December 2014 CFSAC Comments: HHS’s Complete Disregard for Law and Health of Patients

In January, I sued HHS and NIH for violation of the Freedom of Information Act, FOIA, in connection with my FOIA request for documents relating to the IOM study. I won the lawsuit by prevailing on my summary-judgment motion for a proper document production.

The Federal Court held that “the government’s conduct throughout its dispute with Ms. Burmeister was unreasonable” and awarded me my entire attorneys’ fees of over $139,000.

True to form, HHS and NIH have not paid or even committed to paying in spite of my numerous requests.

I did everything in my power to avoid legal fees, for example, I sued without attorneys at first. Yet, the government fought me tooth and nail trying to avoid compliance with federal law and to delay production of responsive documents as long as possible, necessitating my engaging attorneys at the government’s, hence taxpayer’s, expense. The defendants have consistently acted inexcusably and shamefully, really, in their relentless attempts to circumvent their FOIA obligations. They filed a frivolous summary-judgment motion five months into the litigation when they could have used all that time to simply remedy their FOIA violations. Two months later, they doubled down by filing another brief making meritless legal arguments and misstating the law and the facts—the latter, under penalty of perjury. After they lost, they wrongfully accused me of lying.

HHS and NIH have directly caused my health to dramatically deteriorate as a result of their deplorable conduct. They have done everything to prolong this litigation and drive up my attorneys’ fees, arrogantly not anticipating the Court’s ordering them to reimburse me. The DOJ, in defending and enabling this behavior in Court, acted in direct violation of the Attorney General’s instructions to defend only the denial of FOIA disclosures prohibited by law or involving exemptions. Neither was relevant here.

HHS and NIH have acted like bullies vis-à-vis a disabled ME patient just to be ordered by the Court to do what they should have done more than nine months prior, without a dime spent and without any additional damage to my health: to produce the requested documents. The Court-ordered recent document production was again not FOIA-compliant and my attempts to settle the matter out of Court have generated more government stonewalling and meritless arguments and may leave me no choice than to ask the Court to enforce its orders and/or find he defendants in contempt.

And that, committee members, is what you and patients are up against. A complete disregard for the law and the health of patients by HHS.

Thank you!

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37 Responses to December 2014 CFSAC Comments: HHS’s Complete Disregard for Law and Health of Patients

  1. Brava Jeannette. It also sends an indirect, but very strong ‘we see you’ to those on the committee that are acting in collusion with the NIH.

  2. Ella says:

    I agree with what Siobhan said.

    I heard you, but wanted to read it to get a better understanding (my auditory processing is slow right now).

    I hope they really listened to what you mean, what it means, that they continue to behave in this way. Threatening, perjury, illegal changing of documents – it’s like dealing with the mob or something. I guess that makes sense because it’s bound to be about money, and greed and protection of certain interests seem to run a lot of shows.

    Brava, Jeannette. and thank you, so very much.

  3. Polly says:

    Deplorable conduct by NIH and HHS. In all your efforts, you’ve been strong and brave, a role model for all. Thank you!

  4. Anonymous says:

    Thank-you so much, Jeannette, on behalf of those of us too ill to do the fighting. I am so sorry that their “actions/lack of action” caused deterioration of your health… It would be only fair if they compensated you for that too… 😦 Your efforts are greatly appreciated; more than you know. Take care of yourself and thanks again.

  5. Reblogged this on The Other Side Of The Stretcher and commented:
    Jeannette Burmeister December 2014 CFSAC comments pointing out the disgregard for the law and health of patients aka no regard for authority like defiant children or for human life period!!!!

  6. gg says:

    Yeah, so much for Hope and Change!

    What an Obummer, not that I bought that BS!

  7. Ess says:

    Well said, Jeannette, and thank you! “A complete disregard for the law and the health of patients by HHS.”

    This is a total and utter despicable irony of the very title–HHS–Health and Human Services. What HHS is serving up to the M.E. patient population is anything BUT!!

    HHS is going out of its way inflicting further harm to this patient population–and they know it–so do we! WE are NOT shutting up and we are NOT going away. They owe us our very lives–and we demand our rights to this INjustice!!

    And they–HHS and beyond–are exposing themselves every minute as to what they are doing and to their pre-determined outcome of IOM and P2P. Anything written for the public and media is PROPAGANDA and utter B.S.

