Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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End of Year Update from the UK ME/CFS Biobank

Discussion in 'General ME/CFS Discussion' started by charles shepherd, Dec 28, 2016.

  1. charles shepherd

    charles shepherd Senior Member


    "The UK ME/CFS Biobank would like to share our significant achievements in 2016!

    We have completed recruitment of over 500 participants, thanks to the support of charities, private donations and a NIH grant, which have enabled the testing of exciting hypotheses related to immune mechanisms, genetic expression and evidence of viral infection in ME/CFS. We expect to have results of many of our studies published in the first half of 2017.

    A Christmas Appeal led by the ME Association raised funds to enable the opening of the Biobank to applications from external researchers in 2016.

    We have attracted considerable interest from researchers in the UK, other European countries, North and South America willing to benefit from our data and samples from well characterised cases of ME/CFS, all of whom have a medical diagnosis confirmed according to rigorous criteria.

    The long-term sustainability of the UK ME/CFS Biobank is a priority for us. We are now preparing to submit an application to the Wellcome Trust on their Biomedical Resources Grant call early in the New Year, which we hope, if successful, will contribute to an increased capacity of the Biobank to support biomedical research in the field.

    This is just one of the strategies we will put in place to ensure the resource is sustainable in the long term and will fully meet the expectations of people with ME/CFS and biomedical researchers in the field.

    We take the opportunity to thank all people who donated samples and shared their data with us, and all our sponsors and supporters who enabled us to reach this point.

    We also want to ensure our commitment to the principles we developed in partnership with people with ME/CFS, including the Biobank focus on ethical and high-impact biomedical research that can translate in benefits, less suffering and 'stigma' of all of those with ME/CFS.

    We wish you all a happy 2017!"

    Personal note: I'm afraid I won't be able to contribute to any discussion on this end of year update statement at the moment as I've been in bed since Xmas Day with a horrible chest and throat infection - there's a lot of it about in Glos at the moment!
    Demepivo, JohnCB, Solstice and 28 others like this.
  2. Cheesus

    Cheesus Senior Member

    Thanks for your work, Charles. I hope you feel better soon!
  3. hellytheelephant

    hellytheelephant Senior Member

    S W England
  4. Sasha

    Sasha Fine, thank you

    Very sorry to hear you're so unwell, @charles shepherd - I do hope you feel much better soon.
  5. Countrygirl

    Countrygirl Senior Member

    @charles shepherd I am sorry to hear that you have the lurgy that is infecting many round here. You are in good company because I understand the Queen is in bed with it too.
    Thank you for the update.
  6. rosie26

    rosie26 Senior Member

    Hope you get some improvement soon @charles shepherd. Rest longer than you think necessary to make sure you are fully recovered. And thanks so much for all the work you do.
  7. trishrhymes

    trishrhymes Senior Member

    Excellent news about the biobank progress. Thank you @charles shepherd for your work on this.

    Get well soon and rest well.

    It occurs to me that the application to the Welcome Trust biomedical resources grant fund may be in direct competition with the MEGA application.

    I hope the biobank application wins and MEGA are told they should be supporting the existing biobank and not trying to compete.

    There is nothing to stop all those biomedical scientists assembled by MEGA from individually applying to the biobank to use their samples for their studies.

    If the 2 projects are in direct competition for funding, it will be interesting to see which one 'wins'. If MEGA are funded and the biobank is not, perhaps that will provide us with evidence of where the power and influence lies.

    If anyone here is on the MEGA Patient advisory group they should be informed of this as it may effect their support or otherwise for MEGA setting up its own separate biobank. The PAG may advise MEGA to withdraw it's application in favour of supporting the use and expansion of the existing resource.

    If anyone knows any members of the PAG, can they tell them about this. I think they are due to meet today or tomorrow.
  8. Molly98

    Molly98 Senior Member

    Great news, thank you for your update @charles shepherd, sorry to hear you are not well, wishing you a speedy recovery. Thank you for all your hard work.

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