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Considerations in establishing a post-mortem brain and tissue bank for the study of ME/CFS: a proposed protocol, 2014, Nacul et al

Discussion in 'ME/CFS research' started by Hutan, Dec 6, 2022.

  1. Hutan

    Hutan Moderator Staff Member

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    Location:
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    https://bmcresnotes.biomedcentral.com/articles/10.1186/1756-0500-7-370
    Open access


    Luis Nacul,
    Dominic G O’Donovan,
    Eliana M Lacerda,
    Djordje Gveric,
    Kirstin Goldring,
    Alison Hall,
    Erinna Bowman &
    Derek Pheby

    Abstract
    Background
    Our aim, having previously investigated through a qualitative study involving extensive discussions with experts and patients the issues involved in establishing and maintaining a disease specific brain and tissue bank for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), was to develop a protocol for a UK ME/CFS repository of high quality human tissue from well characterised subjects with ME/CFS and controls suitable for a broad range of research applications. This would involve a specific donor program coupled with rapid tissue collection and processing, supplemented by comprehensive prospectively collected clinical, laboratory and self-assessment data from cases and controls.

    Findings
    We reviewed the operations of existing tissue banks from published literature and from their internal protocols and standard operating procedures (SOPs). On this basis, we developed the protocol presented here, which was designed to meet high technical and ethical standards and legal requirements and was based on recommendations of the MRC UK Brain Banks Network. The facility would be most efficient and cost-effective if incorporated into an existing tissue bank. Tissue collection would be rapid and follow robust protocols to ensure preservation sufficient for a wide range of research uses. A central tissue bank would have resources both for wide-scale donor recruitment and rapid response to donor death for prompt harvesting and processing of tissue.

    Conclusion
    An ME/CFS brain and tissue bank could be established using this protocol. Success would depend on careful consideration of logistic, technical, legal and ethical issues, continuous consultation with patients and the donor population, and a sustainable model of funding ideally involving research councils, health services, and patient charities. This initiative could revolutionise the understanding of this still poorly-understood disease and enhance development of diagnostic biomarkers and treatments.

    Other threads on tissue donation
    UK brain banks that accept ME/CFS donors
    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)
     
    Last edited by a moderator: Dec 26, 2022
    sebaaa, MSEsperanza, Lilas and 6 others like this.
  2. Hutan

    Hutan Moderator Staff Member

    Messages:
    26,534
    Location:
    Aotearoa New Zealand
     
  3. RedFox

    RedFox Senior Member (Voting Rights)

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    I'm disappointed nobody has put this into action. I would absolutely want samples of my tissue used for ME research if I die when ME is still poorly understood.
     
    sebaaa, alktipping, Hutan and 7 others like this.
  4. Shadrach Loom

    Shadrach Loom Senior Member (Voting Rights)

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    For all the good it’s currently doing, they can have the tissue they want from me right now.

    Anyway, excellent idea. Is this something that Addenbrokes wants to do, and is funded for?
     
    alktipping, Hutan, DokaGirl and 4 others like this.
  5. josepdelafuente

    josepdelafuente Senior Member (Voting Rights)

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    Hahaha yep that's how I feel
     
    alktipping, Hutan, bobbler and 2 others like this.
  6. Braganca

    Braganca Senior Member (Voting Rights)

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    I’ve sent a message to find out what happened and why it didn’t proceed. @Tom Kindlon suggested it was a lack of funding. I wonder if we could try again to get this funded.
     
  7. Kitty

    Kitty Senior Member (Voting Rights)

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    There are some existing brain banks in the UK. Given that the numbers of donors would be limited (many potential volunteers will live a normal or near-normal lifespan with their ME), might it make sense to share resources with another?
     
  8. CRG

    CRG Senior Member (Voting Rights)

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    The ME Biobank - live blood only: https://meassociation.org.uk/research/research-projects/uk-mecfs-biobank/

    Dealing with cadavers is legal and cost intensive, and needs prior engagement with the deceased's relatives and/or persons with power of attorney, these are not small hurdles to overcome. There is though a bigger problem: Who are the PwME that are dying ?

    (broken record - epidemiology !!!) but if one doesn't know the character of a patient population and not have a clear picture of the pattern of disease progress over a lifetime it is not possible to make informed sampling of donated cadavers or cadaver tissue. If a patient population is, despite its disease status, relatively long lived then even where there is a high rate of donation there are inevitable confounders of multiple comorbidities and senescence which may not be easily addressed even where there is adequate control matching.

    For cadaver sampling the ideal patient population is one with a high percentage of young males who ride motorcycles and engage in extreme sports - the combination of exposure to danger and risky behaviour provides a ready supply of cadavers which have few health confounds; compare that to the average 80 year old who (in the UK) will have a decades long history of being overweight and sedentary behaviour, having high blood pressure, a 50/50 chance of at least one cancer episode, and an 18% of having dementia.

    The issue of confound isn't simply to identify a difference between ME/CFS cadavers and non ME/CFS cadavers, but the whole question of what the difference means at different ages at death - finding the presence of an endemic pathogen in the body of an 80 year old with ME/CFS may mean something wholly different from finding it in an 18 year old.
     
    Last edited: Dec 6, 2022
    sebaaa, alktipping, Hutan and 5 others like this.
  9. CRG

    CRG Senior Member (Voting Rights)

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    Coroner and/or Medical autopsy/postmortem are different from research, they are mostly organ specific and are looking for known pathologies which are likely to have caused a specific death. People with ME/CFS may die from anything that would cause death in any other person and without far greater understanding of the pathology of ME/CFS it would be very difficult to work backwards from a death to understand the role that ME/CFS may play.

    There has been at least one coroner verdict in the UK that attributed death to ME/CFS but there was no specified pathology that explained what underlying disease process of ME/CFS led to the death, so the verdict was bit circular from a pathology perspective. And it's important to acknowledge that not every death is easily explicable, death is rarely a simple process and multiple organs may be involved and autopsies are mostly about finding a headline cause.

    I can't see the NHS putting resources into investigating the deaths of PwME without far greater evidence of direct and singular lethality. The limited data that there is on ME/CFS points to heterogenaity between patients and multiple mis/dys-functions in individuals without any single suspect showing up.
     
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