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CFSAC Webinar June 29-30 Agenda & Call-In Number

Discussion in 'General ME/CFS News' started by Gemini, Jun 28, 2017.

  1. Gemini

    Gemini Senior Member

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    June 29-30, 2017 CFSAC Meeting (Webinar)

    The dial-in Information for the upcoming CFSAC webinar meeting is:

    Call in Number 1-888-788-9429
    Participant Passcode: 4510479

    Webinar
    : https://www.mymeetings.com/nc/join.php?i=PWXW4299560&p=4510479&t=c [​IMG]

    Agenda

    Day 1
    June 29, 2017 12:00pm – 5:00pm (EST)

    12:00 p.m. Call to Order/Roll Call/Logistics
    CDR Gustavo Ceinos, MPH,Designated Federal Official,Office on Women’s Health
    12:15 p.m. Opening Remarks
    Susan M. Levine, MD and Faith Newton, Ed.D, Co-Chairs, CFSAC
    12:30 p.m. Agency Updates
    Centers for Disease Control and Prevention
    Food and Drugs Administration
    Social Security Administration

    1:30 p.m. Presentation from Liaison Organizations
    Simmaron Research Inc
    Massachusetts CFIDS/ME & FM Association
    ME Action

    2:30 p.m. Public Comments
    Public
    3:00 p.m. Report from the Pediatric Education Working Group
    Faith Newton, Ed.D
    3:45 p.m. Break (15 minutes)
    4:00 p.m. Adult/Pediatric ME/CFS Research Update
    Susan M. Levine, MD
    Faith Newton, Ed.D
    5:00 p.m. Adjourn

    Day 2

    June 30, 2017 12:00pm – 5:00pm (EST)

    12:00 p.m. Call to Order/Roll Call/Logistics
    CDR Gustavo Ceinos, MPH, Designated Federal Official, Office on Women’s Health
    12:15 p.m. Opening Remarks
    Susan M. Levine, MD and Faith Newton, Ed.D, Co-Chairs, CFSAC
    12:30 p.m. Agency Updates
    National Institutes of Health
    Health Resources & Services Administration
    Agency for Healthcare Research & Quality

    Department of Veteran Affairs
    1:30 p.m. Public Comments
    2:00 p.m. Report from the Medical Education Working Group
    Gary Kaplan, MD, Working Group Chair
    3:00 p.m. Break (15 minutes)
    3:15 p.m. Discussion Recommendation Medical Education Working Group
    CFSAC Members
    4:00 p.m. Discussion CFSAC SOP
    CDR Gustavo Ceinos, MPH
    5:00 p.m. Adjourn
     
    ballard, Hutan, Dolphin and 1 other person like this.
  2. Valentijn

    Valentijn Senior Member

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    Do they have an explanation for why the Office of Women's Health is still involved, for a biomedical condition that does not involve or require a vagina?
     
    AndyPR, halcyon, ScottTriGuy and 8 others like this.
  3. Gemini

    Gemini Senior Member

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    Bump, this begins in a few hours.
     
    Comet likes this.
  4. Sing

    Sing Senior Member

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    New England
    It is beginning.
     
    MEMum and Dolphin like this.
  5. Sing

    Sing Senior Member

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    New England
    Anyone else listening?
     
    Nielk and Dolphin like this.
  6. Mesurfer

    Mesurfer

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    PA/NJ
    Is anyone watching this? I'm listening on the phone but would like to watch it.
     
  7. Nielk

    Nielk

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    Mesurfer likes this.
  8. LaurelW

    LaurelW Senior Member

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    And once again they have proven that they don't care to make this accessible to patients who can't spend hours on the phone. I don't get why they can't just include the sound with the webinar like everyone else in the world does.
     
    Valentijn, Kati, *GG* and 3 others like this.
  9. Mesurfer

    Mesurfer

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    Ok, thanks. I just tried to login but it isn't accesable with my iPad. I guess the phone will have to be good enough for now.
     
