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CDC Stakeholder Engagement Webinar 16 Sept 2019 3pm (ET)

Discussion in 'General ME/CFS News' started by Denise, Jul 25, 2019.

  1. Denise

    Denise Senior Member (Voting Rights)

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    MARK YOUR CALENDARS


    September 16, 2019

    3:00 pm - 4:00 pm Eastern Daylight Time







    CDC ME/CFS Stakeholder Engagement and Communication (SEC) Conference Call

    participants can either call in using the following information:

    Call number: 1-888-989-4409

    Participant Code: 8773805



    or join the meeting using the webinar format by clicking the link, or copying and pasting it into your browser.

    https://adobeconnect.cdc.gov/r4wnwwqqzvs0/

    If you have never attended an Adobe Connect meeting before, it is recommended that you test the connection before the call date:

    Test your connection: https://adobeconnect.cdc.gov/common/help/en/support/meeting_test.htm

    Get a quick overview: http://www.adobe.com/products/adobeconnect.html


    Meeting Agenda



    3:00pm Welcome and SEC Call Overview



    3:05pm Updates from CDC – Elizabeth Unger, PhD, MD

    Branch Chief, Chronic Viral Diseases Branch

    Centers for Disease Control and Prevention



    3:15pm “The Biology of ME/CFS: Emerging Models”

    Anthony L. Komaroff, M.D.

    Simcox-Clifford-Higby Distinguished Professor of Medicine, Harvard Medical School

    Senior Physician, Brigham and Women’s Hospital, Boston, Massachusetts



    3:45pm Questions from MECFS SEC Call Mailbox for Guest Speaker and CDC



    Disclaimer: Although the content of calls is directed to patients, caregivers, health care professionals, and other interested parties, CDC has no control over who participates on the conference call. Therefore please exercise discretion on sensitive content and material, as confidentiality during these calls cannot be guaranteed.



    Please note that questions for the Guest Speakers and CDC can be submitted only via email at MECFSSEC@cdc.gov. This mailbox cannot respond to inquiries received and is in use only for the scheduled MECFS-SEC calls. If you would like to be added to the call list, please send an email to MECFSSEC@cdc.gov.



    Contact for MECFS-SEC Conference Call:

    MECFSSEC@cdc.gov
     
  2. Denise

    Denise Senior Member (Voting Rights)

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    Reminder all questions MUST be submitted in advance. (Unlike the NIH format that allows for questions for instance arising from the speaker's talk and allows for follow-up questions/clarification.)
    MECFSSEC@cdc.gov
     
  3. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Assuming he won’t be giving a musical performance
     
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  4. Denise

    Denise Senior Member (Voting Rights)

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    I certainly hope he won't! (Even if he has a good singing voice.)
     
    Milo, Trish, Andy and 3 others like this.
  5. ahimsa

    ahimsa Senior Member (Voting Rights)

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  6. rvallee

    rvallee Senior Member (Voting Rights)

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    It seems that most ME advocates have given up on the CDC. Not much is happening there that is remotely encouraging and it looks like the expectations are so low that most don't bother following up with them.

    Nothing so far has given me reason to think otherwise. It would be worth having them be relevant but that takes so much energy and commitment while the NIH and even Congress are a better target for the little efforts that can be summoned.

    It would take healthy allies to hold them accountable. We just don't have that yet and no one wants to be confrontational for risk of completely souring whatever little input they have in the process.
     
    Yessica likes this.
  7. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Healthy allies will not be enough to make them accountable. I'm not sure what will
     
    duncan, Roy S and Yessica like this.
  8. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    For those wanting to learn more see the NIH transcript from the NIH call last month where Unger from the CDC waffled was questioned- linked in this tweet from @Simon M who provided a CDC summary. Patients such as @Wilhelmina Jenkins did a good job calling out CDC BS. Folks calling in made it crystal clear that CDC "patient engagement" was clearly one way.
     
    Last edited: Sep 20, 2019
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  9. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    okay, here are two of the best quotes from the NIH call ref: CDC/Unger
    transcript : https://www.nih.gov/research-traini...mecfs/nih-me/cfs-advocacy-call-august-19-2019

    Thank you Sandy Stone
    Thank you Liz Burlingame
    [cut-off at that point]
     
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  10. rvallee

    rvallee Senior Member (Voting Rights)

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    Cripes. That was a total disaster. Completely tone-deaf. Unger is utterly useless and provides no leadership whatsoever. No progress will be made at CDC with her at the helm of this process. The entire process is unaccountable and it's obvious that no one involves thinks this is important, they are humoring us and barely making an effort at pretending to.

    The comments were great, especially Wilhelmina. The responses were a dumpster fire. Zero patient engagement, in fact this is overt dismissal. You can almost feel the eye-rolling in the transcript.

    Worst of all, this is still improvement from the last 30 years, however tiny. Meanwhile the NIH spend $20M on musical therapy. Good grief.

    Worth copying this comment:
    The response is basically: whatever.
     
    Last edited: Sep 20, 2019
    Hutan, MEMarge, ahimsa and 6 others like this.
  11. wigglethemouse

    wigglethemouse Senior Member (Voting Rights)

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    Totally agree. The missus was livid after reading it. What stood out for her was the "message" that the CDC can't do anything about educating doctors/health providers/states, and that the patients and patient supported organisations are in a better position to do this - I believe they even mentioned Solve in this respect. Uggghhh. There is NO accountability at the CDC. $5 MILLION a year and we don't really know what they are doing with it.

    My take is there is no diagnostic test and no treatment, so their mission is to continue to sweep ME under the carpet - no-one there wants to be the one creating a panic. If the CDC tells doctors 1 million folks are affected, it's a disease with a worse QoL than MS, no diagnostic test and no treatment, it will only lead to more questions on what the government is doing about it - which they don't want.
     
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  12. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  13. Hutan

    Hutan Moderator Staff Member

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    rvallee likes this.

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