Nothing to See Here

After more than four months, Assistant Secretary Dr. Howard Koh has finally responded to our request for an investigation into the allegations that Dr. Nancy Lee attempted to intimidate at least two voting members of the CFS Advisory Committee. His response boils down to something along the lines of, “Ok people, move along, nothing to see here.” In fact, his letter is so dismissive of the allegations and so vague on what he’s done about it, that it barely qualifies as a response at all.

Quick Review of The Facts

At the May 2013 CFSAC meeting, Eileen Holderman and Dr. Mary Ann Fletcher said that they had been intimidated by Dr. Nancy Lee and threatened with removal from the Committee for expressing their views. They said a third CFSAC member had also been intimidated.

On June 12, 2013, forty-six organizations and advocates wrote to the General Counsel and requested that he investigate the allegations.

On June 21st, the matter was referred to Assistant Secretary Koh. On August 22nd and September 20th, we wrote to Dr. Koh and requested an update on the investigation. We received no response or acknowledgement of our requests.

A Non-Responsive Response

In an letter to Mary Dimmock dated October 31st (but not received by her until November 7th), Dr. Koh finally responded. You can see the full letter here, but I’ll parse the salient points for you:

The concerns that have been expressed by the members will be taken into consideration as the Committee moves forward in working to accomplish its mission.

This makes no sense at all. Eileen Holderman and Dr. Fletcher did not express “concerns.” A concern is something along the lines of I’m-concerned-that-we-don’t-get-meeting-materials-in-advance. That’s a concern that can be “taken into consideration.” Holderman and Fletcher made allegations of improper conduct by the Designated Federal Officer of the Committee. That’s more than a concern. But Koh doesn’t even acknowledge the nature of the allegations. Nor does he describe what he did to investigate them.

However, it is important to understand that the Designated Federal Officer for CFSAC, Dr. Nancy C. Lee, has authority to engage in private conversations with individual members of CFSAC.

I am not aware of anyone disputing that Dr. Lee can talk to individual members of CFSAC. The allegations were not about the propriety of Dr. Lee talking to CFSAC members. The allegations were about what she said.  This is what we asked the General Counsel to investigate: Did Dr. Lee tell one or more members of CFSAC that he or she could be removed from the Committee for expressing a point of view? That is the question that must be answered.

These discussions may be confidential in nature . . .

Um, okay. As far as I am aware, CFSAC doesn’t deal in matters of national security. They don’t receive confidential corporate documents the way members of FDA advisory committees do. I have no idea what’s so hush hush about it. But even if I accept the proposition that certain discussions are confidential, I hear something a bit ominous in this comment from Dr. Koh. By telling us that those discussions might be confidential, is he saying that Holderman and Fletcher have done something wrong in making their allegations public? Is he actually claiming that they are not permitted to disclose conversations that, at least in their opinion, represent improper behavior by a federal official? Seriously? Is he suggesting that there will be a backlash against any member who speaks out about that kind of behavior? Really?

. . . and also may involve providing information about the rules and regulations of the Federal Advisory Committee Act as they relate to managing CFSAC and the roles and responsibilities of the Committee members.

Permit me to decode this for you.  What this sentence tells me is that Dr. Koh did look into the allegations, although he is completely silent on who he spoke with or what that involved. The sentence also tells me that his conclusion is that Dr. Lee provided information to Holderman and Fletcher (and perhaps the third member too) about the rules and regulations of FACA as it applies to them, and that is the only thing Dr. Lee did.

This simply does not add up. FACA does not state that advisory committee members can be removed for expressing their points of view.  After all, the advisory committee exists for members to do precisely that. Furthermore, FACA requires that advisory committees have a balance of membership and views, so removing a member for expressing a different point of view would unbalance the committee and potentially violate FACA.

Either Fletcher and Holderman are not telling the truth about what Dr. Lee said to them, or Dr. Lee is not telling the truth about what she said to them, or there has been some kind of epic misunderstanding that Koh has failed to identify. And since Koh’s letter gives us no information about whether an investigation was conducted, who was interviewed, and what the findings were, we have no ability to unravel this mess.

All engaged in this activity should conduct themselves in a manner that is conducive to respectful and candid discussions.

I think this sentence is code for: one or more people are not conducting themselves appropriately and they should knock it off. Of course, the letter does not specify who needs to knock it off. But read between the lines. He has already said that Lee behaved appropriately. So the only people left to knock it off would be the CFSAC members who complained.

