Give ME the Money
Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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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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