    Groggy Doggy and Nielk like this.
  10. Sing

    Sing Senior Member

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    New England
    I imagine that when the world is finally over, its rise, fall and dramas complete, CFSAC will still meet the following year. Sue Levine may still be nobly trying to chair this committee, there still won't be a quorum and the CDC will still not have changed its website information. The recommendations will still be the same, but this time the government and its agencies will have the first good excuse they have ever had--they no longer exist.

    So, short of that, I decided to do something more productive with the day, being sorry that we haven't had a viable foothold in the federal realm. I'd have liked to been able to listen and find some useful information to report back, but for me there either isn't any or the noise-to-signal ratio is too high to make it worth my effort in finding it. I wish this were different for all of us.
     
    MEMum, Valentijn, halcyon and 7 others like this.
  11. Kati

    Kati Patient in training

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    Tweets from Hillary Johnson:









     
  12. Nielk

    Nielk

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    The new feature of allowing questions from stakeholders listening in is the only positive development at CFSAC meeting.

    Some quality questions were met with typical government speak.

    Question to CDC whether stakeholders will have a chance to review the new info to be posted on CDC website was met with - it's all based on stakeholders input - so no need to review.

    Question to FDA asking what their process for stakeholders input information ME/CFS was met with - we already know what stakeholders think so no need for further input and even though we agree that stakeholders input is vital, there is no process I place for that (and we don't plan on changing that).

    Question to CDC about tracking the disease ME/CFS like they track Ebola and AIDS was met with - it is it the job of federal government to track disease. The law says that it is the states that need to track these disease and report them to CDC. (But who tell the states which diseases to track?)

    Question about US funding trial in Rituximab was met with - Vicky Whittmore stating that the Norwegians are almost done with their trial and when they have their data, they will report back to NIH and FDA. (Not really answering the question)

    Question about having the new centers of excellence in the US start trials for Rituximab was met with - they will not be able to these tripe of trials for first 5 years. Although other individual investigators could apply for NIH grants to study Ritux. (We know what the chances of these being approved are)

    In addition, they announced that they have not selected new voting members because of the change in administration - even though some of these slots have been empty for over a year.

    There was a long conversation from a caller stating that she applied for a FOIA to SSA over a year ago and did not receive anything from them. She also said that emails to SSA have been ignored. She was told to email it to CFSAC. She said she did yesterday and day before. They said they never got it .... (Gov't speak).

    CDC stated (proudly) that they have published their Methods pAper on the CDC multi site study. This is 6 years since this study started and all they have published is their method of study! In addition, when asked about when data papers will be published, they had no timeline.

    CDC did say that the NK cell function part of the study has been approved and started.
     
    MEMum, CFS_for_19_years, Joh and 5 others like this.
  13. mfairma

    mfairma Senior Member

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    Yeah, I used to be baffled at how they acted and how they slept at night, now I'm just baffled why anyone bothers to participate.
     
    MEMum, RL_sparky, Sing and 1 other person like this.
  14. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Anyone know if a recording is available?
     
  15. Kati

    Kati Patient in training

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    The recording will be posted, usually within 2 weeks.
     
    MEMum likes this.
  16. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    Thank you.
     
    MEMum likes this.
  17. Gemini

    Gemini Senior Member

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    Bump, this begins in a few hours.
     
  18. lnester7

    lnester7 Seven

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    USA
    What is the Conference/Meeting Passcode: in the link?
     
  19. Gemini

    Gemini Senior Member

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    A passcode is given {i.e., 4510479} to establish a telephone connection for the Conference audio only.

    The web link is to let you separately view the slides with no audio...no passcode needed...
     
    Valentijn and lnester7 like this.
  20. Gemini

    Gemini Senior Member

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    Phone connection is working, but unlike yesterday the web link not working...

    Operator just said we need to enter conference number PWXW4299599 for web link...
     
    Nielk likes this.

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