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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. leela

    leela Slow But Hopeful

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    mindy nailed it!
     
    justinreilly likes this.
  2. lnester7

    lnester7 Seven

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    I am proud! We sound so united and have the same message.

    Is the press present?
     
    leela, Nielk and justinreilly like this.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Jeannette: "like Mindy says it's 'insanity'"; IoM not qualified; Fukuda was a disaster, destroyed so many lives; you can not produce a meaningful definition. Your definition will be destroyed. Patients will fight you to the end with lawsuits and public opinion.

    Haha. I love it!!!
     
    Valentijn and Nielk like this.
  4. leela

    leela Slow But Hopeful

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    mary dimmock is rocking it hard!
     
    justinreilly and Firestormm like this.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Mary Dimmock speaking personally about how her child's health was destroyed by climbing Mt. Washington because exercise was emphasized to him as critical after his ME/CFS diagnosis. emphasizes PEM. heterogeneity is man-made in CFS. applause. 'spectrum' idea isn't valid. You need a ouiji board to make sense out of all the studies based on all the different definitions.

    Nice!
     
    taniaaust1, Valentijn and Kati like this.
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Eileen calling for cancellation of contract, citing all the evidence of opposition- fifty expert letter, letters to congress, calls from congress, tweets, 171 advocates, etc.
     
    Valentijn likes this.
  7. Nielk

    Nielk

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    I hope everyone is paying attention to Eileen Holderman. She helped word the CFSAC recommendation that HHS claims this study is based on.
     
  8. leela

    leela Slow But Hopeful

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    eilleen calling out the BS in a big way! referring to threats etc
     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Eileen: This IoM process is fatally flawed. You are good experts, but HHS has rigged the game like they always do. CFSAC recommended a workshop to adopt CCC; it is outrageous what HHS has done with this- Eileen and others who object to govt definition plans threatened by govt; IoM has already written studies on ME that are very incorrect; we have a good definition CCC, these three processes are a waste, cancel them; start studying the disease, it's been 30 years.
     
  10. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Clayton says only staff, not committee members will talk to HHS from now on.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Anne Keith- do no harm; recommend to HHS they adopt CCC until an all-expert committee can update it.

    Good message.
     
  12. leela

    leela Slow But Hopeful

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    i like where radio-voice guy is going: just bc you can't find it, doesn't mean we're crazy
     
    Valentijn, Kati, Sing and 3 others like this.
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Joe Landson- valid points, talking about book Brain on Fire, but not related enough to project, imo.
     
  14. jspotila

    jspotila Senior Member

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    Thank you!!! I will be posting the text later today.
     
    Valentijn, Kati, leela and 1 other person like this.
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Susan Kreutzer- speaking on behalf of mecfsforums; 5,002 signatures against IoM contract! Maybe this was why mecfsforums was not invited to speak.
     
    taniaaust1, Valentijn and Nielk like this.
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Susan- experts have already said CCC should be adopted; this contract is just a waste of money.

    Good job!
     
    Valentijn likes this.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Denise- PEM and cognitive impairment important; this afternoon is not enough time for you to spend with patients and experts
     
    WillowJ and Kati like this.
  18. leela

    leela Slow But Hopeful

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    jay spero on behalf of derek enlander. go dr E!
     
    justinreilly likes this.
  19. leela

    leela Slow But Hopeful

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    darn it, the feed just died.
     
  20. Nielk

    Nielk

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    yes. mine too!
     

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