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Video: Q&A with members of the CureME / UK ME/CFS Biobank team June 2019 Pts 1 & 2

Discussion in 'Researcher Interactions' started by Andy, Jun 14, 2019 at 2:52 PM.

  1. Andy

    Andy Committee Member & Outreach

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    The Science for ME forum are delighted that Andy, who works on outreach for us, was able to speak with members of the CureME / UK ME/CFS Biobank team.

    The conversation has been split into two halves, part one talks about their research, while part two discusses their biobanking work.

    Link to part two: [TBA, we are currently working on this, due next week.]

    To find out more about CureME, visit https://cureme.lshtm.ac.uk/

    To read about their publications, visit https://cureme.lshtm.ac.uk/our-studies/

    And to donate to support their work, visit https://cureme.lshtm.ac.uk/donate-to-cureme/

    Many thanks to Caroline, Eliana, Jack and Kate for their valuable time.
     
  2. Andy

    Andy Committee Member & Outreach

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    Reserved for part two.
     
    adambeyoncelowe likes this.
  3. Simone

    Simone Senior Member (Voting Rights)

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    Thanks for that, @Andy! That was great!

    I didn’t understand the distinction between CureME and the UK ME/CFS Biobank, I thought they were the same thing. Good to have that explained. They clearly have developed a top notch biobank to have come runner up in the UK for best biobank, which is something for the UK ME/CFS community to be proud of. And great to hear that they’re looking at collaborating with others to help set up similar biobanks using their protocols elsewhere.

    I especially liked their caution in how they describe their results. I’m sure it’s difficult to not jump ahead or toot one’s horn (especially if there’s a chance that tooting might lead to $$$), but I really appreciate the caution.
     
    Last edited: Jun 15, 2019 at 8:42 AM
  4. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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    Well done @Andy !

    I was a bit surprised by their answer to the question of whether the handgrip strength test could do a few more repeats to see if ME/CFS patients show a decline as the exercise progresses. They argued that they do not want to do that because they are afraid to make patients worse. I would have thought that a few more repeats wouldn't cause a significant relapse except perhaps in patients with severe ME/CFS (which could be excluded) - but it's good to see they are being cautious with this. Rather have a research team that is a little too cautious than the other way around.
     
    It's M.E. Linda, obeat, Andy and 2 others like this.
  5. TiredSam

    TiredSam Moderator Staff Member

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    There was a time when grating a bit of cheese for a baked potato or opening a bottle with a stiff top was something I wouldn't risk because it could leave me on the sofa for a couple of hours, and I only have mild ME, so I think they were quite right not to risk it.
     
  6. theJOYdecision

    theJOYdecision Established Member (Voting Rights)

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    Just viewed this. Thanks @Andy for setting this up. This is so meaningful to remove the barriers between us and the researchers. :thumbup:
     
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  7. Hutan

    Hutan Moderator Staff Member

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    rvallee, Trish, Kalliope and 2 others like this.

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