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Next CFSAC meeting June 16-17, 2014

Discussion in 'Upcoming ME/CFS Events' started by Nielk, Apr 24, 2014.

  1. Andrew

    Andrew Senior Member

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    It turns out none of the committee members were given the copies of the talks we sent in. There was only one notebook at the back of the room. There is no way every member can carry that one book home with them to check this out. The means there is no way for members to check on what I said.

    Yesterday I emailed a copy of my talk to CFSAC (rather than Seamon) in the hopes that might get it into the hands of members. But I doubt that anyone will go to the trouble. So it dies here. OTOH, my expectations were never high. Even if they did look into this, HHS would just double talk their way around it.

    So why do I keep trying? Because it's the right thing to do. It's my way of supporting the other activists and making them feel like someone else cares. Because we do not have a snowball's chance in hell unless we try.
  2. Nielk

    Nielk

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    On the positive side, the three new voting members of CFSAC had a great start. They seemed well prepared, involved and not afraid to speak up. With Susan levine as the chair at the next meeting, I am hoping for a better meeting.
    dandy1day, Sing, Kati and 6 others like this.
  3. Denise

    Denise Senior Member

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    Andrew - do you have confirmation that written comment (provided by the deadline) was not in the binders provided to committee members? I was not clear on that based on what was said during the meeting.

    In recent years HHS/CFSAC has been pretty firm that if written comment is not submitted by the deadline, it won't be provided even in the public record so it will be interesting to find out if what you submitted to CFSAC yesterday is provided to committee members by HHS. Please let us know.
  4. Denise

    Denise Senior Member

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    Andrew - do you have confirmation that written comment submitted by the deadline was not provided in committee member's binders?

    In recent years, HHS/CFSAC has been pretty firm that if written comment is not provided by the deadline it is not provided to members and not posted either. It will be interesting to see if that's the case. Please keep us posted Andrew.
  5. Andrew

    Andrew Senior Member

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    I asked someone who knows committee members to confirm this, and the CFSAC member confirmed they were not given copies. If you were watching, you might have noticed that after I mentioned my hard copy, some members looked and could not find. The response was "there's a book in the back of the room." The response was not "we will make sure you get copies."
    Valentijn and Sasha like this.
  6. Denise

    Denise Senior Member

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    This is very disconcerting news Andrew. It means that those who only provide written comment (can't provide comment in person or by phone etc.) are not heard at all by the committee because the committee does not have ready access to their comments.

    Having access to written public comment limited to a book at the back of the room seems woefully insufficient.
  7. jspotila

    jspotila Senior Member

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    @Andrew I will publish your testimony on my blog if you would like. Email me jspotila AT yahoo DOT com. It doesn't fix the problem @Denise pointed out regarding the other testimony, but I can think of several ways we can deal with this. I will need your help to do so, Andrew, so please email me.
    NK17, Valentijn, Ritto and 1 other person like this.
  8. Sasha

    Sasha Fine, thank you

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    Thanks for testifying yesterday, @jspotila!

    It would be great to have all the testimonies in one place somewhere. I was disappointed to miss Eileen Holderman's - I got called away to the phone.
    Desdinova and NK17 like this.
  9. WillowTree

    WillowTree ME/CFS is NOT fatigue!

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    I also would like for the five minutes per speaker to be restored. Three minutes is simply insufficient. I wonder how the allotted time was arbitrarily reduced to three.
    dandy1day, Cheshire, leela and 4 others like this.
  10. Denise

    Denise Senior Member

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    I agree that 3 minutes is insufficient!
    I don't know how the time was reduced to 3 minutes from 5.
    If I remember correctly public comment time slots were 3 minutes until 2010 when they were increased to five and the bylaws (which have since been removed) were amended to reflect the increase.
    That said, other advisory committees only provide 3 minutes/slot.
  11. Nielk

    Nielk

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  12. jspotila

    jspotila Senior Member

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    Sasha likes this.
  13. Nielk

    Nielk

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  14. Nielk

    Nielk

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  15. Nielk

    Nielk

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  16. Kati

    Kati Patient in training

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  17. Bob

    Bob

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