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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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CFSAC Day 3 10/14/10

Discussion in 'Action Alerts and Advocacy' started by jspotila, Oct 14, 2010.

  1. RivkaRivka

    RivkaRivka Senior Member

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    george, i think she was this woman:

    Catherine Laughlin, Ph.D.
    Chief, Virology Branch
    Division of Microbiology and Infectious Diseases
    NIAID, NIH, DHHS
     
  2. George

    George waitin' fer rabbits

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    Woho, Thanks Waiting.
     
  3. RivkaRivka

    RivkaRivka Senior Member

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    wanda is trying to stop the holding of signs in the back. she is saying it is hurting the panel and likley the people in the webcast audience. she said the white pieces of paper are causing eye glare.

    give me a break!!!!
     
  4. glenp

    glenp "and this too shall pass"

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    I cant see or hear video - got my emil off to that guy who will be taking emails??? here it is and his generic reply I got back


    Dear Dr Morgan

    That is great that you will be answering emails now

    We need funding for people that can find these retroviruses---forget about funding for the other stuff right now -- these retroviruses have to be top priority for us now. What are you going to do about this?

    Thank you
    glenn

    From: Mangan, Dennis (NIH/OD) [E] (dennis.mangan@nih.gov)
    Sent: October 14, 2010 8:14:16 AM


    Thank you for the email. I am out of the office until Friday, October 15, and will not be able to respond to you immediately. For urgent matters please call 301 402-1770.All the best, Dennis Mangan, ORWH, OD, NIH
     
  5. George

    George waitin' fer rabbits

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    Go Glennp!
     
  6. Jessrose21

    Jessrose21

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    I find the coughing and sneezing and nose blowing far more distracting! In fact, I haven't noticed any "glare" from the signs at all.
     
  7. Hope123

    Hope123 Senior Member

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    Maybe this should be under Science Day (Day 1 post) but I was thinking about Houghton's summing up of Science Day and his negative views on XMRV and Dr. Glaser's pounding on EBV during the talks. Although we don't like to think about it, conflicts of interest do permeate people's opinions conciously or not.

    For Glaser's comments, it's pretty obvious since his work is on EBV and indeed, EBV needs to be looked at for ME/CFS.

    For Houghton, I remember now that he is one of the executives (or higher-ups anyway) for Epiphany Biosciences which has medicines in development for herpes viruses. This might inform why he might not be as interested in XMRV for non-scientific reasons; this is not to say that his interests might be entirely scientific but something for people to consider. Also, he commented during that time that perhaps mono be treated early to prevent CFS (which I thought was an odd to just pop in during the summary) ; while this is a good topic to consider, I also remembered that Epiphany is one of the groups running a trial of treating acute mono with their new drug.
     
  8. citybug

    citybug Senior Member

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    The signs were so great yesterday, have to keep them. We love them. I was thinking it is such a great protest, no interruption at all, how can they complain, and now they blame for video problem. No one was moving at all everyone was listening so hard to the speaker, and it was exactly 5:00 so the video people probably had times wrong.
    So it sounds like they didn't discuss xmrv or make corrections in am science section? It took me an hour to get sound.
     
  9. George

    George waitin' fer rabbits

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    And now we can't get rid of the sound, AAARRRR. Jspotilia I love jazz but I only listen to it when I'm able ya know? I have to say today this music is really annoying me. I know gripe, gripe, gripe.
     
  10. jspotila

    jspotila Senior Member

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    I am so with you, George. Ear scratches help?
     
  11. waiting

    waiting Senior Member

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    Excellent public comments -- and congratulations, Rivka, for getting your wonderful video into the public record of this meeting.
     
  12. RivkaRivka

    RivkaRivka Senior Member

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    thanks! i'm surprised they accepted it.

    did kim allow the teeshirts behind her when she spoke? that is not using an inside voice. did she change her mind and decided to use her outside voice?
     
  13. Dorothy

    Dorothy

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    I slept thru the morning session and am just now experiencing all that "Jazz" now that the committee is on break. With or without coffee, it's darned annoying!


    I did get out of bed in time to catch all the patient testimony - thank you to everyone; it was moving, educational, and very powerful.
     
  14. George

    George waitin' fer rabbits

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    (big grins) Ear scratches are great!

    Rivika your video was awesome. I'm sooooo glad they showed it!

    I think it would be so cool to cut it to a 60 second spot and then pull money together to air it on every TV station that well, that we could afford.

    If you educated the public, they educate the doctors, who educate the senators they play golf with who then educate the government agencies.
     
  15. RivkaRivka

    RivkaRivka Senior Member

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    that would be great, george! but who can undertake doing that task? so much work. and hard to raise money, as the team working on the washington post ad knows.
     
  16. ballard

    ballard

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    One of the comments I heard from the committee was that someone said Seattle would be interested in a ME/CFS hub. Does anyone know which member of the committee said that. I'm in Seattle and would really like to know who would be interested in a hub in our area.
     
  17. urbantravels

    urbantravels disjecta membra

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    just youtube it. who watches TV any more? I haven't had broadcast TV in my home for more than four years now.
     
  18. George

    George waitin' fer rabbits

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    Who in the world has ask that ME be removed from the ME/CFS??? I really like the ME or ME/CFS.

    Right on Dr. Jason and Dr. Levin!!!!!!!!!!!!!!!

    We're going to be changing the name in the future to something with Neuro-Immune????

    Wow did we just get renamed!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
     
  19. Hope123

    Hope123 Senior Member

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    Steve Krafchik, a lawyer, said that because the University of Washington Harborview Medical Center used to have one of the centers for CFS back in the early 2000s headed by Dedra Buchwald. The problem is that I've heard the waiting list is long, the clinic isn't helpful, and Buchwald's work over time has shifted more to "chronic fatigue." But you can ask other people for their opinion as well.
     
  20. urbantravels

    urbantravels disjecta membra

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    What's this? Are we getting a new name??
     

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