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ME/CFS and the Magic of the Canine Factor
There's been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They've been fairly indifferent to my presence and we've shared a live-and-let-live...
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FDA Workshop on Drug Development for CFS and ME

Discussion in 'General ME/CFS News' started by Ember, Feb 21, 2013.

  1. Sasha

    Sasha Fine, thank you

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    I didn't register (didn't want to take a place from someone who can concentrate longer than me) and yet I can see it - so thank for posting this link!
  2. Nielk

    Nielk

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    I think that anyone can use this link to listen and see the webcam By the way, it is fascinating so far. Patients are speaking about their experiences.
    snowathlete likes this.
  3. Nielk

    Nielk

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    I like the format where it's interactive. Questions are open for the member of the panel and/or all attendees.
    WillowJ, snowathlete and Sasha like this.
  4. Sasha

    Sasha Fine, thank you

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    Dunno if it's just you and me, Nielk! I just created a thread with a title saying the meeting was now live-streaming and a link to this thread to send people over here.

    Here's the agenda again:

    http://www.fda.gov/downloads/Drugs/NewsEvents/UCM344665.pdf

    We're coming up to where patients will be saying what they think of available treatments, which will be interesting. Bob Miller already spoke from the floor so maybe he'll talk about Ampligen.
    snowathlete likes this.
  5. Sasha

    Sasha Fine, thank you

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    I also heard Dr Joan Grobstein (if I've got her name right - she wrote a storming piece I read a while back) and Jennie Spotila.
    snowathlete likes this.
  6. Nielk

    Nielk

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    Mary Schweitzer speaking now.
  7. Sasha

    Sasha Fine, thank you

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    I heard her - what an awful story.
    Valentijn and snowathlete like this.
  8. Sasha

    Sasha Fine, thank you

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    I didn't catch the name of the speaker after Mary but she was great.
    Nielk likes this.
  9. Nielk

    Nielk

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    Talking about general types of current treatments available today. This is an interactive discussion.
  10. Nielk

    Nielk

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    Apparently Dr. Peterson is there.
  11. Nielk

    Nielk

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    I hope more people are listening to this because I find it very interesting and informative. Btw, I'm very impressed by the respectful way this FDA session is being led.
  12. Nielk

    Nielk

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    Amanda Simpson
    Sasha likes this.
  13. Sasha

    Sasha Fine, thank you

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    Yes indeed - and sensitively - several of the speakers have become distressed by what they're having to recount and it's being gently handled.
    snowathlete likes this.
  14. Sasha

    Sasha Fine, thank you

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    Open public comment session now - final session of the day.
  15. Nielk

    Nielk

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  16. Sasha

    Sasha Fine, thank you

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    Interesting - speakers now will include Judy Mikovitz, Dr Enlander, Courtney Alexander (Miller), Drs Lapp, Baraniuk, Peterson, Grobstein...

    Edit: We crossed but that screenshot is better!
    Nielk likes this.
  17. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Did Judy speak? I had to leave the room for a minute. If so, what did she say?

    Thanks,
    Sushi
  18. Nielk

    Nielk

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    Yes she spoke. Something about ME/CFS like MS and Lupus all have immune issues. Also, Rituximab has 30% response.
  19. Sasha

    Sasha Fine, thank you

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    I liked the guy who wanted our spit! :)

    I thought Dr Lempert made a good point - that Ampligen has been shown to be effective against HHV-6 (?) and that, rather than being assessed by the FDA for its efficacy against ME it should be being assessed as an anti-viral, in which case it could be used for those PWME who have high viral titres. He said that Mary Schweitzer (I think) went from being HHV-6A+ to HHV-6- three times on Ampligen (she had three courses of Ampligen).

    At least I think that's what he said! It was all happening so fast in that session that it was leaking out of my memory as fast as it was going in but there were some excellent contributions there.

    Can we see tomorrow's live streaming even if we haven't registered, like we could today's?
    snowathlete likes this.
  20. waiting

    waiting Senior Member

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    I'm assuming the webcast is being recorded and will be available later? If so, does anyone have the link for that? I caught some of today, missed most....
    Thanks!

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