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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
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Live webcast IoM meeting Jan. 27th 1:pm starting

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 27, 2014.

  1. alex3619

    alex3619 Senior Member

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    Oh look, there was a technical failure in the middle of the proxy comment from Dr Enlander. One of the most damning comments, and from a leading ME doctor. Oh, what a coincidence.
  2. Firestormm

    Firestormm Guest

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    Mine as well. Have they put enough cents in the slot?! :)
    justinreilly likes this.
  3. JT1024

    JT1024 Senior Member

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    I lost the webcast.....
  4. leela

    leela Slow But Hopeful

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    it's too bad there's not a chat function--they may not have a way of knowing the feed is dead
  5. JT1024

    JT1024 Senior Member

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    Not a coincidence IMHO
    justinreilly likes this.
  6. Firestormm

    Firestormm Guest

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    I think they spent the $1million already :)

    Back now!!
  7. leela

    leela Slow But Hopeful

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    bummer, i wanted to hear what enlander had to say to them.
    justinreilly and Nielk like this.
  8. alex3619

    alex3619 Senior Member

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    You know they don't have any money for CFS, not even a penny. Oh, except to pay the IOM.
    taniaaust1, Valentijn, Sing and 2 others like this.
  9. leela

    leela Slow But Hopeful

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    "treatment helps patients", emphasises joan grobstein, as the feed goes dead again...
    justinreilly, Iquitos and Nielk like this.
  10. alex3619

    alex3619 Senior Member

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    The best thing they can do is resign, I was wondering if someone was going to say that, and they did in the final comment.
    Liz Willow, Valentijn, leela and 3 others like this.
  11. Firestormm

    Firestormm Guest

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  12. alex3619

    alex3619 Senior Member

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    If a written submission was made then it should, according to the IOM, be publicly available at some point.
    aimossy likes this.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Joan Grobstein on behalf of Leela was great! Thank you to both of you! Great message and good that it came from an MD!

    Nice approach- just adopt CCC as the experts demand and then spend your time identifying the research gaps and produce a research plan.

    I like this!!- it gives them something to do after adopting CCC! They might think just adopting the CCC and doing nothing else would not be ok.

    "HHS asked the wrong questions, but you can give them the right answers!"

    I love this!!
    Izola, taniaaust1, Iquitos and 6 others like this.
  14. leela

    leela Slow But Hopeful

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    yeah!
    justinreilly likes this.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Charlotte von Salis- Your job is already done: CCC and ICC. "that's right, it's based on science, not politics!"

    Now here was a fireworks finale: You are in a unique position to hand out these pamphlets!!

    She reduced their highest and best use to being pamphleteers! Yes!!! rofl
  16. leela

    leela Slow But Hopeful

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    Well, at least the people in the room got to hear it. They're the ones that need to.
    Valentijn, justinreilly and Nielk like this.
  17. Soundthealarm21

    Soundthealarm21 Senior Member

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    I enjoyed that one.
    Izola, JT1024 and justinreilly like this.
  18. leela

    leela Slow But Hopeful

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    "Now here was a fireworks finale: You are in a unique position to hand out these pamphlets!!"

    Let's hope they get right on that! A million dollars could buy them some serious PR for dissemination!
    Liz Willow, Iquitos and justinreilly like this.
  19. Sing

    Sing Senior Member

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    Thanks to all who travelled to this meeting and made our pitch, each with your own voice! Let it not be forgotten that the "patients" in the insane asylums known as Libya, Egypt and other abusively ruled states gathered forces and changed their regimes through social media and activism, and this will continue to be an extraordinarily powerful means for government change of the future. (I know it is not easy.) IOM has heard our message. Now what it will take is their courage and honesty. If they fail and produce solely a politically driven, compromised product, their work will be met with scrutiny, publicity and ever more action until we finally have a clinical definition and research program which suits our illness.

    And speaking of "suits", I can't resist the metaphor of clothes. All the old, government-produced definitions are like ill-fitting, hand-me-down clothes, a grab bag at the church rummage sale for the indigent of our town. Yet all we are asking for are clothes which actually fit. The design has already been made, it just needs to go into full production mode.

    Hey this is a funny idea for a future demonstration. We could wear very ill fitting clothing to "model" the un"suit"ability of our definitions.
    Last edited: Jan 27, 2014
  20. alex3619

    alex3619 Senior Member

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    Unfortunately the IOM panel has limited options, being bound by contract. Some of the ideas presented are good, but they can't happen. What can happen though, if the panel experts get railroaded by the process, is they can resign or refuse to endorse the final report, at least I think they can .. having the contract out of the public view makes it difficult to determine what the situation really is.

    If the contract is cancelled though the money will not go to CFS or ME research, it will be absorbed back into HHS funds I think.

    Am I the only one who chuckled several times when we were repeatedly assured the IOM report will be very rigorously be reviewed? Oh, like the shoddy GWI report they released recently?

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