IOM Meeting January 27, 2014
In-Person Comments by Jeannette Burmeister
Hello. I’m Jeannette Burmeister and I’m an attorney.
I’ve heard some people at HHS are confused about patients’ deeply-felt opposition to your project. Let me explain in simple terms why:
- HHS hijacked the federal CFSAC recommendation and ignored an unprecedented and impassioned request by 50 international M.E. experts to cease and desist
- The majority on your committee are non-experts. Insanity!
- HHS insured bio-medical research will be not be funded or replicated and yet ordered an evidence-based review. You are hurtling down the psychological rabbit hole, repeating the Gulf War Illness anti-science debacle.
- HHS hired an institution without experience or authority to develop case definitions.
- An excellent case definition, based on science, already exists and the experts endorsed it.
- The IOM has a fatal organizational conflict of interest. I have filed a complaint with the Office of the Inspector General. A formal investigation is under way.
- HHS has broken federal law as to FOIA compliance. 2.5 weeks ago, I filed a lawsuit against HHS and NIH in U.S. district court.
- To circumvent competition rules, HHS moved from seeking a standalone contract to issuing a task order without a clear scope, violating umbrella contract terms.
- HHS issued misleading statements about the nature and terms of, and parties to, the contract.
- And finally, hundreds of thousands of patients’ lives were ruined or ended by a federal consensus definition in 1994. We have long memories. Patients are furious and alienated by what can only be called state-sponsored bullying.
Given your time frame and the meager “budget-dust” sum provided to you, not even a thorough literature review is possible. Do you really expect anyone to consider the definition you produce to be science-based? Everything about this is lose-lose.
You may attempt to serve as oracle of the biased and obstructive NIH/CDC, but your conclusions will be rendered meaningless soon enough. Academic scientists are closing in on the cause of this disease. In due time, your consensus “fairy dust” will be headed for Ripley’s “Believe It Or Not”—next to the entries about the earth being flat and the sun revolving around the earth.
My husband, who is an attorney with the world’s largest law firm, and I will not hesitate to bring additional lawsuits. We are supported by thousands of patients who are ready to fight you at every step, in federal court and in the court of public opinion.
The following are comments I had initially planned on giving, but I completely rewrote them the day before the meeting and gave the comments above instead. But the original comments have some additional points, so I’ll post them here, too:
My name is Jeannette Burmeister. I am a patient and I am here to oppose this IOM study in the strongest possible way.
Please know that nothing I have to say is in any way personal to any of you.
For patients, this is the fight of our lives and if this sounds overly dramatic to you, then this may indicate that you are not fully aware of the irreparable harm you are about to do. I respectfully suggest that you research the disgraceful IOM history with Gulf War Illness. Because if there is one thing I am sure of, it is the fact that this committee will psychiatrize this disease by endorsing antidepressants, psychotherapy and exercise, as the IOM did for Gulf War Illness. Your report is a foregone conclusion given the IOM’s issued opinions about our disease in the past, which create an organizational conflict of interest that is currently the subject of a formal investigation by the Office of the Inspector General.
I am sure you eight non-expert panel members are all accomplished in your area of expertise. I am not questioning that, but I am reminding you that you are not experts in THIS disease. The Gulf War Illness committee members probably had similarly impressive credentials and good intentions, but we’ve seen the disastrous results of their efforts. The foremost experts for this disease have stated that this effort will harm patients. And yet, here you are, not having treated a single patient with this disease or researched the disease in any meaningful way or in any way at all. This is not a purely intellectual exercise. It has taken the experts decades to accumulate their expertise by treating and researching this disease and you are not going to become experts capable of producing an accurate definition by reading about this extremely complex and very unique disease for a bit more than a year in your spare time. What you have been asked to do is simply not feasible to do competently no matter how much you might want to believe it is or how good your intentions are.
I’d like to suggest to ALL committee members that you are being played. This study is a set-up because it is designed as an “evidence-based” review. HHS knows full well that replication studies of bio-medical research of this physical disease are basically non-existent in the absence of government funds for them, whereas research (quote, unquote) of the alleged psychological aspects or of coping mechanisms abounds thanks to HHS funding. For example, ask yourselves why Dr. Unger of the CDC is kicking and screaming resisting a 2-day exercise test, despite overwhelmingly strong research by Staci Stevens and Dr. Chris Snell establishing the test as a very reliable biomarker. I bet some of you have never even heard of Stevens and Snell. That right there should give you pause.
