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Jeannette Burmeister
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[[File:Jeannette Burmeister.png|thumb|Source:www.me-cvsvereniging.nl]] '''Jeannette Burmeister''' is an attorney and a patient advocate living with [[myalgic encephalomyelitis]] ([[myalgic encephalomyelitis|ME]]). She lives in [[1984 Incline Village chronic fatigue syndrome outbreak | Incline Village]], Nevada, and participates in the Phase III AMP- 511 open-label clinical trial for [[Ampligen]].<ref>http://www.sfgate.com/health/article/Chronic-fatigue-patients-frustrated-with-FDA-4283890.php#photo-4202976</ref> Her husband, [[Ed Burmeister]], also, advocates for adequate care and treatment for patients of [[myalgic encephalomyelitis|ME]]. She is licensed to practice law in California and Germany. Before she was stricken with ME, she practiced law at Baker & McKenzie LLP, the world’s largest law firm.<ref>https://thoughtsaboutme.com/about/</ref> Burmeister blogs about issues in the ME community at ''[[Thoughts About M.E.]]''. Topics tend to be about the politics of ME in the US and UK government agencies. She successfully sued the [[U.S. Department of Health and Human Services]] and the [[National Institutes of Health]] in federal court for violating the Freedom of Information Act (FOIA) for documents relating to the 2015 [[Institute of Medicine]] study on [[ME/CFS]]. "...the Judge found the agencies’ conduct to be unreasonable to a degree that led him to order both agencies to pay all of my attorneys’ fees, more than $139,000. The award of attorneys’ fees is by no means a given in FOIA cases; it requires a high level of unreasonableness on the government’s part." <ref>https://thoughtsaboutme.com/2015/09/08/holding-hhs-accountable-for-unrelenting-and-unrepentant-legal-violations/</ref> When [[Hemispherx Biopharma]] announced a 267% price hike on [[Ampligen]] for its open-label clinical trial participants, Burmeister campaigned to [[Chronic Fatigue Syndrome Advisory Committee]] and the [[U.S. Food and Drug Administration]] to investigate. ==Talks and interviews== *Dec 2012, [https://thoughtsaboutme.com/2012/12/05/you-can-make-a-difference-ampligen-approval-within-reach-with-your-help/ Jeannette Burmeister's comments to The Advisory Committee Reviewing Ampligen] *Decr 2013, [https://www.youtube.com/watch?v=GBbZCz6U4ng Comments on IOM contract] *Jan 2014, [https://www.youtube.com/watch?v=09HSYoQVAGc Video of Jeannette Burmeister's comments at IOM meeting] :[https://thoughtsaboutme.com/2014/01/30/jeannette-burmeisters-iom-meeting-comments/ Transcript of comments at IOM Meeting] *Jun 16, 2014, [https://www.google.com/search?q=jeannette+burmeister&ie=utf-8&oe=utf-8#q=jeannette+burmeister&start=10 Comments at CFSAC meeting] ==HHS/CFSAC Testimony== *[http://www.hhs.gov/advcomcfs/meetings/presentations/2015-08-public-comment-burmeister.html CFSAC Public Testimony August, 2015] *[http://www.hhs.gov/advcomcfs/meetings/2015-01-public-comment-jeannette-burmeister.pdf CFSAC Public Testimony January 2015] *[http://www.hhs.gov/advcomcfs/meetings/presentations/1214-jeannette-burmeister.pdf CFSAC Public Testimony December 2014] *[https://wayback.archive-it.org/3919/20140324193121/http://www.hhs.gov/advcomcfs/meetings/presentations/jeanette-burmeister.pdf CFSAC Public Testimony December 2013] *[https://wayback.archive-it.org/3919/20140324193151/http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony-20130522-burmeister.pdf CFSAC Public Testimony 22 May 2013] ==Online presence== :[https://thoughtsaboutme.com/ Thoughts About M.E. Blog] :[https://twitter.com/JKBurmeister?lang=en Twitter] :[https://www.linkedin.com/in/jeannetteketterleburmeister LinkedIn] ==Learn more== *2014, [https://www.buzzfeed.com/davidtuller/chronic-fatigue-syndrome?utm_term=.cbR18j2vz#.ylnb05A4r How "Chronic Fatigue Syndrome" Obscures A Serious Illness] by [[David Tuller]] ==References== {{Reflist}} [[Category:People with ME, CFS, and/or FMS]] [[Category:Advocates or allies]] [[Category:American advocates or allies]][[Category:Attorneys]]
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