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CDC stakeholder call 10 May 2018 3-4 pm (ET)

Discussion in 'Advocacy Action Alerts' started by Denise, Apr 30, 2018.

  1. Denise

    Denise Senior Member (Voting Rights)

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    Hi,
    I don't think I have seen this posted elsewhere but please remove (or let me know how to do so) if appropriate:

    May 10, 2018
    3:00 pm -
    4:00 pm Eastern Time

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

    participants can either call in using the following information:

    Call number: 1-888-790-1949
    Participant Code: 2242976​

    or join the meeting using the new webinar format by clicking the link, or copying and pasting it into your browser
    https://adobeconnect.cdc.gov/mefcfs/


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



    Meeting Agenda

    3:00pm Welcome and SEC Call Overview

    3:05pm Updates from CDC – Elizabeth Unger, Ph.D., M.D.
    Branch Chief, Chronic Viral Diseases Branch
    Centers for Disease Control and Prevention​

    3:15pm “ME/CFS: The Invisible Disease and its Educational Implications for Young People”

    Faith Newton, Ed.D.
    Professor of Education
    Coordinator of Middle Level Education
    Delaware State University​

    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.
     
    Last edited by a moderator: May 5, 2018
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  2. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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  3. Denise

    Denise Senior Member (Voting Rights)

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    If you are on the CDC email list but did not receive the notice pasted above, I think it'd be good to let CDC know that.
    MECFSSEC@cdc.gov
    (use this same email to ask to submit questions for this call and/or to be added to their email list)
     
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  4. Webdog

    Webdog Senior Member (Voting Rights)

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    Bump. Less than 20 hours away.

    May 10, 2018
    3:00 pm -
    4:00 pm Eastern Time
     
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  5. Webdog

    Webdog Senior Member (Voting Rights)

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    Note that the CDC "Information for Healthcare Providers" has been "Coming Soon" on the CDC website for almost a year. Apparently, the CDC and I have fundamentally different understandings about the meaning of "Coming Soon".

    I think of "soon" as defined in the dictionary as "shortly" or "imminently".

    However, over the past months, I've grown convinced that the CDC thinks of "coming soon" in more of a religious way. Similar to how "Jesus is coming soon", so also ME/CFS "New content is coming soon". For the CDC faithful, it's not long to wait. ;)
     
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  6. Webdog

    Webdog Senior Member (Voting Rights)

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    Last edited: May 10, 2018
  7. Inara

    Inara Senior Member (Voting Rights)

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    Would someone be willing (and have the energy) to summarize the Webinar a bit?
     
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  8. Webdog

    Webdog Senior Member (Voting Rights)

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    Unger talking about how the CDC is trying to determine the prevalence of ME/CFS via state health agencies.

    Information for Healthcare Providers "should be available this summer".

    Continuing medical education for doctors via Medscape and WebMD, based on IOM report. Bateman and Montoya participating. Should be available Nov 2018.

    Common Data Elements project will standardize ME/CFS data collection.

    FDA recognizes critical need for ME/CFS drug trials.

    That's the end of Unger's talk. I'll stop here. But the meeting is being recorded.

    (After Unger, the slideshow talk is about ME/CFS in schoolchildren, including symptom management and working with schools for accomodation)
     
    Last edited: May 10, 2018
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  9. Inara

    Inara Senior Member (Voting Rights)

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  10. Kalliope

    Kalliope Senior Member (Voting Rights)

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  11. Webdog

    Webdog Senior Member (Voting Rights)

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  12. Webdog

    Webdog Senior Member (Voting Rights)

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    In her CDC Stakeholder talk "ME/CFS: The Invisible Disease and its Educational Implications for Young People”, Faith Newton, Ed.D. mentioned that 88% of children with ME/CFS eventually recovered (if I remember correctly).

    Does anyone know where she got the 88% of children recover figure?
     
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  13. Denise

    Denise Senior Member (Voting Rights)

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    @Webdog - I suppose it's partly a question of one's definition of recovery....
    The only 3 references listed in her slides were the pediatric primer, Nijhof et al - http://pediatrics.aappublications.org/content/early/2011/04/18/peds.2010-1147, and Crawley on school absence.
    But she mentioned things that showed up in Bell's (et al) https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3940158/
    I will be interested to read the transcript when it comes out (like you, I am hoping it will, and hoping it will be posted) as there were some other things I don't think I clearly understood.
     
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  14. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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