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Center for Solutions for ME/CFS - news and updates from Columbia University's NIH funded center

Discussion in 'BioMedical ME/CFS News' started by Andy, Oct 22, 2017.

  1. Andy

    Andy Committee Member & Outreach

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    Columbia's announcement of the grant award.
    https://www.mailman.columbia.edu/pu...yelitischronic-fatigue-syndrome-collaborative

    NIH announcement
    https://www.nih.gov/news-events/new...alomyelitis-chronic-fatigue-syndrome-research

    Microbe Discovery Project announcement
    http://microbediscovery.org/2017/09...centers-data-management-center-announcements/
     
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  2. Andy

    Andy Committee Member & Outreach

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    Coverage from Simmaron (who are one of Columbia's partners)
    http://simmaronresearch.com/2017/10/simmaron-lipkin-nih-chronic-fatigue-syndrome-research-centers/
     
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  3. Andy

    Andy Committee Member & Outreach

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    Article in Columbia Public Health 2018 newsletter
    columbia.jpeg
     
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  4. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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  5. Andy

    Andy Committee Member & Outreach

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  6. Andy

    Andy Committee Member & Outreach

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    Source: Direct communication with me.
     
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  7. Andy

    Andy Committee Member & Outreach

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  8. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

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    Okay, thanks for letting us know. It seems quite unprofessional that there was no communication throughout the process, including no announcement that a committee has been selected.
     
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  9. Andy

    Andy Committee Member & Outreach

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    Sadly, I can't disagree.

    Just to expand on my "Direct communication with me", I asked them via DM on Twitter "Hi there, is there any update on your patient advisory committee that you were taking applications for last year?" on the 12th Feb, chased it up after no response 2 days later, and then received the above response late yesterday. Hopefully they will improve their interactions with patients in the future, it certainly needs a lot of work at the moment.
     
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  10. Andy

    Andy Committee Member & Outreach

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    Update from the Microbe Discovery project
    Code:
    https://www.facebook.com/notes/the-microbe-discovery-project/microbe-discovery-project-merges-with-cii-center-for-solutions/2121009531301403/


     
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  11. Andy

    Andy Committee Member & Outreach

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  12. Andy

    Andy Committee Member & Outreach

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    The plan had been for the name of the The Microbe Discovery Project Facebook page to be changed over to the Centre for Solutions for ME/CFS, but Facebook wasn't happy for this to happen, so there is now a new Facebook page, https://www.facebook.com/CfSforMECFS/
     
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  13. Andy

    Andy Committee Member & Outreach

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    They are also engaging with patients on Reddit


    Thank you to the person on Reddit who recommends they engage with us here.
     
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  14. Forbin

    Forbin Senior Member (Voting Rights)

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  15. Andy

    Andy Committee Member & Outreach

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  16. Andy

    Andy Committee Member & Outreach

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    If anybody has any questions that they want put forward and don't want to post on Reddit then post them in this thread and I'll get them passed on. Time is tight though, as I understand that these will be filmed on Friday, so you'll probably need to post in the next two days.
     
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  17. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Hmm I guess I missed this? Also agree with above mentioned reddit comment that they should engage here—I don’t usually check reddit.
     
  18. Three Chord Monty

    Three Chord Monty Established Member (Voting Rights)

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    I'm not big on people saying 'why wasn't I told,' but I am scratching my head a bit at this because I sure didn't see any mention of it anywhere. Can't imagine it was open to the public. Strikes me as kind of unusual that you put all of these well-known ME experts (plus Unger, Nath, Lipkin, etc) in a room & there isn't much chatter about it somewhere, anywhere, even on Twitter where I found this...

     
  19. Andy

    Andy Committee Member & Outreach

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    As I understand it was a meeting of all those involved in the Columbia Collaborative Research Center. Jaime would have been there as a representative for MEAction, who are on board as, obviously, patient representatives.
     
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  20. Andy

    Andy Committee Member & Outreach

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