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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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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. Nielk

    Nielk

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  2. gracenote

    gracenote All shall be well . . .

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    The webcast will begin shortly. If you tune in now, you will hear music and see people setting up.
     
    rosie26, Sing, golden and 1 other person like this.
  3. Valentijn

    Valentijn Activity Level: 3

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    Ooer, fancy music too! I bet our upcoming ass-reaming by the IOM shall be executed with the utmost class and refinement.
     
    justinreilly likes this.
  4. Nielk

    Nielk

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    for 1 million dollars, we better get good music! They should have brought in the Philharmonic orchestra.
     
  5. Valentijn

    Valentijn Activity Level: 3

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    ... I like how Rick Erdtmann (of the IOM) implies that congress has anything to do with the existence of the IOM. And I'm not sure how being funded by people who want a "solution", instead of the federal government, is supposed to be a good thing.
     
  6. Valentijn

    Valentijn Activity Level: 3

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    The resources they use can be contributed by external sources and will be listed for public viewing. But none of the committee's discussions or drafts are public.

    The committee's works will be reviewed by peer reviewers with roughly the same qualifications as the committee members. So if we get a psychobabble committee, will that mean a psychobabble group of reviewers?
     
  7. Nielk

    Nielk

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    This independent vigorous extensive review somehow let the GWI report slip through.
     
    leela, justinreilly and Valentijn like this.
  8. Valentijn

    Valentijn Activity Level: 3

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    Ellen Clayton (committe chair) got the name right at least, and refers to it as ME/CFS.
     
    taniaaust1, WillowJ, SOC and 2 others like this.
  9. Firestormm

    Firestormm Guest

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    I always have to practice pronunciation of that one myself :)
     
  10. Valentijn

    Valentijn Activity Level: 3

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    And Nancy Lee from the HHS is pretending that this IOM BS is what the CFSAC asked for.
     
    taniaaust1, leela, Sing and 1 other person like this.
  11. Firestormm

    Firestormm Guest

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    You know the way Nancy just said that it seems that HHS responded to CFSAc with IOM and that was perfectly fine... Appears it wasn't a problem for CFSAC at least.
     
  12. Firestormm

    Firestormm Guest

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    Yep. 'We' are here to help with the evidence collection process i.e to answer the question that was asked of us - and about current definition preferences...

    Interesting she broke down 'the illness' into CF, CFS, and ME...
     
    Valentijn likes this.
  13. Valentijn

    Valentijn Activity Level: 3

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    Lee is emphasizing that CF and ME should be looked at as potentially distinct entities.

    She's listing current case definitions: Fukuda, NICE, CCC, ICC. No Oxford - I think NICE is an ME definition? Or at least better than Oxford? Or are they the same?
     
  14. Firestormm

    Firestormm Guest

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    Different definitions for different conditions under the umbrella? (Nancy posed the question). I bloody hope not!
     
    aimossy likes this.
  15. Valentijn

    Valentijn Activity Level: 3

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    Lee is also inviting the IOM to rename it. She mentioned that the name "CFS" causes harm to patients.
     
    aimossy, justinreilly and Firestormm like this.
  16. Firestormm

    Firestormm Guest

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    Many people - advocates, scientists and doctors - believe Chronic Fatigue Syndrome as a name causes great harm - 'I agree' says Nancy :thumbsup:
     
    aimossy, rosie26, Kati and 4 others like this.
  17. Firestormm

    Firestormm Guest

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    He he he... you and me kid :) I think I shall refrain from commenting and let you carry on. I am off to bed soon x
     
  18. shannah

    shannah Senior Member

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    Uh oh - technical difficulties already - anyone else?
     
  19. Firestormm

    Firestormm Guest

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    Lot of gratitude from Nancy for this process and involvement of IOM expressed on behalf of CFSAC.

    Good opening talk I felt :)
     
  20. shannah

    shannah Senior Member

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    Back on!
     

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