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Allegations about CFSAC Dismissed

Discussion in 'Action Alerts and Advocacy' started by jspotila, Nov 25, 2013.

  1. jspotila

    jspotila Senior Member

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    Hi all,

    As you may recall, Eileen Holderman and Dr. Mary Ann Fletcher made allegations at the last CFSAC meeting that Dr. Nancy Lee had tried to intimidate them for expressing their views. A coalition of organizations and individuals wrote to the General Counsel of HHS and requested that he investigate the allegations.

    What happened next is - well, I'm struggling to find the right adjectives. Suffice it to say, Assistant Secretary Koh sent us a letter back saying that there was really nothing wrong.

    I've written about it here: http://www.occupycfs.com/2013/11/25/nothing-to-see-here/

    Mary Dimmock has written to the General Counsel, renewing the request given the completely unacceptable response from Koh.

    What you can do: Boost the signal! The more people who know about it, the more accountability we can create.

    Also consider mentioning this in your CFSAC testimony (due November 29th).
    taniaaust1 likes this.
  2. Ember

    Ember Senior Member

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    In the official CFSAC minutes (a little different from the video), Dr. Lee demonstrates more than just her shaky grasp of the facts. She says, “The original recommendation said something about working on both clinical and research definitions.... We are now actively pursuing methods to address the clinical research definition part.... I think we should not discuss this anymore because I don’t want to take up the rest of the day:”
    Yet Dr. Koh writes in this context, “In providing direction and guidance for the Committee's activities, every effort is made to ensure that all the members are given equal opportunity to express their view points and opinions.”
    Last edited: Nov 25, 2013
    Iquitos, leela, Valentijn and 2 others like this.
  3. Nielk

    Nielk

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    Whose conduct us disrespectful here? What a condescending way Of Dr, lee to speak to Dr. Fletcher and the same regarding Dr. Marshall's harsh words towards Eileen Holderman.

    The fact is that at least two but, we were told three voting members felt threatened enough to verbalize this at an open CFSAC meeting and this was met with cold faces and no disruption of the process? Six months later, we are facing another meeting and nothing has been done about this. There was no formal investigation into these allegations and this pitiful letter coming from Dr. Koh is basically a nod and wink at Dr. Lee to continue the great job she has been doing.

    This is a total outrage!

    Is it a coincidence that similar outrageous behaviors are happening in the GWI advisory committee?
    Is it a coincidence that both CFS and GWI were chosen to be re-defined by the IOM?

    Who is pulling all these strings? We are being had. We need some strong voices here in opposition and we need to look into what legal actions we can take.

    Is this what CFSAC charter call for? To dominate, control, beat into submission the voting members in order to ensure that they tow the HHS line?

    Is this happening in a democratic state?
    Iquitos, leela, peggy-sue and 3 others like this.
  4. Ember

    Ember Senior Member

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    In the upcoming "meeting," to be staged as a webinar, who will know whether any committee member has "raised a hand" only to be ignored?
    Last edited: Nov 25, 2013
    Iquitos, readyforlife and jspotila like this.
  5. jspotila

    jspotila Senior Member

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    I wondered that too, Ember. Adobe Connect does have a way for someone to "raise a hand" but I doubt that will be transparent to anyone except the moderators. I also heard that the committee test of the system did not go particularly well.

    Unfortunately, the advisory committee system gives broad latitude to the government. With the facts and proof we have right now, we took the steps we could. However, as the letter to the General Counsel points out (and as I say in my public comment), the legitimacy of this committee is under a cloud until the allegations are properly investigated and remedied.
    taniaaust1 likes this.
  6. Firestormm

    Firestormm Guest

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    What did Holdeman and Fletcher have to say about the allegations made? Did they ever make a public statement and explain in more detail what their intimidation comprised? Seems to me that it might help to hear from them - assuming we haven't.
  7. Ecoclimber

    Ecoclimber Senior Member

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    I don't have any historical background myself on the CFSAC committee. There must have been some Fed, legal, statute, or Regs, or executive legislation governing the mission, purpose of these meetings, You don't have meeting just to have meetings for nothing. So some agency authorized the CFSAC committee with ME/CFS patients. Certain guidelines were written down required by the government

    I know about the cut back two 1/2 day web via the Internet. The webinars meeting are now cut back to two 4hour periods each day. One of my degrees was in HRM and as a director I was responsible for over 3500 employees in my division.

    I am asking, how does this not violate the ADA? Patients who are disabled and have no access to computers nor the internet to participate in this important event. They have a right under ADA to have Full Access to these meetings and hearings. I would inform the chair that their actions could be in violation of ADA and they must resume the normal format as stated under previous guidlines
    Last edited: Nov 26, 2013
  8. Nielk

    Nielk

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    I agree @Firestormm that it would have helped to hear from them but, I can understand how they would not want to come out with public statements before a formal investigation into the allegations happened. Don't forget, these are still active members on the committee.

    What we all know though, in a very public way is that at least three members of a government committee verbalized that they were intimidated and threatened by the DFO, Dr. Nancy lee who is a government employee. We asked for an investigation into the allegations. No formal investigation took place. Dr. Koh sent a letter white washing the whole affair.

    How comfortable are we now that all the members of CFSAC do not feel intimidated to speak their mind? Maybe all members have been told to toe the line or else....but, are afraid to speak up? This issue has not been resolved.

    How convenient too that this upcoming meeting is via webinar. The DFO does not have to face the members she allegedly intimidated.

    The question we should be asking is; 'why are they refusing to do a formal investigation?'
    Last edited: Nov 26, 2013
  9. alex3619

    alex3619 Senior Member

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    I do wonder if CFSAC will wind up with most members resigning en masse. That is how you deal with pervasive teflon-coated manipulation, no matter who is doing the manipulation.

    Then, as ex-CFSAC members, they speak out, become whistleblowers.

    Its just an idea. However we don't have all the facts. We are speculating.

    This is government and bureaucracy not democracy. In any case democracy is dying. Good governance is dying.

    Things will only get worse unless people make a stand. For now, with CFSAC and the Institute Of Medicine contract, that would be us.

    We have to insist on transparency and accountability, and voice no confidence without these.
    leela and Valentijn like this.
  10. leela

    leela Slow But Hopeful

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    One tiny detail that has always gotten my goat:
    Dr. Marshall, when speaking about this disease, always says "CSF."
    No, that is not a typo. CSF.
    He sits on the CFSAC and he cannot even say CFS.
    Purple and Nielk like this.
  11. jspotila

    jspotila Senior Member

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    Obviously, this is a very sensitive situation. Dr. Fletcher's term runs until 2016, so she is vulnerable to backlash from HHS. The third member involved has not been identified. I have had to move very carefully to try and push this issue while simultaneously protecting the three members involved. I won't force any of them to do something they do not want to do. I have been in touch with them, so please know that they were aware of this letter before it went in. Our options are limited, especially under these specific circumstances.
    Firestormm likes this.

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