International ME/CFS and FM Awareness Day is May 12: The World Will Know
Did you know that May 12 belongs to us? Lots of us are aware of this. We share the buzz on it amongst ourselves. We add blue ribbons to profile pictures. We raise our voices, join our hands, mount the few podiums available to us and tug at the sleeve of the rest of the world.
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How much time was given?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Andrew, Jan 31, 2014.

  1. Andrew

    Andrew Senior Member

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    The contract said patients should have at least one day. How many patients spoke, and how much time was allowed for each? Three minutes? What about "advocates."
     
  2. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Patients got three minutes. The IoM-selected orgs and Jennie got 7 minutes.
     
  3. Andrew

    Andrew Senior Member

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    Do we know how many patients and how many groups there were?
     
  4. WillowJ

    WillowJ Senior Member

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  5. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    Thanks, Willow! I was too exhausted to look for it.
     
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  6. Andrew

    Andrew Senior Member

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    I think Eileen Holderman an extra slot donated by another patient. So keeping that in mind, patients and advocates were given two hours to speak. So does this count as "at least one day."
     
  7. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    The Statement of Work didn't mandate at least one day. They haven't heard from the subject-matter experts yet though.

    "During one or more public meetings, the Committee shall consider the testimony of ME/CFS patients, caregivers, and advocacy groups in addition to relevant subject-matter experts such as clinicians, researchers, service providers, and public health officials."

    https://dl.dropboxusercontent.com/u/57025850/MECFS IOM SOW.pdf
     

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