There is something very simple, and very important, that you can do: Watch the CFS Advisory Committee meeting on June 13th and 14th.
Why does it matter? In 2009, the CFSAC began videocasting its meetings. Viewership for the meetings was usually around 800 people, and the CFS community began paying a great deal more attention to the committee’s proceedings. Then in November 2011, videocasting was dropped as “too expensive” and only phone-in access was offered. Participation dropped to approximately 200 people. CFS advocates lambasted the Department of Health and Human Services for dropping video access. We pointed out how essential video was for patients, many of whom are too sick to attend in person and too sick to hold a phone to their ears for 8 hours a day. I found it very difficult to follow the discussion at the meeting because I could not see the speakers, those speakers did not identify themselves, and the presentations were not made available until after the meeting.
But we were heard!!!! Videocasting has been restored for this week’s meeting, and here’s where you come in. If only 200 people watch this meeting, DHHS could make the case that videocasting does not increase patient participation. So let’s make sure we have high participation! Here are the instructions for joining the meeting:
On June 13-14, 2012, the meeting will provide a live video stream at www.hhs.gov/live and be available by audio (listen only) at 1-888-677-1834. Passcode: CFSAC 2012
PLEASE log in and watch the meeting. Even if you have no interest. Even if you are too sick. Log in with your computer and let it run all day. DHHS will be paying close attention to the viewership numbers. Show them that we are paying attention!
UPDATE: Link fixed for live streaming of meeting.