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What Should Phoenix Rising Tell the IOM Committee?

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Mark, Jan 8, 2014.

  1. Andrew

    Andrew Senior Member

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    The main problem I have with the CCC is they use the word "fatigue" when they should use the word "symptoms."
     
    Izola and Bob like this.
  2. monica

    monica

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    Just a note: In my case abnormalities were found in my spinal fluid. During a viral infection. So biological markers maybe found in spinal fluid, not only blood. Spinal fluid is not often tested (should be tested when inflammation is present).
     
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  3. Ember

    Ember Senior Member

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    From "Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome: Clinical Working Case Definition,
    Diagnostic and Treatment Protocols
    :"
     
  4. SOC

    SOC Senior Member

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    @Sparrow, thanks for your brilliant contributions. :hug:
     
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  5. Starfive

    Starfive

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    Sorry for the late input...Been having some challenging days. here is my two cents.
    The main point I wish the panel to hear is The URGENCY as in:
    "What started as an affliction of a few grew to hundreds, then thousands, and now millions. This is a disease that is spreading and it is urgent to accelerate funding for research. Believe us when we say: 'You do not want to get this disease'."
    (My numbers above could be corrected to reflect known facts from the outbreaks.)
    I saw somewhere a short video of the spread utilizing dots on a map, very compelling. My Brain cells can not produce where it was. most likely youTube. This all may already be included and I am just repeating others. All in all though I am grateful to everyone who worked so hard on this, and those who are still working, and those who will present and represent. Thanks!
     
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  6. Sparrow

    Sparrow Senior Member

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    Thank you. This means more to me than it probably should.

    It's nice to feel useful in some small way in the middle of the prison of this illness.
     
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  7. Firestormm

    Firestormm Guest

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    @Kina

    I believe there was a practice presentation yesterday? How did it go?

    And is it worth now keeping this thread open i.e. has the presentation been finalised?

    Hope it all went well. Whoever is actually delivering it - thank-you for doing so :)
     
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  8. taniaaust1

    taniaaust1

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    Did PR find someone to do it? Im curious who is going to be presenting?
     
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  9. Izola

    Izola Senior Member

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    I doubt there is a spec of sincerity by HHS. First off, they give extremely ill patients 20 some days to organize, shuffle their facts into clairity, discuss it, put it to paper and finally find enough warm and functioning bodies and minds to get on a plane and hope they're not all dead when the landing gears are enabled. Yah. It's their or our cooperation they want.

    The good part is the 34 million EYES!!! Thanks Wally.
     
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  10. Mark

    Mark Acting CEO

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    Sorry we haven't had a chance to give an update on this thread; the team that volunteered to help with the presentation have been very hard at work and they've done a great job and produced a presentation, based on my earlier summary of this thread, which Gabby (Nielk) will be presenting on Monday. We'd have liked to post the draft here for further discussion and refinement but we just ran out of time. We'll post our presentation here on Monday. I hope everyone will be happy that it represents the points made on this thread.
     
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  11. Izola

    Izola Senior Member

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    Everyone was sure given a lot of time for response. Not. This isn't an even playing field. Its' their back yard and they own it. Hope they know they don't have the advantage they think they do.
     
  12. Izola

    Izola Senior Member

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    No matter what the IoM does, besides backing out and going home, will lead us to an earlier death ealier then our already prognosticated early deaths. And the trail to our deaths will be torturious. Early Death? ' 'Hell no, we won't go.' Don't let them be "killing us softly with their lies."
     
  13. Firestormm

    Firestormm Guest

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    Thanks @Nielk :) You managed to keep that quiet ;) Good luck tomorrow. Try and get some rest beforehand x
     
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  14. Izola

    Izola Senior Member

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    HHS and IoM don't give a damn about us. They are playing the bureacratic shuffle. The only thing they are concerned about is lunch. Maybe a word or 2 might get through as they walk through the door. I'm old, almost dead. If one of the experts is looking for a severe near end-stage case, volunteer me. I need to contribute something to the world. I can be the sacrifice to the Volcano! Our experts are our salvation. We must treat them well. They sacrifised a normal life for us. All you who are coming up with ways to improve vitality, Bless you.

    Good speech, Mark. Sock it to them!
     
  15. Izola

    Izola Senior Member

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    You are an incredible person. I am honored to be your friend.
     
    Ren likes this.
  16. Firestormm

    Firestormm Guest

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    I see also from Facebook that Jen Brea (Canary in a Coal Mine) and her filmcrew will be there doing brief interviews with attendees :)
     
    Last edited: Jan 27, 2014
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  17. Mark

    Mark Acting CEO

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    A small team of volunteers have done an extraordinary job at extremely short notice, and put together a presentation for Gabby to deliver, based on the summary of members' comments that I produced earlier in this thread. Here are the materials they put together for this presentation:

    Presentation powerpoint (as PDF):
    (attached)

    Presentation text:
    https://docs.google.com/document/d/15_jjBMd4SIKenitu_vugE2wzZ2KUF3QRijow2MLacCA/edit?usp=sharing

    References:
    https://docs.google.com/document/d/1ZzUELQ0ki_hO00iGKfi4hpq9nR-hxPphBjmJPXhgY_E/edit?usp=sharing

    Huge thanks to everyone who helped with what was a very special team effort to get this done in time. It's a shame that we ran out of time to bring the presentation back to this thread for further discussion, but I hope what we have presented is representative of the views of our members as expressed on this thread.
     

    Attached Files:

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  18. shannah

    shannah Senior Member

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    Great job putting this together!

    One thing I noticed that you might want to correct is the date on the reference listing. It's noted as 27th of June (instead of January) 2014.
     
  19. taniaaust1

    taniaaust1

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    Thanks all who helped with this..
     
    Nielk likes this.
  20. Bob

    Bob

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    Nielk likes this.

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