  8. Hi Jeannette, what do you mean, HHS has not paid yet? The court ordered them to pay for your lawyers fees. You have asked several times for them about this, and they haven’t answered. What is the next step with that?

  9. Thank you so much for taking the time, money, and energy to fight this fight.

  10. Kathy D. says:

    You’re so good and forging ahead in a principled way to hold the HHS to the court order.
    This whole web of secrecy, actually conspiracy of obstructionism — and worse — is like another
    Pentagon Papers scandal.
    What has happened with your very legal FOIA requests and with violations of federal law uncovered by Jennie Spotila point to deliberate acts by the government agencies to harm the ME?CFS population. It is obstructionism to the nth degree.
    The truth has to come out. This is like a mystery with clues uncovered. I’d like to know who is behind this behavior by HHS? Is there a written policy to stymie any real progress on this disease? Who is calling the shots and what are they saying?
    This is all despite the very real scientific studies coming out about our disease, including Stanford’s, written about so well by David Tuller in the New York Times.
    What will it take for the truth to come out? For the science to be seen and heard? For the HHS and NIH to be exposed publicly?
    I’m wondering if it will take more lawsuits, and how to do that without further endangering anyone’s health.
    This really is a battle.

    • Rivka says:

      “I’d like to know who is behind this behavior by HHS? Is there a written policy to stymie any real progress on this disease? Who is calling the shots and what are they saying?”


  11. Wally says:

    I just wanted to stop by and say THANK YOU for fighting this battle. Girl you rock!
    P.S. I thought you might enjoy this picture –

  12. cbastian2013 says:

    Bullies is the right word and it immediately takes me back to my childhood when bullies were waiting around every corner, every day. In those days schools never interfered. Words can hurt you they said, it will make you stronger, they said. It did not, but that’s another story.
    The problem with bullies is that they think they are untouchable, that they are above the law. The actions of the HHS are a lightning example of that. A public disregard for your rights, disregard for the judge who ordered them to pay and a total disregard for your health.
    I wonder how they can sleep at night.
    I think that most people who read this do not realize it’s their tax dollars that the HHS is playing bully with. Why not more people are enraged about this is beyond me.
    I’m going to have a talk with my congresman again who is on one of the health committees, maybe it doesn’t do much but I can not sit by and let this happen.
    The price you are paying is way to high and you know we are all grateful but that doesn’t take away from the fact that the price, your health, your time with your precious daughter and your lovely Ed, is too high.
    I know the HHS is counting this to be a survival of the fittest and expect you to give up and roll over soon but they don’t know how wrong they are. There is a reason you are one of the top-lawyers and a bull terrier, once you got a hold on something you will not let go or give up. They better start realizing this and save us all a bucket full of tax dollars so that you can start physical recovery of what you have lost.

    Much love,


  13. Rivka says:

    thank you, again, Jeannette, for all your stunning work. you and jennie are rocking my world.

  14. Billie Moore says:

    To Tink: Who is your Congressman, and does he/she understand anything about ME/CFS? If we have friends in Congress, we need to know their names. Thank you.

    Billie Moore

  15. Kathy D. says:

    I think this is much more deep-seated and profound than the HHS acting like bullies. There is a government strategy behind this obstructionism to stymie research, scientific discussion, real treatment, etc. The questions are who is behind it and why. Is it purely to save the government and insurance companies money? That’s bad enough.
    And, of course, they can sleep at night! They don’t care. To ascribe real principles and conviction to these people is giving them many more assets than they have. Bureaucrats are very good at sleeping at night, at ignoring real problems. They push papers, have inane discussions and come to no meaningful conclusions. For many, that is their job.
    Look at the GM executives who ignored the faulty ignition switch which the company knew about and did nothing about until relatives of fatal car accidents brought the crisis into public view and got some politicians to back them. Did the the CEO’s lose sleep? I doubt it.
    I don’t know how any human beings can be like that, but there are some.
    If the federal government does not want to recognize or fund research for ME/CFS, the bureaucrats will find every way to stymie it. That is the cold, honest truth.
    It’s borne out over and over again with the attitude to this disease, the refusal to provide
    documents under FOIA without a court order, and not ignoring the attorney fees’ order. Also,
    much of Jennie Spotila’s revelations show this.
    The question is what can be done now.

