How much time was given?

[Andrew]

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."

 

[justinreilly]

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

 

[Andrew]

Do we know how many patients and how many groups there were?

 

[WillowJ]

agenda with list:
http://iom.edu/~/media/Files/Activity Files/Disease/MECFS/Agenda27Jan14Website10Jan14.pdf

video playlist:
http://www.youtube.com/playlist?list=PLGTMA6Qkejfj8CzsYdyxTcHb6ZrhM6Jpn

@Denise 's list of the videos in order with notes about whose was whose:
http://forums.phoenixrising.me/index.php?threads/iom-meeting-all-videos-are-up.27956/#post-425988

 

[justinreilly]

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

 

[Andrew]

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."

 

[justinreilly]

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