Dr. Naomi Harvey shared the responses from brain banks which accept ME patients in the UK. London, Kings College Brain Bank: “In general, our brain bank would be able to accept donations from patients with ME/CFS and there is a research interest locally. However, we have suffered severely with funding cuts recently so do need to look at each donation on a case-by-case basis - there are some donations that we are no longer able to accept due to distance from us, timings (including coroner involvement) & some clinical exclusions. We’d encourage anyone with an interest to contact us directly & we can discuss further. Newcastle Brain Bank: “In principle I think we would be prepared to accept donations from those with ME/ CFS should they be offered…we are now looking at the feasibility of collecting tissue from those with other neurological disorders & ME could certainly be considered for inclusion in this…geographical factors are quite important in brain donation due to the practicalities of collecting the tissue quickly after the donor has died & so we would not really be able to offer this to potential donors living in other parts of the UK. We bank the tissue and researchers apply to us for whatever they need to further their studies. I don’t think we have ever received any enquiries about tissue from those with ME/CFS before but that does not mean of course that it is not in demand MS and Parkinson’s Brain Bank at Imperial in London: “We do accept donations from patients with ME/CFS as a part of our MS cohort. So far we did not get any donors with ME/CFS.” Original thread: https://twitter.com/user/status/1603790805138817025 Other threads on tissue donation 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 Open ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation Post mortem tissue donation and autopsies (Members only)
It would be interesting to know what sort of a financial donation would need to be made at the same time as a brain donation in order to cover costs. I imagine there would be quite a few people willing to leave a few thousand dollars/pounds to a brain bank out of their estate when they die to partly cover costs of getting the brain into the brain bank, and perhaps to contribute to ongoing costs. If brain banks had some set wording that could be included in people's wills, I imagine there could be quite a lot of people taking up the option.
considering the organ retention scandal here in the U K .I would not trust any organ bank they have had various human tissues stored for decades most are just left to rot as if medical science has had zero interest in discovering the vast amount of knowledge that is still hidden about the human body .I think the complexity of the unsolved health problems just rubs their ego's the wrong way . In a fully broken system the very few who would spend decades on solving one complex problem would not receive the same rewards as some one who throws out some of the worst copy paste type papers that are rightfully criticised here .
Very honestly, Kings College would be the last place I'd trust to donate my brain. That is where the worst of the psych lobby still works.
For the people who are doubting Kings or generally — Would brain banks not just be repository’s to which outside researchers could apply to access and use the samples, people like Bupesh Prusty? As long as they properly store the organs, isn’t that the main goal? (I’m not familiar w the organ retention scandal, not in UK myself)
