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Watch Oct 3-4 to show the US gov't you care about ME/CFS

Discussion in 'Action Alerts and Advocacy' started by Hope123, Oct 1, 2012.

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  1. Hope123

    Hope123 Senior Member

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    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
     
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  2. Omar88

    Omar88 Senior Member

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    Can you please provide meeting timing at GMT ?
     
  3. Hope123

    Hope123 Senior Member

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    9AM in "United States - District of Colombia - Washington DC" translates to 1PM Greenwich Mean Time (or 2PM in London).

    Times can be converted using the following link. For the time to convert from, scroll down the list until you see the red location above. The "To" time of course is your own location.

    http://www.timeanddate.com/worldclock/converter.html
     
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  4. jspotila

    jspotila Senior Member

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    I just want to second what Hope123 said - PLEASE PLEASE watch this meeting, even if you leave the computer on and have to lie down in another room. The numbers really matter.

    For those who prefer audio only, you can call in to the meeting in listen-only mode at 1-866-761-7202. Passcode: 3117619.
     
  5. Nielk

    Nielk

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    I agree. The more people watch this, the better. Even if you just watch it partially or like jspotila said, leave the computer on if possible.
     
  6. Nielk

    Nielk

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    I agree. The more people watch this, the better. Even if you just watch it partially or like jspotila said, leave the computer on if possible.
     
  7. SOC

    SOC Senior Member

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    Hope123, for figuring out all the details and making it so easy for everybody to watch. I will be there.
     
  8. Hanna

    Hanna Senior Member

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    Thanks for the links!
     
  9. Nielk

    Nielk

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    It started.:)
     
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  10. SpecialK82

    SpecialK82 Senior Member

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    Is the video dark for you guys? It gets better and worse depending on the shot
     
  11. Nielk

    Nielk

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    Mine just stopped
     
  12. Nielk

    Nielk

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    Ok..back on.
     
  13. Dolphin

    Dolphin Senior Member

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  14. Nielk

    Nielk

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    They are ahead of time. Dr. Dimitrakoff is starting to speak NOW regarding biomarkers.
     
  15. SpecialK82

    SpecialK82 Senior Member

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    I am trying to write down the times the meeting stops and starts again. In other meetings, break times have run on, and we have started the meeting late, also people have left eary the second day. I would like to submit this information back to Galean Marshall that we gathered for the last meeting and for this one.

    Could someone help me with tracking the times for the afternoon on both days? I have to lie down in the afternoon and can't listen.

    Thanks!
     
  16. SpecialK82

    SpecialK82 Senior Member

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    Yep Nielk - so happy we are ahead of schedule right now :)
     
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  17. Dolphin

    Dolphin Senior Member

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    For anyone on Twitter, @janwly is tweeting about the meeting.
    Perhaps there are others too?
     
  18. SOC

    SOC Senior Member

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    Blast! I missed the conclusion of Dr Fletcher's talk. Can anyone feel me in?
     
  19. Hope123

    Hope123 Senior Member

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    The June meetings are posted online BUT it took the government more than a month to have them up. (There was no streaming online live in June; people had to sit next to their phones for 8 hours.) This is TOO long. If one is trying to work with media, legislators, or other people and want to reference a governmental source, these folks are not going to wait a month. By that time, it's old news.

    It also took more than 3 months for them to post the CFSAC recommendations and took several people writing in for them to do so.
     
  20. Hope123

    Hope123 Senior Member

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    Current livestream is off. Have called DHHS.
     
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