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Nominations to fill empty CFSAC seat(s)

Discussion in 'Action Alerts and Advocacy' started by Andrew, Sep 30, 2013.

  1. Denise

    Denise Senior Member

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    am currently aware of the following nominations for the CFSC (please let me know if additional nominations have been submitted)

    For consideration as patient advocates:

    Mary Dimmock

    Donna Pearson

    Joe Landson

    Lily Chu

    Jeannette Burmeister


    For consideration for research /clinical slots:

    Lenny Jason

    Derek Enlander

    Betsy Keller

    Gordon Broderick

    Jose Montoya


    Email endorsements supporting nominations should be addressed either to Martha Bond or Dr. Nancy Lee at cfsac@hhs.gov.

    If possible, send separate emails for each endorsement.

    Endorsements should be sent no later than Saturday, November 2nd 2013.


    Possible subject line: Endorsement of CFSAC Nominee

    Possible text for your endorsement

    I am writing in support of the nomination of (name of nominee) .

    (name of nominee) should be appointed to the CFSAC because (reasons).

    (sign your name)
    justinreilly, beaker, WillowJ and 3 others like this.
  2. Bob

    Bob

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    Thanku for the list, @Denise. It's very helpful.

    Does anyone know of any nominees that Denise has missed out, that we should be supporting?
  3. Denise

    Denise Senior Member

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    I have been told that Bob Miller has also been nominated.

    To clarify for people --- the term "patient advocate" is a convenience term -- there is no specific patient advocate position. But the CFSAC has usually had a member who was an advocate.

    The CFSAC charter puts it this way(emphasis mine):
    "The Committee shall consist of eleven members, including the Chair, who are appointed by the Secretary or the Secretary's designee. Of the eleven members, seven shall be biomedical research scientists with demonstrated expertise in biomedical research applicable to CFS; four shall be individuals with expertise in health care delivery, private health care services or insurers, or voluntary organizations concerned with the problems of individuals with CFS. " http://www.hhs.gov/advcomcfs/charter/index.html
    justinreilly, WillowJ and Bob like this.
  4. Dolphin

    Dolphin Senior Member

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    I hope people who don't get picked won't get despondent and not put themselves forward/allow themselves get put forward again.

    I have been disappointed that Joan Grobstein MD's name hasn't been put forward; I recall she was put forward before*

    *there is a small chance I am getting mixed up and this was for a different committee.
    justinreilly, jspotila and WillowJ like this.
  5. Bob

    Bob

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    Does anyone have an opinion about whether we should include our full postal address when we send emails in support of nominees? And should we include our status, e.g. 'a patient'?
    WillowJ likes this.
  6. Bob

    Bob

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    @Denise, I believe that Lily Chu works as a researcher/scientist, as well as being a patient advocate.
    justinreilly likes this.
  7. WillowJ

    WillowJ Senior Member

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    yes, we have more great people nominated than positions open. This is a good thing, but not all will end up on the committee.

    In order to nominate someone, one has to be in contact with them, to ask them if they want to serve, get their CV/resume', etc.

    In the future, if someone knows someone they'd like to see on the committee, they could take their info. If they feel they can't put in the nomination because they are out of the US (I don't know what the rules about nominations are?), that could be handed over to a US person who liked the nominee but didn't have contact.

    Or just encourage them to nominate themselves. :) I'm happy that Dr. Lily Chu did this. I'd be very pleased to see her on committee.
  8. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    On Nov 6, CAA announced it had nominated two people for CFSAC.
    Michael Decker, PhD, was, according to Dr. Enlander, one of the geniuses behind the CDC's Kansas random-digit-dialing cohort studies.

    CAA didn't reveal much about its nominated patient DJ Gilbert, other than he showed up at a CAA Catalyst Cafe event, took a shine to Dr. Vernon and declared "my kryptonite had been my achilles heel for far too long." I can think of some more qualified patient advocates, but none fresh-off-the-boat enough to not get that CAA is the enemy.

    http://www.research1st.com/2013/11/06/nominations-for-the-federal-cfs-advisory-committee/
    http://www.cfids.org/solvecfs/summer-2013.asp
    Nielk and Valentijn like this.

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