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CFSAC 17/18 May 2016 Webinar Meeting

Discussion in 'Action Alerts and Advocacy' started by Denise, Jul 19, 2016.

  1. Denise

    Denise Senior Member

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  2. Nielk

    Nielk

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    As far as audio links, although CFSAC promised to post these - no audio links have been posted from any audio only meetings.
     
  3. Denise

    Denise Senior Member

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    @Nielk - I seem to recall something about that (though I may have been "dreaming") - do you have a reference that we can use when asking CFSAC for audio?
     
  4. Nielk

    Nielk

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    It will be hard to find a reference because it was stated orally and - we don't have the recording. An advocate had called Dr. Lee's office following the CFSAC meeting asking when we can expect the audio tape to be posted and was told in a couple of weeks.
     
  5. Denise

    Denise Senior Member

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    @Nielk - Is that advocate able (and willing) to make a follow-up call to Dr. Lee's office?
     
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  6. Nielk

    Nielk

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    I emailed them asking about the recording. This was the reply I received.

    "Good afternoon Ms. Klein. We are hoping to have it uploaded on the CFSAC website soon. In the meantime the minutes from the meeting are already posted. Thank you for your interest in CFSAC."
     
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  7. Denise

    Denise Senior Member

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    Public comment (probably only that which was submitted by the deadline in the Federal Register) from May 2016 CFSAC meeting

    Chronic Fatigue Syndrome Advisory Committee (CFSAC) May 17-18, 2016 Presentations
    May 17-18, 2016 CFSAC Webinar
    Hubert Humphrey Building
    200 Independence Avenue, S.W.
    Washington, D.C. 20201

    Public Testimony
    May 17-18, 2016

    Content created by Assistant Secretary for Health (ASH) - Chronic Fatigue Syndrome Advisory Committee
    Content last reviewed on August 3, 2016

    http://www.hhs.gov/advcomcfs/meetings/presentations/201605.html
     
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  8. Nielk

    Nielk

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    i emailed them again asking for the status of the audio tape. I also asked them for previous webinar meetings' audio recordings.
    It doesn't look promising. This was the reply I received.

     
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  9. Denise

    Denise Senior Member

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    @Nielk - thank you for this info....
    I wonder if part of the problem with CFSAC meetings and minutes/ transcripts/audio/video, etc has to do with changing contractors...
    Maybe I am mis-remembering, but I don't remember as many delays, problems, etc when the work was done by HHS employees...
    Please correct me if I am mistaken.
     
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  10. Tom Kindlon

    Tom Kindlon Senior Member

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  11. Tom Kindlon

    Tom Kindlon Senior Member

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  12. Wally

    Wally Senior Member

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    @Tom Kindlon. Can you provide any additional information on how you determined that the audio recordings for these meetings were now available on the HHS OWH CFSAC Meeting Website page? See, http://www.hhs.gov/advcomcfs/meetings/index.html

    I note that the following information appears on the bottom of this web page:
    "Content created by Assistant Secretary for Health (ASH) - Chronic Fatigue Syndrome Advisory Committee
    Content last reviewed on September 2, 2016"
     
  13. Tom Kindlon

    Tom Kindlon Senior Member

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    Years back, I signed up to notifications of changes to this page so got this email:
     
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  14. Wally

    Wally Senior Member

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    @Tom Kindlon. Thank you for sharing this information.

    I had become weary of continually looking for this updated info. on the CFSAC web page, after being told by the OWH (via Dr. Nancy Lee) that they would not use the CFSAC listserv to notify the public when an update had been made to this page. I had also been told, by Dr. Nancy Lee, that this particular update would be posted within 2 to 3 weeks after the date of the meeting.'

    However, it became rather comical when the "2 to 3 week" window to update the page turned into months of being told that the update would be coming in just another "2 to 3 weeks". When pointing out the burden this had placed on the public to obtain this update, I was told that Dr. Lee would review this policy and I would be contacted when the update happened. However, it does not appear that this has happened because the web page has been updated and I did not receive any communication from the HHS that this update had occurred.
    See, http://www.hhs.gov/advcomcfs/meetings/index.html

    I was also informed by Dr. Lee that all prior public CFSAC meeting recordings were available on the CFSAC meeting page. I informed her that this statement was incorrect and no recordings were posted on this web page. I was told that her Office would investigate this further and I would be contacted when this investigation was complete. Since, I have not been contacted by her Office and the recordings now appear on this web page, perhaps the "investigation" is now complete.

    It had been reported on a recent thread on this Forum that Dr. Lee would be retiring from the government.
    See, http://forums.phoenixrising.me/index.php?threads/nancy-lee-to-leave-cfsac-aug-2016.46298/
    Perhaps Dr. Lee did some housekeeping before her retirement or another federal official has begun to address some of these outstanding issues. I will follow-up to see if the CFSAC list serv can be utilized in the future to inform the public when updates/changes are made to this web page.

    I will also ask the HHS, via Secretary's Burwell's Office, if a possible solution to the inconsistent use of public communication by the HHS could be remedied by clear guidelines and the development of a master e-mail list serv. This master e-mail list serv could be required to be used by all the Agencies/Offices (under the HHS umbrella) for any announcements, updates and/or changes that relate to the topics of ME, ME/CFS, CFS or SEID. However I realize that such a technological feat of efficiency and open communication with the public may not be possible for this illness.
     
    Last edited: Sep 3, 2016
  15. Denise

    Denise Senior Member

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    @Nielk - thought you might want to know these are available.
     
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