Hope123
Senior Member
- Messages
- 1,266
This Wednesday and Thursday, October 3/ 4, from 9AM to 5PM Eastern Standard Time, the federal government is holding its Fall meeting concerning ME/CFS. The meetings are held twice a year, once in Spring and once in Fall usually. This meeting is where government officials from various agencies (Medicare/ Medicaid/ CDC/ NIH/ Social Security/ etc.) discuss ME/CFS policies and hear from the public what their concerns are.
Please plan to watch some or all of the meeting if possible. Government officials count the number of viewers as evidence (or lack of evidence) of interest by the public in ME/CFS. We've had several times, including the June 2012 meeting, where officials have NOT put the meetings online for the public to see. Online access is important because so many of us are too sick to go to the meeting in person. Without good access, the government can, have, and will develop policies that might not help us and may hurt us. Many advocates and individuals have worked together these last few months to get the meetings back online. Show the government YOU care about ME/CFS by watching the meetings. International viewers can also watch the meeting and be counted.
Here is the link to watch. Nothing will activate yet when you press play since the meeting will not be live until Wednesday morning.
http://www.hhs.gov/live/
The meetings may also be archived for future viewing but that may take weeks to months.
Here is the agenda:
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20121003_agenda.html
Please plan to watch some or all of the meeting if possible. Government officials count the number of viewers as evidence (or lack of evidence) of interest by the public in ME/CFS. We've had several times, including the June 2012 meeting, where officials have NOT put the meetings online for the public to see. Online access is important because so many of us are too sick to go to the meeting in person. Without good access, the government can, have, and will develop policies that might not help us and may hurt us. Many advocates and individuals have worked together these last few months to get the meetings back online. Show the government YOU care about ME/CFS by watching the meetings. International viewers can also watch the meeting and be counted.
Here is the link to watch. Nothing will activate yet when you press play since the meeting will not be live until Wednesday morning.
http://www.hhs.gov/live/
The meetings may also be archived for future viewing but that may take weeks to months.
Here is the agenda:
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac20121003_agenda.html
