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17 Nov 2017 | UK Biobank now recruiting ME/CFS patients to give blood samples

Discussion in 'BioMedical ME/CFS News' started by Sasha, Nov 17, 2017.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    and:

    Code:
    https://twitter.com/mecfsbiobank/status/931096173179539458


    What I don't know is whether PWME outside London can participate.

    Do you know, @Jonathan Edwards?
     
    Sasha, Nov 17, 2017
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    Dolphin, Binkie4, Valentijn and 5 others like this.
  2. Andy

    Andy Committee Member (& Outreach when energy allows)

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    I've emailed them.
     
    Andy, Nov 17, 2017
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  3. Cheshire

    Cheshire Moderator Staff Member

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    Cheshire, Nov 17, 2017
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  4. Andy

    Andy Committee Member (& Outreach when energy allows)

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    To quote myself, the reply I've received is
     
    Andy, Nov 17, 2017
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    It's M.E. Linda, Liv aka Mrs Sowester, Dolphin and 5 others like this.
  5. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    @Andy
    Is there an email address for the biobank?
     
    Binkie4, Nov 17, 2017
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  6. Andy

    Andy Committee Member (& Outreach when energy allows)

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    mecfsbiobank@lshtm.ac.uk but also in Sasha's original post ('behind' the blue text "contact us").
     
    Andy, Nov 17, 2017
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  7. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thanks Andy. Have contacted them.
     
    Binkie4, Nov 17, 2017
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  8. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Had a very prompt reply from the research nurse at the biobank requesting information giving criteria I can't comply with.
    1) need to be younger than 58 (18-58)
    2) must not be on steroids or antivirals ( affecting immune system)
    3) address must be given. I might fit there since I am in London
    4) must not have cancer or heart disease or major psych illness
    5) am I housebound?

    There was also a note that made clear that everyone fitting the criteria may not be suitable.
    @Andy
     
    Binkie4, Nov 21, 2017
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    It's M.E. Linda, MEMarge, Cheshire and 4 others like this.
  9. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Confirmation received this morning from the research nurse that I am not suitable to provide samples for biobank. It was as I expected.

    I had also asked whether samples could be collected at home because that hadn't been fully stated. They can, funded by the NIH grant.

    This is great because, assuming they get plenty of offers of samples, they will be able to select across the severity range, assuming that this is what they want to study.
     
    Binkie4, Nov 21, 2017
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    It's M.E. Linda, Sly Saint, MEMarge and 1 other person like this.
  10. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Binkie4, Nov 21, 2017
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    It's M.E. Linda, Sly Saint, MEMarge and 1 other person like this.

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