We are regularly asked about progress on plans to set up a UK tissue and post-mortem tissue bank. This is where tissue samples can be collected, stored and made available for research.
The current situation is as follows:
This work has been running in parallel with the ME Biobank, which is collecting and storing blood samples for research. Work there is now well under way.
The steering group behind the tissue and post-mortem bank has investigated the complex issues involved and published a report in The Journal of Clinical Pathology (www.meassociation.org.uk/?p=2263.
But the plan to set up the formal ‘bricks and mortar’ facility has been put on hold – mainly due to the huge costs involved.
In the meantime, our medical adviser Dr Charles Shepherd is working with a consultant neuropathologist at Addenbrooke’s Hospital in Cambridge in arranging post mortems 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.
The MEA does not at present hold a database of people who want to donate body tissues. In its absence, anyone who wants to donate post post mortem tissues for ME research needs to make this clear in writing in a Statement of Intent which can be kept with their Will, or in a Codicil to their Will. Next-of-kin will need to know where these are kept.
Download the Statement of Intent HERE
We need to told quickly after a death has occurred, and preferably within 24 hours. This is because speedy access will be required to specific tissues and the consent of relatives, coroners and pathologists will be needed at a sensitive time.
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