I am asking you to go home tonight and really think about whether you could live with yourselves if you did to us what the IOM has done to Gulf War veterans. Because if you go forward, you will be accomplices in a process designed to do just that and it WILL stay on your conscience for the rest of your lives. Patients are watching and we WILL hold you accountable if you proceed down this path. Do the right thing and refuse to be part of this diabolic plan to, once and for all, bury this disease and its patients.
Incredibly well said!
BANG ON, Jeannette–you know WELL of what you speak. Thank you for also sharing your message with your initial comments–and YES, WE are ready to FIGHT TOGETHER at EVERY step of the way AGAINST this ongoing INjustice — ‘we DO mean business’ — you can count on that!!
Interestingly, and timely, last night my specialist Internist doc that I see for ME/CFS held a ‘Family and Friends’ Night’–his RESOUNDING message to the crowded auditorium at the hospital was–ME/CFS IS REAL, it is DISABLING–it is NOT psychiatric–and that many doctors are MISinformed and/or DISregard this disease. He is in the process of EDUCATING them!!!!! I was happy that my family and I could attend–this was my first outing in the month of January–in recovery from all the extra activity that Christmas brings.
Soooo, ‘powers that be’ out there–we have MUCH to fight for–in wanting our LIVES BACK from this horrid disease of ME/CFS that you would rather BURY us in–and we are MORE THAN MOTIVATED to fight for our lives!!! I daresay — you would do the same . . . !!!
Great comment, Jeannette! Clear and brief. You hit the nail on the head. Thank you very much for all your efforts!
Perhaps this one line from your closing statement will get the attention of those perpetrating this horrendous, illegal action: “Patients are watching and we WILL hold you accountable if you proceed down this path.”
Thank you Jeannette!
Watched it. LOVED it! Concise, assertive. Drove it home! Perfect! If some govt & IOM there weren’t already visibly nervous, I bet they are now!
Jeannette, This was brilliant, brilliant, brilliant! Loved it!
Jeanette, you are our Norma Rae, Erin Brockovich!! We needed this argument delivered with passion and ANGER! What I would give to see their response to your speech…Hopefully their mouths were agape.
Amazingly done. I wish that more would read your original comments. Please submit your original comments into their “Public Access File”. They are required to keep all submissions on record there. Video, audio, or written.
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Watched it also, Jeannette. You were so concise and hit the NAIL on the HEAD! Thank you so much for your being a frontrunner for all ME/CFS patients (of which my courageous daughter is one).
Dear Ms. Burmeister,
Thank you for elaborating to HHS on your reasons for filing in CA Federal District Court. Though not an attorney, I concur with your well-stated points. Good luck and let us know if we can be of help to the case.
I have been a patient advocate for years now and my current goal is to have ME taught (FINALLY) in our medical universities. Dr. Elizabeth Unger who is over chronic illnesses at the CDC is in charge of curriculum development which must then be approved by the American Association of Medical Universities. I’m shocked to go to my own Medical College of Georgia in Augusta and find not a single MD who is the least bit knowledgeable about current and ongoing research and findings regarding this devastating illness. Their favorite quote: “It does not fall within the scope of my/our practice” which also indicates that a specialty must be designated in the near future as well as the education of current practitioners in the diagnosis and treatment of the over one million patients. Primary Care Physicians currently in practice will need to be mandated to learn how to at least recognize and provide a provisional diagnosis and referral to the designated specialist. We do have a long way to go but I can see that we are making some headway. Finally.
Again, my thanks for your efforts and the use of your personal knowledge base as an attorney to head up this particular battle regarding the dismissal of the IOM and the acceptance of the criteria developed in Canada. Put another way, YOU GO, GIRL!!!!! KEEP SLAMMING THEM!!!
Marcie Butler Myers, BSN, North Augusta, SC, firstname.lastname@example.org
Jeanette: Do you know why Facebook delated all postings of the the Buzzfeed article from it’s site? I heard it had to do with it being “offensive”? WTF???
Pam, check out my latest blog post.
Jeannette, when you have time and feel up to it, I wanted to let you know I sent you a conversation message on Phoenix Rising. Thanks – best, Ren
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Jeannette, your taped comment and your written comment, were both brilliant, moving and at the same time (for those savvy enough to grasp the undertone) unnerving in a wonderful way, as they should be! If M.E. patients could all rise up from our beds and get in line behind you and your husband Edward to march on the HHS I’m sure we would…your speeches are so compelling and full of the truth of our wretched situation. (I see that there is a “share this” button – so can we share on our FB pages while referring back to your blog? or do you prefer that this remain here?)
Thank you, Jackie! 🙂
Pls share away, on FB or elsewhere.