Completely Unacceptable

This non-responsive response is unacceptable for so many reasons, it’s hard to know where to begin. We started with seeking advice from multiple sources, including legal, political and advocacy sources. After consultation with a variety of sources, Mary Dimmock has sent a second letter to the General Counsel of HHS. You can read the full letter here, but these are the main points:

  • Dr. Koh failed to adequately investigate and resolve the allegations.
  • Dr. Koh’s letter contains no evidence or assurance that these allegations are unfounded.
  • The failure to resolve the allegations is not at all conducive to respectful and candid discussions.
  • Public trust and confidence in the work of the Committee has been undermined and all but destroyed.
  • The public cannot trust that Committee members are free to provide honest advice to the Secretary.

The letter then renews our request, that the General Counsel and not Dr. Koh:

investigate these allegations immediately, and establish whether any voting member of the CFSAC has been intimidated or threatened for expressing their opinions. At a minimum, your response should detail what steps were taken to investigate, your findings on the facts that support or refute the allegations, and what specific corrective action has been taken.

Will it work? I’m not certain. On the one hand, the General Counsel handed us off to Koh before. On the other, Koh’s response is so vague and the issue of public trust so significant, that the General Counsel certainly should step in and do the right thing. I think it’s vitally important to get matters like this on the public record. We are accumulating more and more evidence of a systematic pattern of ignoring our concerns, downplaying the seriousness of the situation, and flat out subversion of good government practices. There are plenty of other people who are interested in this sort of thing, even if the General Counsel isn’t.

It never ceases to amaze me. Do they think we’re stupid? Do they think that hand waving and “These aren’t the droids you’re looking for” Jedi mind tricks actually work? Or are they counting on the media or Congress or the Office of Inspector General* being completely uninterested in what’s going on? We’ll see.


Note: Remember, there is a difference between the Office of the General Counsel (which “supports the development and implementation of the Department’s programs by providing the highest quality legal services”) and the Office of Inspector General (which is “dedicated to combating fraud, waste and abuse and to improving the efficiency of HHS programs.”)

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29 Responses to Nothing to See Here

  1. Kati D says:

    Well done, Jennie and many thanks to you and Mary Dimmock for uncovering the uglies. We have to go through the bottom of this. Hush hush beavior in response of the allegations are simply not acceptable.

  2. Pingback: Another Non-Answer from HHS | Speak Up About ME

  3. Ess says:

    Ditto on that with KUDOS to Jennie and Mary Dimmock. Thanks so much, Jennie, for reporting and sharing this and — organizing and breaking it down for us to see clearly.

    TRUE–staying ‘quiet’ as to their UNacceptable response, which shows CLEARLY this allegation was NOT taken as SERIOUS and = ‘no-never-mind’–is EXACTLY what ‘they’ want — for us to just ‘quietly’ go away — a common tactic–put up roadblocks, to try to discourage–make us STOP, SHUT UP and GO AWAY.


    AS the ROADBLOCKS keep on coming–we will continue to SPEAK UP AND CHALLENGE the WRONG-DOINGS and PLOTS against the ME/CFS people / patients/ community — and the rights of all including THE YOUNG–the children and teens stricken with ME/CFS.

    The allegations are NOT ‘simply’ a concern–the allegations are very SERIOUS!!

    I think that we need to pull out more tools from OUR toolbox–perhaps the press needs to be hearing about this !

  4. Toby says:

    Thanks to Jennie and Mary Dimmock!

  5. So grateful to Jennie and Mary.

  6. Gabby Klein says:

    Thank you Jennie and Mary for staying on top of this.

    I would guess that Dr. Koh felt he better send something our way before the actual CFSAC meeting. Did he really think that this would satisfy us? He is basically giving a nod and a wink to Nancy Lee to continue her dispensation of the ‘rules’ of CFSAC. This, without any formal investigation into the allegations.

    How can we feel confident that all members of CFSAC now feel free to express their opinions and to vote as they freely wish?

    This whole process might just be a sham with members being bullied into submission. do you feel comfortable that this committee is being conducted in a democratic manner?

    I don’t and I can’t see how CFSAC members would feel free now to say as they please without the fear of ‘threats’.

    • Jennie Spotila says:

      Gabby, that’s precisely the point Mary made in the letter. We can have no confidence that members are being honest when allegations like these are dismissed.

  7. Molly says:

    Is this Government sanctioned bully leadership, or blatant discrimination against those who truly take their role on CFSAC as Patient Representatives genuinely critical? When Voting Members are treated with this much disregard, it speaks of the lack of value of those of us this Government Entity is designed to support. It seems that from the beginning, through all the years of millions of lives being selectively discarded, the CDC has targeted us for authorized disease discrimination and with the sanctioned health care inequality of epic design. How long do we suffer without breaking the abuse cycle? More questions than answers, but definitely feeling a deep sense of no confidence in this leadership and minimal respect for the process that is to resolve our lack of serious health care needs. How can this be changed and get back on track.

