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Requesting an Investigation

June 18th, 2013

You may recall that at the May 23, 2013 CFS Advisory Committee, voting members Eileen Holderman and Dr. Mary Ann Fletcher stated on the record that they had been intimidated for expressing their views. With assistance from two fellow advocates, I have a transcript of this portion of the meeting. Neither Chairman Dr. Gailen Marshall nor Designated Federal Officer Dr. Nancy Lee made any public comment about these allegations at the meeting or afterwards. No concern was expressed, and no investigation was promised.

The purpose of an advisory committee is to collect the advice of a diverse group of experts. The Federal Advisory Committee Act is designed to maintain a balance of points of view, and ensure that a committee hears public input and discusses issues before the public. If any voting member has been intimidated or threatened with removal from the committee for expressing an opinion then the entire advisory committee process has been undermined. If the intimidation was perpetrated by a federal employee, then there is a very serious problem.

Let me be clear: I do not know if these allegations are true. I do not know who threatened Dr. Fletcher with removal from the committee for expressing her views. I do not know what was said that made Eileen Holderman feel intimidated. But I don’t have to know the details. Two voting members have alleged that they and an unknown third member have been intimidated or threatened. Those allegations are very serious, were made on the record, and must be investigated.

Accordingly, I have joined with twelve organizations and twenty-three advocates to request that the General Counsel of DHHS investigate these allegations. The allegations are too serious to be swept under the rug and never mentioned, like it’s a dirty little secret. The public has a right to know if the allegations are true, and we have a right to see corrective action taken if that is required. The letter takes no position on whether the allegations are true. All we ask is that a proper investigation be conducted by the General Counsel’s office. You can see the letter here, and the text follows below:

Dear Mr. Schultz,
On behalf of the undersigned organizations and individuals, I am writing to request your immediate investigation into alleged intimidation of three voting members of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), a Department of Health and Human Services advisory committee housed within the Offrce on Women’s Health. As organizations and advocates serving patients with Chronic Fatigue Syndrome (CFS), we have a longstanding interest in federal policy regarding CFS.

At its most recent public meeting on May 23,2013, voting member Eileen Holderman stated that Dr. Nancy Lee, the Committee’s Designated Federal Officer (DFO), had intimidated her and two others. Voting member Dr. Mary Ann Fletcher stated that she had been threatened with eviction from the Committee for expressing her views. The third member subjected to the alleged intimidation was not identified. We have enclosed a transcript of portion of the meeting during which these allegations were made, and highlighted the allegations on pages 3 and 4.

The independence of the CFSAC and the balance of views among the membership are essential to its advisory role. Threats or intimidation of voting members for expressing their views, particularly by the DFO, would materially impair the CFSAC’s ability to formulate recommendations to the Secretary. Despite the seriousness of these allegations, neither Dr. Lee nor Chairman Dr. Gailen Marshall made any public comment, nor did they promise to look into the allegations or take corrective action.

Therefore, we must ask you to investigate these allegations immediately, and establish whether any voting member of the CFSAC has been intimidated or threatened for expressing their opinions.

Thank you for your prompt attention to this matter.

Sincerely,

Mary Dimmock, for the undersigned organizations and individuals

 

  1. Tom
    June 18th, 2013 at 10:06 | #1

    Just a thought that occurs. This sounds like it was worth complaining about. But probably in general, advocates and groups may need to be careful that there aren’t too many complaints about the CFSAC or else perhaps it won’t be renewed. Of course, if it’s totally dysfunctional, perhaps some might say that wouldn’t be the worst thing. But it probably has a value e.g. in putting the CDC under the spotlight. So it may become important to pick battles carefully.

    • Jennie Spotila
      June 18th, 2013 at 12:49 | #2

      Absolutely, Tom. This is definitely a concern that I keep in mind when participating in these kinds of actions.

  2. Kati D
    June 18th, 2013 at 12:13 | #3

    Thank you Jennie

  3. Sasha
    June 18th, 2013 at 12:21 | #4

    Well done, Jennie, and the other signatories. I’m amazed that CFSAC itself or whoever runs it didn’t immediately launch their own investigation. We shouldn’t have to ask.

  4. Amy S
    June 18th, 2013 at 19:29 | #5

    Thank you Jennie and fellow advocates for pushing for good government! Good government serves us all well.

  5. Janelle Wiley
    June 18th, 2013 at 23:29 | #6

    well done Mary, Jennie, and others. Thanks for following this up.

  6. akrasia
    June 19th, 2013 at 16:37 | #7

    @Tom

    The CFSAC serves the government much more than it helps the situation of patients. It allows the major institutions, such as the CDC and NIH, to assert that they are faithfully discharging their responsibilities and acting as honest interlocutors. They can claim enormous credit without actually doing anything substantial. Quite a trick.

    I guess I am among those who would not care that much if the semi annual trip to the Potemkin village was cancelled. But in view of potentially what is coming from the private sector research community, and I’m thinking here of the CFI initiative spearheaded by Lipkin, I don’t think there is much chance that the committee will disappear.

    At some point, the consensus will shift to the view Dan Peterson articulated in one of the segments of the round table sponsored by Simmaron. There is an epidemic and it’s not being addressed. At that point the government will point to things like the CFSAC and say but we did our best.

  7. Justin Reilly
    July 6th, 2013 at 02:30 | #8

    Thanks to Jennie and those others who drafted and signed this letter. This is an issue that must be looked into.

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