1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

CCFS Advisory Committee Meeting - Will be Webcast Live

Discussion in 'General ME/CFS News' started by Summer, Oct 20, 2009.

  1. dannybex

    dannybex Senior Member

    Messages:
    2,241
    Likes:
    562
    Seattle
    Thanks to all...

    I couldn't watch any of it because I'm on dial-up. Not to mention the fact it started at 6AM pacific time...and my lower back has been giving me a lot of trouble the past few days...

    So I'll say this one more time and then shut up(!):

    I hope at some point it can get posted on YOUTUBE, because even those of us with dialup (or even DSL) can then let the video load (it doesn't seem to work that way on many other sites), and then watch it smoothly, without interruptions.

    Thanks to all!

    Over and out.

    Dan
     
  2. dannybex

    dannybex Senior Member

    Messages:
    2,241
    Likes:
    562
    Seattle
    VERY COOL. If only it could be patented! :(

    d.
     
  3. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    the thought that comes to mind

    I have DSL but kept getting the message that dial-up modems are not supported and only showing 227.14KBytes/sec. Not being tech savvy, I kept thinking all day that I had done something wrong. I refused to stress about it (sort of), felt a little left out, and finally late afternoon thought to call my internet provider and ask for help. Turns out there are "errors on the line" of unknown cause. They will send out a technician tomorrow. Slap forehead. It wasn't that I was doing something wrong . . . Sounds so familiar. I haven't been sick for twenty-seven years because I haven't been eating right, or thinking right . . . After XMRV hit the news, the thought that comes to mind is "It's the virus, stupid." I feel like I can breathe again.
     
  4. richvank

    richvank Senior Member

    Messages:
    2,717
    Likes:
    756
    To Cort and Janis--Thank you!

    Cort and Janis,

    Thanks very much to both of you for putting in a plug for the glutathione depletion--methylation cycle block treatment. I think most of the committee has heard about it before (some many times, ad nauseum!) but maybe it will eventually get through to them that it's worth considering. I hope so.

    Thanks again.

    Rich
     
  5. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    Forgot to say that tomorrow someone to do with blood supply safety will be there in person
     
  6. froufox

    froufox Senior Member

    Messages:
    397
    Likes:
    65
    What an amazing day!! I managed to watch almost all of it and found the whole thing very moving and empowering. It was incredible watching all of the testimonials, with everyone eloquently expressing what we are all so familiar with.

    Thanks to Cort and everyone else for your great contributions. You did especially well having just had 3 hours sleep Cort, hope you get a good nights sleep tonight! Looking forward to tomorrow.
     
  7. anne

    anne Guest

    So at some points during the day I actually had to go attend to my child. Who was it who coined Reeves' disease? And is that transcript anywhere?
     
  8. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
  9. shrewsbury

    shrewsbury member

    Messages:
    1,540
    Likes:
    55
    youtube has parts of the meeting

    I missed most of the morning so missed Whittemore and Peterson and have been looking for them on youtube. A wonderful person named Khalyal is posting bits. Thank you Khalyal.

    By typing in cfsac day 1 so far I've caught most of early Peterson (Part 1 - 5, part 2 was further down the page) and most of the lead up to Whittemore's speech (part 6) .Whittemore hadn't been invited to speak and hadn't signed up.

    I like both that moderator explained the rules and would not let her speak without following the rules -level playing field, due process and all that - and that the chair found a way within the rules for her to speak. Now I just have to wait for it to get posted!

    Patient testimony 1 and 2 are up - thank you luiminescentfeeling! Worth watching and I agree with the captions -

    #1(husband - Robert Miller) "speaks for itself" http://www.youtube.com/watch?v=tvJK0cogkXY

    and #2(wife - Courtney Alexander) "she nails it" http://www.youtube.com/watch?v=RXGNDnoHWnI

    Janice Bell's (patient #4) also just got posted - well done Janice! http://www.youtube.com/watch?v=uUiKRCOtgXs


    #6 "I feel like I'm in Oz and the house has just fallen on the CDC" http://www.youtube.com/watch?v=As55e7wd54g

    Just saw that the representative from the CDC who came in place of Reeves (poor fellow) just got posted as well so must go check it out - no, they've mixed it up with the FDA

    #5 Dr Joan Grobstein is amazing http://www.youtube.com/watch?v=WUDyby8A7tI
    a paraphrase: "Reeves Disease" a group of people with idiopathic chronic fatigue, other diseases and some, not all, majorly depressed people. These people need study, but they don't have CFS
     
  10. anne

    anne Guest

    Thank you. That was wonderful.
     
  11. _Kim_

    _Kim_ Guest

    Just had to watch it again. Dr. Joan Grobstein is her name. And she's got sassssss!!! From her first to the very last word, this was one well composed testimony: "I could say much more, but my time is up. I have submitted additional written testimony. Please read it."
     
  12. gracenote

    gracenote All shall be well . . .

    Messages:
    1,508
    Likes:
    42
    Santa Rosa, CA
    watching on YouTube

    For those of you who couldn't watch it live, there is a lot now available on YouTube.

    If you're like me and need help . . . (sorry to those for which this is OBVIOUS -- I'd add a happy face except I haven't figured out how, yet!)

    Go to You Tube.
    Type in CFSAC Meeting.
    When page opens select "today" on tab that says Uploaded.
    Enjoy.

    (There might be SOMEONE who needs this help! It took me awhile to figure it out. It's the virus . . . Oh never mind!)

    If all else fails try this link:

    http://www.youtube.com/results?uploaded=d&search_query=CFSAC meeting&search_type=videos

    I've only watched the patient testimonies so far. I actually like watching it in pieces rather than live. Live, like life, keeps going whether I'm ready or not. Not the same as being there, or watching it when, but it works for me.
     
  13. anne

    anne Guest

    After today, I've decided the WPI should do a fundraising "Women of CFS" calendar, with the intellectual hotness of Dr. Klimas, Dr. Mikovits, Annette Whittemore, and Dr. Grobstein. They don't need to wear swimsuits--just pose with lab equipment or research papers, it will be most sexiful.
     
  14. Koan

    Koan Be the change.

    Messages:
    2,598
    Likes:
    55
    I love your sexificious idea!

    :D
     
  15. _Kim_

    _Kim_ Guest

    Cort?

    Cort, can you tell us anything about why Hillary Johnson chose not to speak at the meeting. I was disappointed. There was that awkward moment when Wanda called her, she declined to speak and then you came up after some more confusion.
     
  16. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    Klimas is kickass hot.
     
  17. _Kim_

    _Kim_ Guest

    It's the glasses that do it for me ;)
     
  18. hvs

    hvs Senior Member

    Messages:
    292
    Likes:
    0
    It's her "nailing" the CDC guy, for me.
     
  19. Alice Band

    Alice Band PWME - ME by Ramsay

    Messages:
    175
    Likes:
    0
    UK
    Koan,

    Was that the bit at the end of Dr P's speech and he looked behind him and it appeared that some people were giving him a standing ovation? (not sure how many).

    It must have felt wonderful but he seemed at the same time to be very modest and humble. What a great guy.
     
  20. Rrrr

    Rrrr Senior Member

    Messages:
    1,397
    Likes:
    264
    cfsac testimony that did not make it in today

    here is a patient testimony that did not make it in today to the actual meeting, but made it to youtube. very powerful

    http://www.youtube.com/watch?v=LvweCk44WHs
     

See more popular forum discussions.

Share This Page