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

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Jul 27, 2021.

  1. Andy

    Andy Committee Member

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    "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)
     
    Last edited by a moderator: Dec 26, 2022
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  2. Andy

    Andy Committee Member

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    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.
     
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  3. NelliePledge

    NelliePledge Moderator Staff Member

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  4. RedFox

    RedFox Senior Member (Voting Rights)

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

    Hutan Moderator Staff Member

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    @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.
     
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  6. RedFox

    RedFox Senior Member (Voting Rights)

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    That's even better, thank you.
     
  7. RedFox

    RedFox Senior Member (Voting Rights)

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