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Cfsac day two

Discussion in 'Action Alerts and Advocacy' started by George, Oct 13, 2010.

  1. Sasha

    Sasha Fine, thank you

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    It has gone very quiet... I can't watch the broadcast for tech reasons so no clue what is going on... did Cort get to do his testimony? Anything exciting happening?
  2. Hope123

    Hope123 Senior Member

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    Dr. Jones brought up the issue of Blue Cross denying payment for medical appointments with the diagnosis of "CFS" in ?NY when Mayra Alvarez from the Office of Health Reform spoke. I don't think Ms. Alvarez, while seeming like a pleasant person, got it. If Blue Cross is denying for a diagnosis (vs. a treatment or MD choice, which they can still decide on per their own rules), it would set a very bad precedent for all health insurance companies. It would be like telling people with heart attacks not only which doc see you (which they already do and it's legal) but rather "we won't cover you at all." Dr. Jason has this right when his question brought this up as a discrimination (based on illness)/ civil rights issue. I don't know if Ms. Alvarez is the right person to bring this up to but I couldn't find an e-mail for her on DHHS. If anyone does, please post it.
  3. George

    George waitin' fer rabbits

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    South Texas
    I'd be happy if we just got some of last years recommendations acted upon. Wouldn't have to be anything new.
  4. Lynn

    Lynn Senior Member

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    I lost the audio.
  5. Hope123

    Hope123 Senior Member

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    I just lost audio and video in the middle of a great testimony!
  6. Frank

    Frank Senior Member

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    same thing here
  7. OverTheHills

    OverTheHills

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    Me too. grrr
  8. Dorothy

    Dorothy

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    My screen now says "broadcast concluded" - what? The old NIH webcasts always kept on going till the meeting ACTUALLY ended; this one seems to have simply cut off at 5PM Eastern time. I hope the archived footage will have everything included - that was a great testimony that got cut off. Somebody fire Granicus or whatever this new video contractor is called.
  9. Lynn

    Lynn Senior Member

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    Could somebody please contact Wanda Jones to let her know of the problem?

    Lynn
  10. waiting

    waiting Senior Member

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    I just called Granicus and spoke to tech support -- he confirmed there was a problem. I asked that even if they couldn't broadcast live for some reason, could they please try to make sure it's available in the archived video afterward.
  11. Hope123

    Hope123 Senior Member

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    I asked CFSAC to get another contractor next meeting or use in-house NIH videocasting.
  12. Sasha

    Sasha Fine, thank you

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    Was anything interesting said before the big glitch? Sounds as though there was some superb testimony but of course we're the choir they're preaching to - anything new to us that would make the officials really sit up and notice?
  13. RivkaRivka

    RivkaRivka Senior Member

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    bob did great in his testimony, and in it he says 1500+ emails have been sent. that does not include faxes and calls. WE ARE GOING STRONG AND DOING GREAT!
  14. RivkaRivka

    RivkaRivka Senior Member

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    I am furious that we lost the live feed. crap!
  15. Sasha

    Sasha Fine, thank you

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    Wow! Impressive!
  16. anciendaze

    anciendaze Senior Member

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    If NIH is willing to outsource so much of their support of CFSAC, why don't we switch tactics and push for outsourcing everything to do with ME/CFS? I have an organization in mind for the job.
  17. urbantravels

    urbantravels disjecta membra

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    arrrrgh, why do these things never work???
  18. Trooper

    Trooper Senior Member

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    Ahh boo, I thought it was just my connection that was playing up - it would show a few seconds, then buffer for ages, then show a few seconds etc. It was so much better last time - I hope they can sort it out for the next one : )

    I'm also super impressed with the email count - good stuff :)
  19. George

    George waitin' fer rabbits

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    What amazed me about today was the fact that we were all kept so busy! I've never seen a CFSAC meeting like today's. They trotted out all of these nice speakers, many who had nothing to offer us at all, and just kept talking about all these "other" things completely redirecting attention from the issue of XMRV. (head shake)

    So the question that I have to ask, is this an attempt to bury the research? I mean what is the point of ignoring the XMRV question so completely? If we just pretend the elephant isn't in the room will that make it disappear? This is "our" advisory committee, they have our interest at heart why all the pretending??? In the desperate attempts to buy time today would, get either get top ranking or bottom ranking I'm not sure which, as just plain crazy.
  20. RivkaRivka

    RivkaRivka Senior Member

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    these were exactly my thoughts!!!!

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