Julie Rehmeyer's 'Through the Shadowlands'
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CFSAC recommendations

Discussion in 'General ME/CFS News' started by SpecialK82, May 16, 2010.

  1. SpecialK82

    SpecialK82 Ohio, USA

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    Ohio, USA
    Hey guys,

    Hoping you can help me out because I can't think right now. I was only able to get through the morning session of the CFSAC meeting, and the five Centers of Excellence were mentioned numerous times and have been included in past CFSAC recommendations.

    I just went back and re-read the advocacy letter to Kathleen Sebelious at http://capwiz.com/cfids/home and just realized that it doesn't mention these five Centers! What the heck? The letter does state that it is listing examples of "a few of the key recommendations" so it doesn't include everything, but that is key!

    Somebody please tell me that we asked for the Centers again?? I know that they were trying to include items that would cost little to no money, but I hope we are asking according to our need as stated by Dr. Koh.

    I am freaking out right now:Retro mad:
     
  2. jspotila

    jspotila Senior Member

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    I'm away from home, which means away from my notes. I don't remember if the committee voted on that recommendation this time. Anyone else have it in their notes?
     
  3. SpecialK82

    SpecialK82 Ohio, USA

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    Thanks, I found the CFIDS Association summary of the meeting, and for some reason they did not recommend it again. This doens't make sense to me.
     
  4. justinreilly

    justinreilly Senior Member

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    That's too bad. Seems everyone agrees this is one of the top priorities. my guess would be they just forgot (or ran out of time) in the rushed one-day session.
     
  5. jspotila

    jspotila Senior Member

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    My recollection is that the members were going to review and prioritize all the past recommendations, and that the members also wanted to focus on lower cost recommendations following the advice from Assistant Secretary Koh. The Center of Excellence recommendation does appear as a part of the Campaign to End Chronic Pain in Women campaign (in the policy recommendations report). I'm sure the CFSAC won't give up on it either.
     
  6. justinreilly

    justinreilly Senior Member

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    Good to hear.
     

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