  8. Deborah Waroff says:

    It seems that, as the General Counsel handed us off to Koh, and Koh treated us in illegitimate fashion and supported illegitimate goings-on in the workings of the CFSAC and HHS, the logical next step must be to go to the Inspector General.

    • Jennie Spotila says:

      To do that successfully, we need at least one (preferably all three) committee member involved to participate. There are three people who have legitimate concerns, and I wouldn’t want to put them in a worse place than they already are.

  9. readyforlife says:

    Can you say Dictatorship….that’s what our government agencies have turned into. I’m sorry but this is over the top. If you list all the things our Government has done to our community it screams Dictatorship. Just look at just this year, intimidation, IOM and changing the CFSAC meeting from Three days to two and not having it on a webcast for us to watch or attend. Just another way of shutting us up. Or punishing us for our out cry regarding the IOM. How many other meeting were cut to two days??

    • Jennie Spotila says:

      Actually, almost every CFSAC meeting has been two days. In 2010 or 2011, the spring meeting was one day and the fall meeting was three days.

      We’ve asked if the spring meeting will be extended since this meeting is actually less than two days (12-5pm each day). No answer.

      People have been wondering if this is legal. It is, as is having a webcast instead of in person. The legal advice I got was that the government has very broad discretion under the Federal Advisory Committee Act.

  10. Ess says:

    Do we know if these committee members will speak up to challenge this further?? There is power and strength united together vs. going solo. @Jennie Spotila

  11. Ess says:

    The thing is–we are in the FIGHT for our lives here–YESSS, our verrry lives–AND that includes the children and young people–STUCK in ME/CFS–and even more—the GENERATIONS to come–WORLD WIDE!

    The best way to deal with BULLIES is to STAND UP to them AND KEEP STANDING UP TO THEM!!

    This PERSECUTION AND INJUSTICE AGAINST pw ME/CFS is WRONG–all sooooo WRONG, and that is the ‘gentlest’ way I can put this.

    Remember who is leading this — the ME/CFS Experts/Researchers–WORLD WIDE and the WORLD WIDE Advocates–backed up by . . . ALL of US!!

  12. Justin Reilly says:

    This be messed up!

  13. Ess says:

    I must say, Justin, that I really enjoyed the depiction you posted of Sir Wessely as BOZO THE CLOWN 🙂 LOVED it!!!

    A little more on ‘NOTHING TO SEE HERE’. Yesterday afternoon I e-mailed my five-page public comment to : as specified in the instructions.

    I asked for a read receipt; didn’t happen–‘nothing to see here’–soooo, I followed up with an e-mail @ noon today enquiring–pls advise if received, etc.–and, again, asked for a ‘read receipt’–NO response to ANY of that–‘nothing seen there again’!

    This is a serious concern, begging MANY questions–is this e-address ‘real’–is anybody at the other end–or is this just a ‘virtual’ setup–more in the way of ROAD BLOCKS??

    NOT impressed!! Anybody else noticing this ?? If I DO get a response–I will let you know.

    I guess if this Seamon Corporation is in charge of ‘this’ — then it is THEIR fault if things go haywire—NOT CFSAC . . . nothing to do with them will be ‘the story.’

    • Jennie Spotila says:

      I’ve emailed my comment twice, asking for confirmation both times. Nothing. I’ll send again tomorrow and Friday. If I don’t get confirmation, I’ll send to the CFSAC address too. My advice is move the “sent” email out of your sent folder and into another folder. That way you have proof of when you sent it.

  14. Michelle says:

    And so we enter yet another circle of the ever growing hell of gross incompetence that has become HHS/ORWH…

    I’m actually starting to wonder if the ORWH, in addition to being a purgatory for diseases like ours, is also a purgatory where NIH/DHHS sends its incompetent employees they don’t know what else to do with (who then seem to contract out to incompetent tech companies…). :::sigh:::

    Politico has an interesting article by a man named Clay Shirky about why the site has become such a clusterf!@#. What I found interesting was how Shirky also seemed to spell out so well the problems that we in the with ME/CFS community have been having with HHS. Shirky spent the 1990s as a tech consultant and noted that

    The preferred method for implementing large technology projects in Washington is to write the plans up front, break them into increasingly detailed specifications, then build what the specifications call for. It’s often called the waterfall method, because on a timeline the project cascades from planning, at the top left of the chart, down to implementation, on the bottom right.