  16. Kristine says:

    Hello- I am a patient and want to understand all of this. How and where can I start? I have read about the last 5 articles and comments, but I don’t know what happened in the first place. I may be a help as I am an “old” publicist and have been on disability with ME/CFS for many years. Thank you to whoever can help me out.

  17. Ren says:

    They behave like despots… Thank you, Jeannette.

  18. Liz Willow says:

    It’s about time the non-governmental members of CFSAC recognized what they are up against and how they are being used. HHS rules, period. The agency’s bureaucrats will stack the deck against patients every time they have a chance to do so.

  19. Kathy D. says:

    The question is what do we do now.
    Laura Hillenbrand was on NBC tonight because the new movie has come out, which is
    based on her book “Unbroken.” It was said by Tom Brokaw that she had a terrible illness
    with bad vertigo and exhaustion. She said it later, too. But I was waiting with baited breath
    for her or Brokaw to say she has chronic fatigue syndrome. It would have been such a
    validation for us, said on national TV. But was it said? No. Just a few of her symptoms.
    Why not? This was the right moment, and it would have promoted this disease right
    there, while describing someone who was homebound due to it. What a missed
    opportunity! I felt sick over this. I wonder why she didn’t say it. Was she told not to
    do that or what?

  20. Rivka says:

    i want to recommend that folks read Judy Mikovits’s just-published book. It details the gov’t corruption behind our disease:
    So far there are 15 five star reviews for the book on

    • Ess says:

      Great recommendation, Rivka; I’m just starting to read Judy Mikovits’ book PLAGUE now. I ordered two copies–one for myself and one to lend. ‘The government corruption’ behind our disease of ME/CFS — that is exactly why HHS rammed in IOM and P2P — more cover-up. Yet, wait — it is all coming back ‘full circle’ — and it is time for TRUTH and time to ‘pay the piper.’

  21. Kathy D. says:

    Judy Mikovits’ book sounds worth reading. Maybe someone should review it online and try to get that posted on the blogosphere.
    I see the point about Laura Hillelbrand’s not saying she has ME/CFS, but at this point with all of the government shenanigans about it, that everyone with it, especially the well-known, have an obligation to all of us to say something to help break through the media and government white-out of this disease as legitimate and with a physiological basis. It’s time to do that.

  22. Kathy D. says:

    I’ve read articles by Laura Hillenbrand in the New Yorker, and very well-written ones at that, about her horrific case of ME/CFS, being homebound, having terrible vertigo, etc.
    However, when no medical staff validated her disease, she did have those of us who suffer from it in her corner, understanding, sympathizing, cheering her on.
    I cheered on her book successes, and still do, even though I disagree with her on some things, but it’s important because she has made it in spite of this awful disease. So I support her.
    But we all were for her when the medical profession didn’t get it and were insensitive to her.
    The ME/CFS sufferers and advocates were in her corner.
    I think she should have said something on the program. It would have helped us at a time of
    dysfunctional government committees, government inaction and obstructionism, at least. This
    is a critical time. All help is needed from those who can give it.

  23. Kathy D. says:

    OK, New York Times magazine of 12/21/14 will have an extensive article about Laura Hillenbrand. Much is said about ME/CFS, so this is a breakthrough in another medium.
    So, bravo to her for being upfront and for the NYT covering her health and writing story.
    It all helps us break through the nonscience nonsense and obstructionism by the

  24. libbyboone says:

    As usual, Jeannette — thank you!

  25. Kathy D. says:

    Also, Laura Hillenbrand was on Face the Nation and the interview was very sympathetic to her illness and asked her questions so she could explain about it and she did a good job.
    Happy New Year to you, Jeanette, and hopes for better health and more science and revelations of the truth about our disease — and some improvements in government response.

    • Yes, that was maybe the best interview i have seen her give re our disease. I was glad to see that. But as Dr. Enlander said, it would he so helpful to the field if she pointed out the need for research. So, that is my hope for her next interview.

      Thank you, Kathy. Same to you and all of us.

  26. justinreilly says:

    Thank you for bringing this disgrace to the attention of CFSAC.

  27. Pingback: Another CFSAC FACA Fail: DFO Misconstrues Law | Thoughts About M.E.

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