This is what Jeannette Burmeister said:
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 thoroughliterature 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.