Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Petition: Stop CDC from hiring shoddy contractor for ME treatment guidelines

Discussion in 'Petitions' started by Joh, Aug 27, 2018.

  1. Joh

    Joh Inactivist

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    #MEAction:
    Full text:
    https://www.meaction.net/2018/08/26...idelines/?mc_cid=20165100b3&mc_eid=926b73a95d

    Petition:
    https://my.meaction.net/petitions/d...ty-consultation-on-new-me-guidelines-from-cdc
     
    Lisa108, Gemini, Mary and 1 other person like this.
  2. Learner1

    Learner1 Forum Support Assistant

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    If you look at what the contractor does, they look at published literature to draw their conclusions. It may not be that they are shoddy, the problem is there are no evidence based treatments in literature
     
    ebethc likes this.
  3. Tally

    Tally Senior Member

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    Yeah, there is no evidence based teatment so why did they recommend CBT and GET?

    I don't buy that. IOM had the exact same task, look at literature to draw conclusion and they said it's a physical illness and didn't recommend CBT and GET.
     
  4. Mary

    Mary Moderator

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    I just signed --
     
    Joh likes this.
  5. Learner1

    Learner1 Forum Support Assistant

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    I signed, too.

    IOM did not have the same task. The task here seems to be to evaluate evidence based treatments, of which there really are none, so this is putting the cart before the horse.

    Seems previously they looked around and used the copious literature on CBT/GET, which has been debunked.

    This task isn't ready for prime time. They should wait until more info from expert clinicians is available.
     
  6. Tally

    Tally Senior Member

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    That's a good point
     
  7. Cath

    Cath

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    Just signed.
     
    Joh likes this.
  8. hikinglo

    hikinglo

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    No matter what this contractor's history:

    CDC (govt) + Sole source + quietly hire = History repeats, Immediate Suspicion

    i.e. What conclusions is CDC quietly paying this sole contractor to reach? (with $150K of our tax dollars - we're still the cheapest, easiest-to-dupe disease on their lists.) I know 150K isn't much, but CDC knows how that we don't appreciate them trying to pull this type of deal off without being up front transparent to the ME community.

    (Just one example, this one relevant specifically to our community):

    CDC AND NIH Officials Discussed "Desirable Outcome" of Seeing A Distinct Illness "Evaporate”
    http://cfidsreport.com/News/14_Chronic_Fatigue_Syndrome_Definition_IOM_Straus.html

    Dr. Stephen E. Straus to Dr. Keiji Fukuda:

    “I predict that… the notion of a discrete form of fatiguing illness will evaporate. We would, then, be left with Chronic Fatigue that can be distinguished as Idiopathic or Secondary to an identifiable medical or psychiatric disorder. I consider this a desirable outcome.” “I commend you again on your efforts to forge an international consensus that has scientific merit and is politically acceptable.”

    For more historic examples, simply reference your copy of Osler's Web.

    (To put it more succintly: I signed☺)
     
  9. Joh

    Joh Inactivist

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  10. S-VV

    S-VV Senior Member

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    Signed. To hell with their "evaporation"
     

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