Julie Rehmeyer's 'Through the Shadowlands'
Writer Never Give Up talks about Julie Rehmeyer's new book "Through the Shadowlands: A Science Writer's Odyssey into an Illness Science Doesn't Understand" and shares an interview with Julie ...
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New MECFS Alert - Episode 69 pt 2 - Carol Head of SMCI (CAA)

Discussion in 'Action Alerts and Advocacy' started by caledonia, Nov 5, 2014.

  1. caledonia

    caledonia

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    First off, just a note to say this new episode is up, to help Llewellyn get the word out.



    Second, has anyone else noticed how Carol Head avoids the IOM, P2P redefinition issue when Llewellyn brings it up? She goes straight to saying how little money there is for research. Never mind that if the IOM and P2P go through, any research done will be garbage because of the garbage definition.

    Not that I was counting on the SMCI for any help or anything, but still :bang-head::bang-head::bang-head:
     
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  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Clearly the IOM P2P issue is not on her list of talking points.
    Somehow that translates as not relevant to address.
     
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  3. Nielk

    Nielk

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    Yes. I noticed.

    SCFSI is a research organization now who are dependent on government funding. They will not do anything that can be construed as acting against the government.

    If they don't get continued funding they will crumble.
     
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  4. PNR2008

    PNR2008 Senior Member

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    That explains it all.
     
  5. Denise

    Denise Senior Member

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    Thanks Nielk - I was not aware that SMCI currently receives government funding. Where can I read more about this?
     
  6. Nielk

    Nielk

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    http://solvecfs.org/research/funding-mecfs-research/

    This page shows research efforts by SCFSI. If you follow some of the details you will see that several of these researchers have received quite a nice amount of "follow on" funding as a result of SCFSI's seed funding. These grants are from the NIH.
     
  7. Denise

    Denise Senior Member

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    Oh.
    I think I misunderstood "SCFSI is a research organization now who are dependent on government funding."
    I did not realize you meant that the researchers later got government money.
    I thought you meant that SMCI gets government money.
    My mistake.
     
  8. Nielk

    Nielk

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    They state that 100% of their income is from private funding. This might be true but it is very important for them to have a good relationship with the government since the NIH ends up "follow on" funding for their researchers. Without these added grants, they would not be able to make large accomplishments.

    This might be true of other ME/CFS research organizations and that is probably why we don't see any of them reaching out to advocate for us against the government agencies.
     
  9. Forbin

    Forbin Senior Member

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    I wonder if part of the reason that they changed their name from CAA to SMCI had to do with their move to Los Angeles.

    In Los Angeles, "CAA" means one thing, the Creative Artists Agency, one of the biggest talent agencies in the world.

    [​IMG]
     
  10. caledonia

    caledonia

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    I didn't realize they had moved. When did that happen?
     
  11. Forbin

    Forbin Senior Member

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    I'm not sure when the move was made, but it is mentioned at the 7:45 mark in Part 1 of the interview.

     
  12. Hate ME/CFS

    Hate ME/CFS

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    Carol Head's expertise is in marketing, schmoozing, etc. The first years of CFIDS/CAA with its founder, Marc Iverson was all about the patient & ME/CFS. The CAA/SMCI is now a puppet organization of HHS/NIH/CDC, and are a disgrace to the ME/CFS population. All they want is their seat at the table, which they are not putting to good use.
     
    Marylib likes this.

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