A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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CFSAC Meeting - Federal Response to XMRV

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Oct 30, 2009.

  1. oerganix

    oerganix Senior Member

    My email answered by Wanda Jones

    I emailed her, saying thank you for the webcast and telling her that this is the first time in 27 years that I have felt like my government gave a damn about my suffering with this illness. This is what she replied:

    "Thank you, Lilly. I'm hopeful I can shake some things loose; that's my history, and I don't plan to give up. You and many like you who take time to email keep me energized. Take care. Wanda"

    Let's keep Ms. Jones and others energized by contacting them with praise when they do something good.
  2. acer2000

    acer2000 Senior Member

    I think the only common sense answer to this one is the same answer that should have been given to any CFS/FMS patient if they try to give blood - DON'T. Just because we "don't know" what causes this illness doesn't mean its not infectious. The best idea is to err on the side of caution and not give blood - regardless of what the cause ends up being. The same should be said for any illness of uncertain etiology such as MS, RA, Lupus, etc..

    From the WPI facebook page (yeah I know) - http://www.facebook.com/note.php?note_id=165442553025 :

  3. Marylib

    Marylib Senior Member

    New Zealand
    A few weeks, huh?

    A report from the Blood Safety People is due in a few WEEKS? How interesting and proactive of them.

    I know this belongs back on the advocacy thread, but I really really want to get a bus load of people to a blood bank in DC. Soon. First we stop by the blood supply safety office, to let them know what we are doing. Then we tell the media. Then we go to the blood bank and insist that curtains be drawn before we donate. We take one video cam and reporter in with us and do a countdown before our possibly tainted XMRV drips into the national blood supply...Let's see if anyone tries to stops us. Either way, it will be great and will keep us in the news.

    Marylib, armchair activist
  4. citybug

    citybug Senior Member

    I think we've nobly kept our blood out of the supply because we knew it was something bad we had, even though no one else knew.
    I think they'll find the 3.7% general population amount.
    It's very encouraging that they are looking. Maybe we could do a poll?

  5. Roy S

    Roy S former DC ME/CFS lobbyist

    Illinois, USA
  6. CFSAC Meetings, Days 1 & 2 are now archived to vew.

    ( I am not sure where to post this. Move it to...wherever, if need be. ) Just wanted to make a note that the CFSAC meetings, Days 1 and 2 are now archived as video on the NIH site as 'past events', 'most recent videocasts'.



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