts of my body, especially my brain, for research into conditions I had during my life, including ME/CFS and autism if still applicable. I would like to give my brain to the Brain Donor project, NIH NeuroBank, or a similar organization.