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New Zealand: Dysimmune Research - research organisation

Discussion in 'News from organisations' started by Hutan, Mar 21, 2023.

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  1. Hutan

    Hutan Moderator Staff Member

    Messages:
    29,059
    Location:
    Aotearoa New Zealand
    https://www.dysimmune.nz/
    Crowd-Funded Research into Long Covid, ME/CFS & Other Post-Viral Illnesses
    Hosted at the University of Auckland

    Immunologist Anna Brooks is the Principal Investigator. Other co-founders have lived experience of ME/CFS and Long Covid. With the people involved, I think we can feel confident that there won't be any BPS nonsense. The website content reads well.

    There's an exciting opportunity here to direct donor funds to something useful, and for collaborations with overseas investigations.

    They are currently recruiting for one study:
    Edit: Previously the organisation was called Post-Viral Research Aotearoa. the link to the website has been updated
     
    Last edited: Aug 9, 2024
    Hutan, Mar 21, 2023
    #1
    Ash, Mij, Wyva and 12 others like this.
  2. Ravn

    Ravn Senior Member (Voting Rights)

    Messages:
    2,169
    Location:
    Aotearoa New Zealand
    I signed up for this study. There were a few slightly ambiguously worded questions but not in any way in a psychosomatic red flag sort of way, just ordinary screening questions not tested sufficiently on outsiders to check for potential ambiguities. Just a minor nuisance issue and easily resolved by asking the very responsive team for clarification.

    As someone not living near a testing center I'm hoping they can get their planned home collection kits up and running. I think this is contingent on funding.

    That's my biggest worry re this research, that insufficient funding will force them to reduce the scope of the study - cohort size, number and type of tests run, etc - to such a degree that any findings will be weak. I hope that won't be the case but crowdfunding this sort of thing isn't easy

    I also made a small donation but if anyone reading this with much deeper pockets could reach into them, like reeeeal deep...
     
    Ravn, Mar 21, 2023
    #2
    ME/CFS Skeptic, shak8, AliceLily and 7 others like this.
  3. AliceLily

    AliceLily Senior Member (Voting Rights)

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    I've just emailed them and put my name forward.
     
    AliceLily, Mar 25, 2023
    #3
    Ravn, Mij, Peter Trewhitt and 4 others like this.
  4. ME/CFS Skeptic

    ME/CFS Skeptic Senior Member (Voting Rights)

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    3,977
    Location:
    Belgium
    Looks like a positive initiative.
     
    ME/CFS Skeptic, Mar 25, 2023
    #4
    Ravn, SNT Gatchaman, AliceLily and 3 others like this.
  5. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    5,657
    Location:
    Aotearoa New Zealand
    DysImmune Research announces Health Research Council health delivery activation grant.

    More at https://www.dysimmune.nz/health-research-council-grant-announcement/
     
    SNT Gatchaman, Oct 10, 2024
    #5
    Peter Trewhitt, Ravn, AliceLily and 1 other person like this.
  6. AliceLily

    AliceLily Senior Member (Voting Rights)

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    I didn't reply their email due to other health problems that surfaced.
     
    AliceLily, Oct 10, 2024
    #6
    Peter Trewhitt and Ravn like this.

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