Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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NIH P2P Meeting (formerly the Evidence-based Methodology Workshop)

Discussion in 'Institute of Medicine (IOM) Government Contract' started by jspotila, Jan 6, 2014.

  1. Izola

    Izola Senior Member

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    :balloons: Ren: I almost didn't recognize you, what with all those whiskers. You're the man for the job, 007. :devil: Iz
     
    Ren likes this.
  2. Wally

    Wally Senior Member

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    My, my, my seems like things are just humming right along in Washington.

    Thirty years and now so much busy, busy work. I wonder where all of this activity is being generated from?

    Alas I can only ponder such things in my dreams because the crystal ball contract has gone into hiding and appears to not be amenable to making an appearance until Hell freezes over or pigs grow wings and fly.

    I called on Monday morning (Jan. 7th) to find out how I can stand in line to win a golden ticket for the opening Act of the IOM's theatrical production of its ME/CFS Contract with the HHS. The answer they say should be revealed by the end of the week. How many tickets will be sold to the public for this performance I asked? They are not sure yet due to logistical planning, which is still in the works for this performance.

    Wearily I sighed - does the HHS and the IOM understand that there are members of the public who do want to attend the public session of this performance and it is less than 3 weeks away from this curtain call. In addition, some of these members of the public are ill and disabled and they will be required to travel great distances to witness this performance up close and personal? Yes, the response rang out loud and clear. Come back at the end of the week when we should have the information that you are seeking.

    While Wally now sits at home confused and bewildered by these new developments, I leave you with some bits of entertainment to keep you occupied while waiting to hear when you may stand in line for the chance to receive a golden ticket. This sure seems to be to shaping up to be a great circus performance to start the New Year by those illustrious performers sequestered somewhere in the ivory towers of the HHS.

    With warmest regards,

    Wally :cool: (Your friend from California who has only just begun to engage in our little battle)



    [​IMG]


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    and for all those who wonder if we are making any impact in Washington as we have begun to use our outside voices - I believe that some of the activity we may "suddenly" be seeing could be because of the concern that things are no longer the status quo for advocacy for this illness. Too bad for some that it now appears that many sleeping dogs from around the world have been awaken (even if they can't get out of their beds).



    Go Canaries! The Fight Has Just Begun!
     
    Last edited: Jan 8, 2014
    Chris, beaker, justinreilly and 5 others like this.
  3. Izola

    Izola Senior Member

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    Ren: You are amazingly brilliant. You could use a little shave and a haircut--10 cents. :balloons::balloons::balloons::balloons::balloons::balloons::balloons:
     
  4. Izola

    Izola Senior Member

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  5. Izola

    Izola Senior Member

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    Help Nielk: I'm stuck in pink and can't get out' Pls see before Pigs Fly. Iz:(:confused::thumbdown::aghhh::redface::bang-head::nervous::jaw-drop:
     
  6. Ember

    Ember Senior Member

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    Robert Miller about an hour ago
    Posted by Wildaisy...
     
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  7. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    These canaries are morphing into little dragons. How long before those little dragons grow up and start breathing fire?

    [​IMG]
     
  8. Nielk

    Nielk

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    Queens, NY
    More on P2P - by Jennie Spotila

    http://www.occupycfs.com/2014/01/13/more-on-p2p/

     
  9. justinreilly

    justinreilly Stop the P2P! Adopt "ME" & CCC!

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    NYC (& RI)
    I don't know enough about Bob to make a judgment on him overall. I do know he has done some great things for us. However, this post of his makes me extremely uneasy. If I didn't know, I would guess that Cort wrote it. It exhibits the dangerously delusional trust in HHS that will mislead those who don't know enough. Trademark Cort. Not a good sign.

    The fact that he doesn't mention that the Panel (as opposed to the workshop committee), which will write the final report, must consist entirely of non-experts is a very troubling omission. The process is fatally flawed.
     
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  10. Ember

    Ember Senior Member

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    Ready or not, here we come...

    [​IMG]

    :nervous: or are we pacifist canaries?
     
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  11. Ren

    Ren .

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    "The government itself, which is only the mode which the people have chosen to execute their will, is equally liable to be abused and perverted before the people can act through it." (Thoreau - Civil Disobedience)
     
  12. Ember

    Ember Senior Member

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    Wildaisy has received from the NIH a snail-mail response to her FOIA request, and she has posted the documents on MECFS Forums (Reply #9). Dr. Koh's July 3 memo to the NIH Director includes this reference to the intended coordination with the IOM:
    Wildaisy will post the documents to the MECFSForums Wiki.
     
    Bob and Firestormm like this.

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