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Another CFSAC Violation- Jennie Spotila

Discussion in 'Action Alerts and Advocacy' started by Nielk, Nov 24, 2014.

  1. Nielk

    Nielk

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    http://www.occupycfs.com/2014/11/24/another-cfsac-violation/

    "Today I must report that once again, the CFS Advisory Committee violated federal law. This time, recommendations made by the Committee were illegally altered after the public meeting. The story of what happened, how I got it fixed (hopefully), and who might be responsible is another disturbing chapter in the saga of how HHS tries to disregard the law with impunity.

    What Happened

    After the recommendations from the March 2014 meeting were posted on the CFSAC website, Mary Dimmock and Denise Lopez-Majano noticed that something was wrong. The recommendations did not match what they recalled from watching the meeting. At first, we thought it was just the omission of references to the Canadian Consensus Criteria, but as I looked more carefully I found the changes went way beyond that."( More HERE)
     
    Last edited: Nov 24, 2014
  2. A.B.

    A.B. Senior Member

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    This is very disturbing. Someone doesn't like the idea of ME/CFS getting proper funding. Removing references to the CCC which would act as guideline is also disturbing, as it allows them to present the disease in any way they wish - most likely as psychosocial problem.
     
  3. Wildcat

    Wildcat

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    .

    Brazen removal of all the references to the CCC. Those people are taking the piss.
    .
     
  4. Kina

    Kina

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    @Nielk, the 'More HERE' link is no working.

    Good catch Mary Dimmock and Denise Lopez-Majano and thanks to J. Spotila for taking them to task on this.
     
    Iquitos, WillowJ, RustyJ and 7 others like this.
  5. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    By now, for goodness sake, people should accept there IS a conspiracy against this illness. This is more proof that some folk "want it to go away"
    Of what type/scope this criminal abuse of process and responsibility is, who knows?
    probably several reasons/outlooks/groups pushing things their own way regardless of fact. One I bet is because they don't want proven to have negligently overlooked and abused and thus contributed to the illness and deaths of millions of people.
     
    Last edited: Nov 24, 2014
  6. A.B.

    A.B. Senior Member

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    There's quite a difference between

    and

    The second version is vague and allows them to pick whatever definition of CFS they like.

    Also note how the referrals part is removed - no specialist referrals for patients.

    There are several other parts where references to the CCC acting as guidelines are simply removed, whith the result being a vague recommendation that lets them do whatever they want in the end.
     
  7. alex3619

    alex3619 Senior Member

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    Is this the IOM and P2P agendas in action?
     
  8. jspotila

    jspotila Senior Member

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  9. jspotila

    jspotila Senior Member

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    Yes, the "dumbing down" of the recommendations is pretty egregious. One effect was making it easier for the Department's response to be yes, yes, we're doing that, yes. That response disappeared from the CFSAC website along with the illegal recommendations on October 7th.
     
    PNR2008, catly, zzz and 4 others like this.
  10. Kina

    Kina

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    jspotila likes this.
  11. user9876

    user9876 Senior Member

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    Is there an audit body that checks how government functions in the US? To me there is a serious issue where a committee recommendations are changed and this leads to the award of a single sourced contract. The lack of strong process around these issues leaves an organization open to internal fraud and hence I think auditors would see it as a serious audit violation.
     
    melamine, Iquitos, WillowJ and 5 others like this.
  12. Gingergrrl

    Gingergrrl Senior Member

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    @jspotila Thank you from the bottom of my "dysautonomic" heart for all that you continuously do to advocate for all of us PWC's who are too ill to do it ourselves. Your dedication is unwavering and it is and will continue to pay off. You ROCK!!! :thumbsup:
     
    AndyPandy, Iquitos, WillowJ and 2 others like this.
  13. alex3619

    alex3619 Senior Member

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    I wonder if a global letter from advocacy proclaiming a complete lack of confidence in the two individuals, and asking them to step down and cease any involvement in any CFS related matter would have an impact?
     
    Scarecrow, SDSue and *GG* like this.
  14. Denise

    Denise Senior Member

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    Hi,
    If I understand correctly (not a great brain day on my end) @alex3619 your suggestion is a letter about lack of confidence in Gailen Marshall and Nancy Lee?
    Gailen Marshall is no longer on the CFSAC - his term ended earlier this year (replaced as chair by Sue Levine) and Barbara James will be replacing Nancy Lee as CFSAC DFO presumably beginning with the December 2014 webinar meeting (http://www.hhs.gov/advcomcfs/meetings/)
     
    jspotila likes this.
  15. alex3619

    alex3619 Senior Member

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    @ Denise, yes. That is well and good, but what about other involvement. Its not just about CFSAC, but about ANY involvement in CFS. I am aware CFSAC involvement is often temporary, but for Nancy Lee in particular I think there is other involvement? Maybe someone can comment.

    Its also not just about these two. We need to send a message. Any involvement that is demonstrably suspect may result in advocacy action. We have been playing too nice for too long. I am not just talking about the US either, but globally. Nice has failed us, its time to be nasty.
     
  16. *GG*

    *GG* Senior Member

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    Good question but doubt it. The gov't doesn't give a shit about us, about time most people realize this and start voting for less gov't!

    GG
     
  17. alex3619

    alex3619 Senior Member

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    I know they don't care about us, collectively at least, but they do care about scandal.
     
  18. Denise

    Denise Senior Member

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    Once Barbara James is officially the CFSAC DFO, I believe that Nancy Lee's official involvement ceases. That said, Nancy Lee is Barbara James' boss, so the degree of Barbara James' autonomy remains to be seen.

    As for having been too nice too long and suffering as a result of (the) NICE (guidelines) - I agree that most of us have tried to be civil. I also think there is a place for all voices - civil, rowdy, etc.
    I also think we need to work strategically no matter what sort of voice we use.
     
  19. alex3619

    alex3619 Senior Member

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    I do not recall for sure, but who is the person who is coordinating responses to patient letters re P2P and IOM??
     
  20. Denise

    Denise Senior Member

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    I believe that responses re P2P would be via Susan Maier of NIH (former CFSAC ex-officio).
    Responses re IOM would likely come from HHS, and I believe (someone correct me please if I am wrong) they would come from Barbara James.

    Who have people recently been submitting letters to regarding IOM? (just curious - and also curious as to the responses received)
     

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