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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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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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