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Announcment - CDC’s CFS Patient-centered outreach and communication activity (PCOCA) Conference Call

Discussion in 'General ME/CFS News' started by CJB, Aug 8, 2012.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Good point DB--we could make good use of a middle finger icon! Power of art!
    justinreilly likes this.
  2. Dreambirdie

    Dreambirdie work in progress

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    Yeah Sushi, I am just speechless. It's absolutely disgusting how we are being treated.
    justinreilly likes this.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I will say that having Jason speak is something reeves would not have done. But IMO that's just crumbs to mollify us.
  4. Ember

    Ember Senior Member

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    I don't expect that he'll be posed Dr. Grobstein's question: “You are a researcher. Do you think your opinions of a clinical definition are more valid than a clinician's?”
  5. Hope123

    Hope123 Senior Member

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    If anyone has a Skype account ($3/ month - cancel anytime) and dials in through that; the conversation can be recorded via any number of free Skype recorders, which can be found by Googling.
    Dolphin likes this.
  6. akrasia

    akrasia Senior Member

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    Hi Justin,

    As you probably know I have no respect for the way institutions of government have behaved towards us. But why would they care about mollifying us at this point?

    Jason has written damning critiques of both the CDC program and the Empirical definition. This is the first time the CDC has publicly acknowledged that there is intelligent, credible opinion that directly contradicts their policies. They didn't have to throw us a sop.

    My hunch, in light of the apparent movement of the FDA on ampligen and the project with the Open Medicine Institute, is that something is going on behind the scenes that is moving towards giving the disease legitimacy.

    Sometimes, I think this view is too optimistic and I am not without some doubt. Still, that's my intuition.
    Sing, SOC and Dolphin like this.
  7. Ember

    Ember Senior Member

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    The CDC may be basing their working relationship with Dr. Jason on his more recent opinions. His group (Jason et al., 2012) has tried to operationalize the ME criteria from Ramsay (1988), the London criteria (National Task Force Report on CFS/PVFS/ME, 1994), the Nightingale criteria (Hyde, 2007) and the Goudsmit et al. criteria (2009): “Our research group feels that post-exertional malaise is a cardinal feature of ME; the definition recognizes post-exertional malaise as prolonged restoration of muscle power following either mental or physical exertion” (emphasis added).”

    Dr. Jason observes, “It is important to note that PEM cannot be definitively established without the inclusion of the patients’ self-reported symptoms.” He expects to measure these using his new diagnostic: the DePaul Symptom Questionnaire (DSQ).
  8. WillowJ

    WillowJ Senior Member

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    I think there are legal implications to recording phone calls... it would have to be disclosed/consented?

    oh, I think I figured it out. If one party (including you) consents, that's legal federally, and in Georgia, according to this website:

    http://www.citmedialaw.org/legal-guide/recording-phone-calls-and-conversations
    http://www.citmedialaw.org/legal-guide/georgia-recording-law
  9. Dolphin

    Dolphin Senior Member

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    Although (not speaking legally) I think there is quite a bit of difference between a call that is planned to be open to a reasonably sized group of relatively random people that is recorded, and many other situations.
    WillowJ likes this.
  10. Ember

    Ember Senior Member

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    No recording, 24 hours' notice, uninformed CDC employees, 100 lines...what's going on??!!
  11. Sing

    Sing Senior Member

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    I was impressed with this call, the amount of information included as well as the tone. I felt encouraged by the respect Dr. Unger seems to have for Dr. Jason, whose work focussing on clinical and research definitions to bring them into accuracy as well as uniformity, is so crucial. I felt encouraged by both her humbleness and Dr.Jason's positive manner.
    Dolphin likes this.
  12. Ember

    Ember Senior Member

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    Thanks, Sing. I'm glad that you were able to listen and that you felt good about the call. But you're one of the few to have enjoyed Dr. Unger's “patient-centered outreach and communication activity.” Why must patients report now on this communication from memory?

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