    The “management” and “cultural problem” that arises from the “waterfall method” is that those who actually have the information/skills to make the things that management wants to happen actually happen are not allowed to tell management what is needed. Management insists on speaking only to an outside consultant, such as Shirky, rather than their own tech people about why things aren’t working and how to fix them. Shirky ended the piece noting that such spectacular tech problems will happen again so long as, among other things “…politicians can be allowed to imagine that if you just plan hard enough, you can ignore reality…[and] as long as management regards listening to the people who understand the technology as a distasteful act.”

    Replace “politicians” with “HHS bureaucrats” in that last sentence, as well as “management” and “technology” with “HHS bureaucrats” and “research and clinical care” and it’s precisely the problem we face with HHS regarding IOM and CFSAC. Or, at least that’s what I thought when I read the piece. Then again, perhaps the IOM/CFSAC/HHS fiasco is just coloring too many of my thoughts these days. 😉

    • Jennie Spotila says:

      My husband is an information architect, and he’s followed the fiasco very closely. If I need an entertaining way to spend a half hour, I just ask him a question about it. It’s like a wind up toy. Just get him started and he’ll go on, pretty much indefinitely, using an escalating number of curse words. 😉 It would be hilarious if the underlying story wasn’t so dreadful.

  15. Ess says:

    Jennie–still NO confirmation–Will you please post the CFSAC address–like you, I would now also like to send my comments directly to CFSAC. Thank you! ll

    Interesting piece, Michelle–WOW–says it all . . . GROSS INcompetency. @Jennie Spotila

  16. Ess says:

    Nobody home @ the other end of either. I’ll hold my other comments for the time being.

  17. Deborah Waroff says:

    Of course this government has sanctioned bully leadership. They threatened a kid with 18 years jail for hacking into MIT computers to access overpriced academic journals, even though neither MIT nor the journals were pressing charges, and thereby terrorized him into suicide.

    I think we have to get tougher. The General Counsel is there to keep HHS looking good. The Inspector General is a better possibility, though outside the department might be better still. Justice Department? It’s a federal law. Congress of course gets a notice. And next time it should be a lawyer representing Eileen and Mary and Number 3 who deals with Koh. He is just another long-term bureaucrat who knows that he can get away with anything short of abusing Malia and Sasha.

  18. Rev Bernard F. Hillenbrand says:

    For a quarter of a century hundreds of thousands of victims of CFS and their care takers have endured grave sufffering but with hight hopes that the vast Federal Medical Resources would bring releif from suffering and perhaps a cure. It seemed reasonable to expect that after this long time they would have identified a “Marker” to determine who has the disease and who does not. To date surveying the federal medical investment to fight this disease it seems miniscule as against the staggering loss of revenue from unemployed victims. Worse still the bureacracy proposes a new grant to challenge the long established Canadian Criterie for Myalgic Encephalomyelitis. This is not essential will cost money and forments more delay. We are Americans. We have moved medical mountains in the past and we can do it agian. Rev. Bernard F. Hillenbrand

  19. Ess says:

    As to submissions to the CFSAC, seems ‘this week’ they are ‘in’–got confirmations as to receipt from Seamon Corp and CFSAC; I first started sending LAST Monday.

  20. Ess says:

    Today, December 2nd I received a CURIOUS response, ‘with a twist,’ from CFSAC:

    Ms ____

    “We have been told by Seamon Corp. that they are responding to your inquiry today. Please let us know if you do not hear from them.

    Because of your concerns, we will accept your testimony, even if it was received after Nov. 29.

    Thanks for your interest in CFSAC.”
    (no specific name as to a signator)

    My response ‘reply all’ to CFSAC and Seamon Corporation

    “Thank you for the courtesy of a response indicating that my testimony has been received as at December 2, 2013.

    As stated and evidenced by the dates, my testimony was first sent on November 25th and lastly sent on November 29, 2013 — submission of testimony followed the guidelines and was SENT within the time limit–notably you are acknowledging receipt as at December 2nd.

    The issues at hand surrounding ME/CFS are very serious matters, indeed.


    Sooo, the little ‘twist’ was with CFSAC stating RECEIPT date ‘even if it was received after Nov. 29’–CURIOUS little twist, MOST curious. Their website specifically says — The deadline TO REGISTER AND SUBMIT public comment is Friday, November 29, 2013.

    At first surface glance, it may seem ‘fine’–they are acknowledging receipt (finally) — but what else is potentially being said ?

    The talk of when testimony is ‘received’ . . . Let’s hope they aren’t using this AGAINST others’ testimony!!!!

  21. Pingback: Request to Secretary Sebelius: Please Replace Dr. Nancy Lee with a More Suitable CFSAC Designated Federal Officer – Paradigm Change

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