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20/21 June 2018 | Next CFSAC meeting (webinar)

Discussion in 'General ME/CFS News' started by Sasha, Feb 25, 2018.

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    Code:
    https://twitter.com/TomKindlon/status/967444649790058496
     
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  2. Sasha

    Sasha Senior Member (Voting Rights)

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    The agenda has been posted: https://www.hhs.gov/ash/advisory-committees/cfsac/meetings/2018-06-20/index.html

    And it includes sessions for public comments on both days. This page gives details on how to submit them:

    A one hour of public comments via telephone will be scheduled for the first and second day of the webinar. Individuals will have five minutes to present their comments. Priority will be given to individuals who have not provided public comments within the previous year. We are unable to place international calls for public comments.

    To request a time slot for public comments, please send an email to cfsac@hhs.gov by Wednesday, June 13, 2018. The email should contain the speaker's name and the telephone number that will be used for public comments.

    Individuals who would like to provide written testimony to Committee members should submit a copy of their testimony prior to the meeting. It is preferred, but not required, that the submitted testimony be prepared in digital format and typed using a 12-pitch font. Copies of the written testimony must not exceed 5 single-space pages, and it is preferred, but not required that the document be prepared in the MS Word format. Please note that PDF files, handwritten notes, charts, and photographs cannot be accepted. Materials submitted should not include sensitive personal information, such as social security number, birthdates, driver's license number, passport number, financial account number, or a credit or debit card number. If you wish to remain anonymous, you must specify this in the document.

    The Committee welcomes input on any topic related to ME/CFS.​
     
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  3. Webdog

    Webdog Senior Member (Voting Rights)

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  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    Might be good to get some informed comments in there.
     
  5. Sasha

    Sasha Senior Member (Voting Rights)

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    A bump for this, which starts at 9am East Coast Time (2pm UK time, I think).
     
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  6. Webdog

    Webdog Senior Member (Voting Rights)

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    Lucinda Bateman talking now. Her Medical Education Workgroup committee recommends establishing an ME/CFS "Project ECHO" to deliver medical education to doctors anywhere through a tele-mentoring program. Cost would be $100k-$200k annually. Sounds like this will be voted on later today.

    echo.png

    Edit: After much discussion and confusion, the ECHO issue was shelved until tomorrow.
     
    Last edited: Jun 20, 2018
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  7. Webdog

    Webdog Senior Member (Voting Rights)

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    ICD code recommendations 2 and 3 were voted on and approved. The federal agencies will have to respond.
    icd.png

    (My healthcare provider doesn't currently allow a G93.3 diagnosis, only R53.82.)
     
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  8. Joh

    Joh Senior Member (Voting Rights)

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    Very annoying, was looking forward to watching CFSAC via Livestream and it was no problem the previous times. This time I had to register with name, download a program and then there were only slides and no sound. Tried for quite a while to get sound. Checked on Twitter and read from other pwME that this time there's no sound unless you call in by phone separately. Sound on the phone and slides on the computer – this is ridiculous. Phone number didn't work for me (because I'm not in US?). Wanted to write about the CFSAC meeting for a German charity but now not possible.
     
    Last edited: Jun 22, 2018
  9. Sasha

    Sasha Senior Member (Voting Rights)

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    I got as far as the silent slides and didn't have a clue what to do next, so gave up.

    Incredibly piss-poor provision for brain-fogged patients.
     
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  10. Webdog

    Webdog Senior Member (Voting Rights)

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    I too was shocked, after going through the installation procedure, to have to call in separately from the slideshow.

    My computer balked during the slideshow software install, because their security certificate expired last year. Had to manually accept the expired certificate.

    Once installed, the slideshow was fine, but my phone call got dropped about once an hour and had to redial/reenter code.

    The conference "Privacy Policy" you must sign is rather bad.

    Edit: Trying to get back on and the slideshow not working. Audio only.

    Edit: The slideshow/WebEx link is incorrect on the website for the second day.

    The correct URL is:
    https://www.mymeetings.com/nc/join.php?i=PWXW7447583&p=5959754&t=c
     
    Last edited: Jun 21, 2018
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  11. Joh

    Joh Senior Member (Voting Rights)

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  12. Sunshine3

    Sunshine3 Senior Member (Voting Rights)

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    I just have to say I love ME Action's sense of urgency so much!
     
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  13. Webdog

    Webdog Senior Member (Voting Rights)

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    The public comment session had some very emotional moments. Hopefully some of it made an impact.
     
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  14. Skycloud

    Skycloud Senior Member (Voting Rights)

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    I'm interested to know what happened but have been concentrating on the Westminster Hall Debate. How did it go?
    Will a transcript, audio or video of the proceedings be available at some point ?
     
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  15. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Me too
     
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  16. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    The one in December last year was put up on Youtube so hopefully this one will be too in the not too distant future.
     
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  17. Webdog

    Webdog Senior Member (Voting Rights)

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  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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    I was able to skype in from outside US to get sound and then see slides on website slideshow. Number changed the second day for some reason - think I was too busy with U.K. debate to highlight.
     
    Last edited: Jun 22, 2018
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  19. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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