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new blog from Jeannette, HHS and the IOM Saga, Jan 2 2014

Discussion in 'Institute of Medicine (IOM) Government Contract' started by shrewsbury, Jan 2, 2014.

  1. shrewsbury

    shrewsbury member

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  2. Nielk

    Nielk

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    Thank you, Jeanette for walking us through this whole process and pointing out all it's inadequacies/fallacies.

    I wanted to point out this section:

    I was pretty disturbed myself when I heard that the IOM is looking for input from the patient community as to the "scope of the study"????

    This whole affair seems to me as if an exchange in the back of a dark alley. I am imagining an HHS representative and an IOM representative wearing dark glasses and grey raincoats meeting up there. The HHS'er shoves over a metal suitcase full of one million dollars in cash. The IOM'er asks 'what is this for, exactly?'. The HHS'er hushes him and says: "you'll figure it out later. Just take these pesty CFS'ers out of our hair. Make it sound like we are doing them a great favor and you know....just do onto them what you did with the GWI'ers."

    Seriously, how professional is this?
    Last edited: Jan 2, 2014
    justinreilly and Izola like this.
  3. taniaaust1

    taniaaust1 Senior Member

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    wow.. what a letter and I hope people here can get throu as much as it as they can (I cant get throu it but what I did manage to read is exactly as I thought but with no proof of this as far as that contract can be terminated goes).

    A huge thanks to Jeannette for putting so many of my thoughts into words (Im glad to see that Im not the only one seeing red flag after red flag) and doing this for everyone.

    I hope someone can put together a thing of the highlights things in that letter (maybe a list of red flags keeping each point short) so those who cant read it can be advised of some of the important facts that they may not be thinking about now.

    or maybe someone can break that letter down so it can be put onto different pages? instead of one big letter, so people can stop and came back to where they were at later when reading it. Im disappointed I cant get throu the whole lot and will not be able to come back and find where I was at again.
    ...................

    I really like that idea.. great thinking. Any money from the terminated contract SHOULD go towards fixing the GWI report by OMI. I'd gladly donate our OMI money to do that!!
    .................................

    Umm are they seriously going to investigate their own dept properly? (I dont hold much hope on that). Is there a higher up people or dept or org or something who can investigate the HHS and what has happened here? What is above the HHS?
    Izola likes this.
  4. taniaaust1

    taniaaust1 Senior Member

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    I think using that info that Jeannette gives in her link.. we could use the ridiculous of what is going on now to gain public support (so what is happening could end up being a good thing if we can use it to get general public attention on our plight and on ME/CFS).

    I suggest if anyone is up to it to do a news article for www.care2.com on this whole situation (in a way in which non ME/CFS people would see the unrightness of things) and then also do a petition there (to send somewhere). I think petitioning on this matter should be continuous.
    Izola likes this.
  5. Izola

    Izola Senior Member

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    I'm so pleased you all have laid this all on the table. The first issue really has been concerning me. I like many, have a leaky brain. I don't remember whether its been stated point-blank any where in the IOM Forums that CFS and ME are different. Also, now I can better understand the rest,
  6. Izola

    Izola Senior Member

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    This came to mind straight from 1965 Washington D,C. U.S. Government Accountability Office, the GAO. Non-partisan--as much as can be in DC.
  7. taniaaust1

    taniaaust1 Senior Member

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    OMG.. I dont even know what that was supposed to say, my own past post isnt even making any sense to myself. Obviously I've screwed up words in it or something. Ive havent a lot of trouble of late with leaving out words or putting in completely wrong words which can change what my posts are supposed to say.

    sorry, ignore quoted part above of that post.

    If peoples ever see me saying anything that they dont think I'd usually say, please let me know.
    Izola likes this.
  8. Izola

    Izola Senior Member

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    In sympathy, all I ever do these past few weeks is (months?) to say or do the wrong thing. You, on the other hand, are so articulate. Take care. Izola
    taniaaust1 likes this.

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