1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Leptin
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
Discuss the article on the Forums.

How much time was given?

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

  1. Andrew

    Andrew Senior Member

    Messages:
    1,945
    Likes:
    1,189
    Los Angeles, USA
    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 IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,167
    NYC (& RI)
    Patients got three minutes. The IoM-selected orgs and Jennie got 7 minutes.
  3. Andrew

    Andrew Senior Member

    Messages:
    1,945
    Likes:
    1,189
    Los Angeles, USA
    Do we know how many patients and how many groups there were?
  4. WillowJ

    WillowJ Senior Member

    Messages:
    2,854
    Likes:
    2,203
    WA, USA
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,167
    NYC (& RI)
    Thanks, Willow! I was too exhausted to look for it.
    WillowJ likes this.
  6. Andrew

    Andrew Senior Member

    Messages:
    1,945
    Likes:
    1,189
    Los Angeles, USA
    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 IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,167
    NYC (& RI)
    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

See more popular forum discussions.

Share This Page