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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. Bob

    Bob

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    I noticed that as well. Unfortunately they weren't trying to be ironic; the irony was unintentional.
     
    Last edited: Jan 27, 2014
  2. alex3619

    alex3619 Senior Member

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    @Bob, it was a message we can trust them, they are rigorous authorities, and use not one but two secret panels of proven experts in the review process. Trust us, we are the secret authority.
     
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  3. Nielk

    Nielk

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    It was overkill though...perhaps in anticipation for what was to come?
     
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  4. Ember

    Ember Senior Member

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    Posted by Wildaisy: "At the IOM meeting today, January 27, 2014, Jay Spero read the following statement on behalf of Derek Enlander, M.D."
     
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  5. Ember

    Ember Senior Member

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    Posted by Wildaisy: "Here is the IOM statement from MECFSForums, sent in written form to IOM and also presented verbally to IOM by Susan Kreutzer."
     
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  6. leela

    leela Slow But Hopeful

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    My god, what a wonderful man to speak so frankly and openly.
     
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  7. leela

    leela Slow But Hopeful

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    oh, i thought it was very relevant, justin...speaking to the faulty "evidence" in their precious "evidence-based" scenario.
     
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  8. alex3619

    alex3619 Senior Member

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    What we are seeing from our experts is what we have needed all along ... them to stand up and say, enough is enough, now we will act to fix things and not rely on agencies that claim to have patient's best interests at heart.

    Though I want to know more about the "Academy of M.E. & C.F.S. Physicians".
     
  9. Ember

    Ember Senior Member

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    Posted by Wildaisy: "Charlotte Von Salis read this statement for Maryann Spurgin, ME Society of America"
     
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  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Excellent job by Dr. Enlander. Yes, it feels so good (and is absolutely necessary) that our doctors are finally speaking out more than one at a time here and there.
     
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  11. Ember

    Ember Senior Member

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    Accurate and Precise
    January 27th, 2014 Jennie Spotila
     
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  12. leela

    leela Slow But Hopeful

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    You know, I'm thinking again of susan maier's bizarre performance, and how much I wanted to throw a shoe at my screen when she remarked that oh my gawsh they've been working on this since june 2013, "We've been at this a looooooooong time!" she exclaimed.

    Yeah, that's like what *fraction* of time most of us have been ill? I found her whole demeanor to be trivializing. At least the chair took the opportunity to genuinely thank everyone for presenting, and to respectfully acknowledge how hard it was for them to be there.
    Ms Maier really got my goat.
    I might be especially biased because I am so sick of this illness remaining in the dept of women's health. Why doesn't she make herself useful with all that "up" energy and recommend to her colleagues at HHS a more appropriate departmental transfer for this neuroimmune disease that has caused the illness and death of how many men and boys?
     
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  13. Bob

    Bob

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    On a positive note, I was (unexpectedly) impressed by Nancy Lee's presentation. She gave the impression that she really did understand our perspective. And she said some really helpful things. And I thought she directed the committee in a good direction.

    Did any one else get that impression, or have I allowed myself to get carried away because it was a much better presentation than i had been expecting?
     
    Last edited: Jan 27, 2014
  14. Nielk

    Nielk

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    I feel that she was very well prepped considering her failure at the last CFSAC debacle. I was disappointed though at the very limited questioning considering that her presentation was the most relevant to the IOM study.
     
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  15. leela

    leela Slow But Hopeful

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    I missed her presentation. Glad to hear maybe she's taking a cue from the climate of increased patient/advocate scrutiny?
     
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  16. rosie26

    rosie26 Senior Member

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    I only got to see the first hour as I had an appointment I couldn't put off, but I too was impressed with Nancy Lee, she came across well. Can't wait to watch the whole meeting when video is available.
     
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  17. SOC

    SOC Senior Member

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    Thanks, all, for reporting here. :hug: I was tutoring throughout the meeting and so couldn't watch myself, so your reports were valuable to me.

    I was surprised and pleased to hear that Dr Lee seems to have finally figured out that ME/CFS is a serious illness that requires attention. I had long since given up on her after listening to her massive ignorance of the illness in CFSAC meetings.

    The idea that a nurse should be able to diagnose when GPs claim we're too difficult seemed quite strange, though. o_O So maybe the appearance that she grasps the magnitude of the illness is illusory. Still, it was heartening, even if it's only temporarily so. :D
     
    Last edited: Feb 3, 2014
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  18. JT1024

    JT1024 Senior Member

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    Too bad I can't like this more than once! I think it is hysterical!
     
  19. Kati

    Kati Patient in training

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    I was not particularily impressed by neither Dr Lee or Dr Meir, and after both presentations, I was very confused and perplexed as of what this committee was meant to do, and to be quite honest, I think some of the committee members were also confused.

    i worry when the IOM is being given a mandate to pick a definition that will suit the general practitionners- do they actually and should they assume that there won't be a medical specialty for us?

    No medical specialty will cause harm for us, and delay in research and clinical trials.
     
    Last edited: Jan 30, 2014
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  20. leela

    leela Slow But Hopeful

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    this is a really good point.
     
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