I’ve recently managed to email the UK Brain Banks to see if any will accept tissue donations for #MEcfs research. Unlikely any will, but I’ll update you all when I hear back 🤞🏻
Cambridge said they don’t as they focus on neuro degenerative diseases but that they’d raise it at their next management meeting.
Answer from Sheffield: “We are not funded to collect such cases, I am afraid. However, the Neurodegenerative Diseases Brain Bank in King's College in London, have an interest in COVID-related neuropathology, so may be able to accept long covid cases”
Answer from Edinburgh:
“Thank you for your email but I’m afraid the Edinburgh Brain Bank does not accept donations from people with ME/CFS.”
Short and sweet 😕
Answer from London, Kings College Brain Bank is positive!
“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: positive!
“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”
So, if you have #MEcfs or #LongCovid and live in the Newcastle area and you want to sign up to donate brain and spinal tissue after your death, you can get in touch here nbtr.ncl.ac.uk
MS and Parkinson’s Brain Bank at Imperial in London: positive!
“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.”
So if you have #MEcfs and #MS and want to donate your tissue after death, get in touch.
Reply from Manchester Brain Bank: semi positive
“Whilst, in principle, we are more than happy to support these types of donation, there is a cost implication. The cost per brain donation for retrieval, storage and research access for five years is almost £10,000…
see brainbanknetwork.ac.uk/public/aboutuk…). Without funding from an established ME/CFS charity or other supporting body, we would not be able to bear the full costs of collecting brain donations from individuals with ME/CFS.”
They asked if I know of any charities they can approach to discuss.
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