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Open (California, USA) CDC-funded study on children aged 10-17 with ME/CFS

Discussion in 'Recruitment into current ME/CFS research studies' started by Dolphin, Dec 21, 2019.

  1. Dolphin

    Dolphin Senior Member (Voting Rights)

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  2. Hutan

    Hutan Moderator Staff Member

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    I think researchers should provide more information up-front than this flyer does.

    Where are the OMI sites? What specifically are the researchers aiming to investigate? Who are the researchers and what background do they have that will ensure that this study is useful?
     
  3. Trish

    Trish Moderator Staff Member

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    I agree. I was confused at first assuming it was OMF, but the flyer says it's OMI, whatever that is. It also mentions the CDC. There should be a website or at least a link to a registered protocol.
     
  4. Denise

    Denise Senior Member (Voting Rights)

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    This flyer is probably about the pediatric portion of the CDC multi-site study.
     
  5. Dolphin

    Dolphin Senior Member (Voting Rights)

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    A little bit of background information for what it's worth: the Open Medicine Foundation was originally the charitable arm of the Open Medicine Institute before going its own way after a while.
     
  6. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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  7. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    I never figured out the relationship between OMI and OMF. I asked one time and I think they may have used the same person to set up both charities. I read somewhere that Vinod Khosla put up the initial money for the research arm of OMI (Andy Kogelnik). Vinod Khosla was a founder of Sun Microsystems and I believe he has a family member with ME/CFS. He attended Rons Davis's 2018 Stanford Working Group Meetings (saw his nameplate in a tweet)
     
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  8. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Here are the first accounts for the Open Medicine Foundation as far as I recall. There is only one officer listed: Andy Kogelnik
     

    Attached Files:

    Last edited: Dec 22, 2019
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  9. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    This seems to be the other OMI part involved

    OMI - Howard Young Foundation Tick-Borne Illness Center of Excellence
    https://www.howardyoungfoundation.org/appeals/tick-borne-illness-center-of-excellence/
     
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  10. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

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    I agree. CDC has said that it is expanding its long-running multisite study to include a study of pediatric patients.
     
  11. Denise

    Denise Senior Member (Voting Rights)

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    I looked back through some notes. In 2017 CDC put out a solicitation about the ped. portion of the multi-site study. Sometime after that (don't recall exactly when) I believe OMI was given a sole-source contract for this portion of the study.
     
  12. Trish

    Trish Moderator Staff Member

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    Merged thread

    https://www.meaction.net/2020/02/21...medicine/?mc_cid=b809ad9981&mc_eid=83ddbd3a71

    #MEAction article:

     
    Last edited: Feb 22, 2020
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