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CFSAC meeting Oct 3-4, 2012

Discussion in 'General ME/CFS News' started by Andrew, Sep 11, 2012.

  1. SpecialK82

    SpecialK82 Senior Member

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    Couldn't agree more Sing - to say that this is unfair and tragic is an understatement!
  2. Ember

    Ember Senior Member

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    I only wish that we patients could agree with our own expert doctors and scientists. So far, our advocates have contradicted them.

    In the Joint Request for Action that was sent to Secretary Sebelius, Assistant Secretary Koh, and Deputy Assistant Secretary Lee in June, the ME/CFS Community wrote that “many experienced clinicians and researchers recognize the equivalency or close similarity of ME and CFS based on the growth in scientific understanding and have adopted the term ME/CFS.” They wrote too of “CFS, known as myalgic encephalomyelitis or ME/CFS,” and they argued before the NCHS last September that “when properly defined, CFS is the same as ME.”

    The ICC panel of experts disagrees. They contend, “Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric.” The panel recommends that “patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification.”

    Dr. Unger noted almost a year ago that the “opinions of advocates, clinicians and researchers remain divided about whether CFS and ME are the same or different entities.” She added, “We are following the discussions with interest and would consider any consensus that is reached by patient groups and the scientific community going forward.”

    We keep hearing that our disputes impede progress.
  3. Dolphin

    Dolphin Senior Member

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    I wish people like Byron Hyde would publish in peer-reviewed journals more. Doctors can make all sorts of claims but without getting published, with the rigors involved, the claims are not generally seen as good evidence.

    The ICC document largely refers to ME/CFS or CFS research so not sure how good it is as a means to claim ME is different from CFS.
  4. Andrew

    Andrew Senior Member

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    I'm posting a copy of what I said, including the resources I offered to supply to the CFSAC. But before I post this, I want to thank everyone here who offered me positive feedback on my presentation. I was so upset at the time I presented it I wasn't sure what kind of job I did.

    Here's a copy of my presentation. And after it I'm adding links to the sources I said I would provide.


    Next, here are the sources to which I made reference.
    Bob, SOC, Nielk and 3 others like this.
  5. Nielk

    Nielk

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    Thank you Andrew.

    I know how much effort this takes. All the preparation, trying to fit it all in within the allotted time and then the delivery. I did it a year ago and it took so much out of me.

    Thank you for doing this.:thumbsup:
  6. Andrew

    Andrew Senior Member

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    This fall’s CFSAC Meeting is now available on the HHS YouTube channel. The event has been broken into various sections, listed below with the associated links. Once pending internal processes are complete, the video will be posted on the CFSAC website.

    Welcome and Opening Remarks (CFSAC Fall 2012)


    Public Comment on Day One- AM (CFSAC Fall 2012)


    Agency Updates from HRSA, NIH, and FDA (CFSAC Fall 2012)


    Biomarkers – An overview & Future Look (CFSAC Fall 2012)


    FDA & Drug Development (CFSAC Fall 2012)


    Public Comment on Day One – PM (CFSAC Fall 2012)
    http://www.youtube.com/watch?v=_fIEeQBdvxM

    Committee Discussion & Plans for Day Two (CFSAC Fall 2012)
    http://www.youtube.com/watch?v=Fs1A6KhHInU

    Opening Remarks & Agency Updates (CFSAC Fall 2012)
    http://www.youtube.com/watch?v=PWBmqd8LDhg

    Social Security Administration (CFSAC Fall 2012)
    http://www.youtube.com/watch?v=af_r5LiIjXQ

    Public Comment on Day Two (CFSAC Fall 2012)
    http://www.youtube.com/watch?v=qGb0U6EaI4o

    ME/CFS Organizations (CFSAC Fall 2012)
    http://www.youtube.com/watch?v=MTHpny0u-XU

    A Path Forward (CFSAC Fall 2012)
    http://www.youtube.com/watch?v=NFaXiiSdZqI

    Finalize Recommendations (CFSAC Fall 2012)
    http://www.youtube.com/watch?v=CO9bO-udcY0
  7. Bob

    Bob

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    Here's Andrew's list without any embedded videos, in case helpful:


    This fall’s CFSAC Meeting is now available on the HHS YouTube channel. The event has been broken into various sections, listed below with the associated links. Once pending internal processes are complete, the video will be posted on the CFSAC website.

    Welcome and Opening Remarks (CFSAC Fall 2012)
    www.youtube.com/watch?v=4Zl2RX4URuI

    Public Comment on Day One- AM (CFSAC Fall 2012)
    www.youtube.com/watch?v=oIGpfvfFZ1w

    Agency Updates from HRSA, NIH, and FDA (CFSAC Fall 2012)
    www.youtube.com/watch?v=buDxhejdg90

    Biomarkers – An overview & Future Look (CFSAC Fall 2012)
    www.youtube.com/watch?v=01hZYq4GMtI

    FDA & Drug Development (CFSAC Fall 2012)
    www.youtube.com/watch?v=IGASSh7YV3s

    Public Comment on Day One – PM (CFSAC Fall 2012)
    www.youtube.com/watch?v=_fIEeQBdvxM

    Committee Discussion & Plans for Day Two (CFSAC Fall 2012)
    www.youtube.com/watch?v=Fs1A6KhHInU

    Opening Remarks & Agency Updates (CFSAC Fall 2012)
    www.youtube.com/watch?v=PWBmqd8LDhg

    Social Security Administration (CFSAC Fall 2012)
    www.youtube.com/watch?v=af_r5LiIjXQ

    Public Comment on Day Two (CFSAC Fall 2012)
    www.youtube.com/watch?v=qGb0U6EaI4o

    ME/CFS Organizations (CFSAC Fall 2012)
    www.youtube.com/watch?v=MTHpny0u-XU

    A Path Forward (CFSAC Fall 2012)
    www.youtube.com/watch?v=NFaXiiSdZqI

    Finalize Recommendations (CFSAC Fall 2012)
    www.youtube.com/watch?v=CO9bO-udcY0
  8. Bob

    Bob

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    Hi Andrew, I haven't seen your testimony, but your statement is spot on, and really demonstrates that the CDC are behaving ridiculously. Thanks very much for doing that. It's really a great statement, and crystallises the essential issues so succinctly.

    :thumbsup:
  9. lnester7

    lnester7 Seven

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    Can we do like a advertisement like in youtube and diffuse it in our personal media on CDC attitude for CFS? If I would know how to produce I would do something tasteful ( 2min or so) asking for answers, put pressure.
  10. Andrew

    Andrew Senior Member

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    I wonder what issues would be involved if someone took out an ad in the wall street journal discrediting the CDC.

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