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In anticipation of tomorrow’s “roll out’ of the IOM ME/CFS report

Discussion in 'Action Alerts and Advocacy' started by Nielk, Feb 9, 2015.

  1. Nielk

    Nielk

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    A LARGE GROUP OF STAKEHOLDERS CONTINUE TO FIGHT AND WILL RESIST THE IOM REDEFINITION OF THE DISEASE FOR THE FOLLOWING REASONS:


    · We do not want government defining or naming our disease.

    · The IOM was contracted and is being paid by HHS – it is not an independent body.

    · HHS ignored and defied the majority of experts when they contracted the IOM.

    · Our experts have spoken: Adopt the CCC now and stop the IOM.

    · Our CFSAC recommended to convene stakeholders to work on criteria starting with CCC.

    · It is a waste of one million tax payer’s dollars.

    · At least half of the panel are non-experts.

    · Some are in the behavior sciences.

    · The IOM previously described ME/CFS as a somatoform illness.

    · There was no transparency evidenced by Jeannette Burmeister’s suit for FOIA documents.

    · The VA/IOM report on GWI recommended CBT and GET for GWI and ME/CFS patients.

    · The IOM’s criteria is being rolled out without testing.


    KEEP IN MIND: IF HHS WAS GENUINELY CONCERNED ABOUT CREATING GOOD CRITERIA FOR US, THEY WOULD HAVE LISTENED TO ALL OF OUR EXPERTS, CFSAC, ADVOCATES AND PATIENTS. THEY WOULD HAVE ADOPTED THE CCC AND WORKED ON IMPROVING IT WHEN APPROPRIATE INFORMATION BECOMES AVAILABLE.


    We have been neglected and abused due broad criteria for so many years. Do not settle for anything less than the CCC. Do not settle for what they “roll out” – just because it has the stamp of approval from the government on it. Don’t accept crumbs!
     
    ahimsa, Iquitos, beaker and 11 others like this.
  2. Snowdrop

    Snowdrop Rebel without a biscuit

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    Yes, hopefulness and a conciliatory attitude are both fine qualities and can be useful in many situations.
    This is not one of them.
    I'm sure the IOM spent a great deal of their time focussed on how best to deliver their message in a way that they hope will pacify us and allay our concerns while still sticking it to us. Expect wording that says one thing while the overall meaning is something altogether different.

    A reasonable outcome for patient's (a silk purse) will not come out of this political sow's ear.
     

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