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DHHS - soliciting for study on diagnostic criteria for ME/CFS

Discussion in 'General ME/CFS News' started by Nielk, Aug 28, 2013.

  1. Bob

    Bob

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    Here's an extract from the latest CFSAC email alert, dated 12 Sep 2013:


    Full text of email:

    Firestormm likes this.
  2. Nielk

    Nielk

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    This is way too confusing. There is money for a contract with IOM (I thought that was cancelled), but no money for a live meeting. In what world does this make sense?
  3. Bob

    Bob

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    Also, I wasn't aware that the IOM contract was a CFSAC initiative. Did I miss something there?
  4. Nielk

    Nielk

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    It's not a CFSAC initiative. It's a HHS initiative. This e-mail is he stated by HHS. They have said that they had cancelled their action with working on a contract with IOM - so I have NO clue as to what this e-mail means.
  5. Bob

    Bob

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    It's very confusing.
  6. Nielk

    Nielk

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    Bob - What I mean is that the e-mail was sent by HHS Secretary's office. They are the one's who charter CFSAC and set the agenda. The CFSAC members have no input in this. It's important to know the difference because since they sign it "CFSAC support team", the CFSAC members have probably now previous knowledge of this.

    It seems to me from this current e-mail action, that HHS is trying to bypass us - the patients. They don't want us there at the meeting when this upcoming fall meeting is probably the most important of it's history due to their probable contract with IOM. They are forging ahead with this whether we like it or not.
    '
    Bob likes this.
  7. Bob

    Bob

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    So, HHS sends out the emails on behalf of CFSAC.
    And HHS can easily misleadingly add its own information to the CFSAC list emails?
    Do you think that perhaps the chair of the CFSAC could have approved the message?

    Yes, it does seem like a bit too much of a coincidence, doesn't it.
    Perhaps they think it will be easier to silence disent in a conference call.
    This was the issue that caused the heated dispute at the previous meeting, wasn't it?
    I got the impression that the chair of CFSAC was in favour of HHS's actions at the last CFSAC meeting.
  8. Nielk

    Nielk

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    The mailing goes out to the CFSAC listserv -
    Anyone who signed up at their website http://www.hhs.gov/advcomcfs/index.html will receive a generated e-mail.

    When you look at the top of the page at the CFSAC site, you will see that it is part of HHS.gov. It is HHS who chartered CFSAC and they, through the DFO who set the meetings and the agenda - not the chair.

    Think of it as if the CFSAC voting members are invited guests to the hosts - HHS party (oops - I mean meeting)
    Bob likes this.
  9. Bob

    Bob

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    Thanks for the info, Nielk.
    As a UK person, it's difficult to get to grips with some of the US government processes.
    I had thought that CFSAC members control and set the agenda for their own meetings.
    The dividing lines between HHS and CFSAC (which I thought was supposed to have a certain level of independence) seem rather blurred and unhelpful.
  10. Nielk

    Nielk

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    From the article "Talking with CFSAC" - http://phoenixrising.me/archives/17766



    CFSAC was established by HHS (government), who also sets the charter (government). The meetings and agenda are set by the Designated Federal Official. (DFO) (government)
    The 11 voting members are from the public. (non-government) The 7 ex-officio members are non-voting. (representing different government agencies)






  11. Bob

    Bob

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    Thanku. This is the bit I wasn't aware of. Do we know who the DFO is? Is it someone who attends the CFSAC meetings?
  12. Nielk

    Nielk

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    Designated Federal Official

    Nancy C. Lee, M.D.
    I'm sure you recognize her name. She attends every meeting.
  13. Bob

    Bob

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    Yes, thanks for the info, Nielk. That's very helpful. I didn't realise that Nancy Lee had so much influence over the committee. The committee is not as independent as I thought it was.
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  14. Sasha

    Sasha Fine, thank you

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    Frustrating that members presumably can't propose items, such as the IOM issue or what happened with that patient rep (sorry, her name is lost in my memory!) at the last meeting.
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  15. Nielk

    Nielk

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    Her name is Eillen Holderman and she is our patient advocate - a voting member on the committee. She has been allegedly intimidated and threatened!!! See article on PRhttp://forums.phoenixrising.me/inde...ith-eviction-cfsac-spring-2013-day-two.23746/
    It has been over four months now.
    What has been done about this? Have we gotten a reply back from HHS about this?
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  16. Sasha

    Sasha Fine, thank you

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    Thanks! o_O

    I think it said on Jennie's blog that there'd been no reply. Disgraceful. And amazing.
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  17. Nielk

    Nielk

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