Jeannette Burmeister

Jeannette Burmeister is patient advocate disabled with myalgic encephalomyelitis. She lives in Incline Village, Nevada, and participates in the Phase III AMP- 511 open-label clinical trial for Ampligen. Her husband, Ed Burmeister, also, advocates for adequate care and treatment for patients of ME.

She is an attorney, 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.

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 HHS and NIH in federal court for violating the Freedom of Information Act (FOIA) for documents relating to the IOM study. "...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."

When Hemispherx Biopharma announced a 267% price hike on Ampligen for its open-label clinical trial participants, Burmeister campaigned to CFSAC and the FDA to investigate.

Talks and Interviews

 * June 16, 2014 Comments at CFSAC meeting
 * January 27, 2014 at IOM Meeting
 * December 2013 Comments on IOM contract
 * December 2012, Jeannette Burmeister's comments to The Advisory Committee Reviewing Ampligen

HHS/CFSAC Testimony

 * CFSAC Public Testimony August, 2015
 * CFSAC Public Testimony January 2015
 * CFSAC Public Testimony December 2014
 * CFSAC Public Testimony December 2013
 * CFSAC Public Testimony 22 May 2013

Online Presence

 * Thoughts About M.E. Blog
 * Twitter
 * LinkedIn

Learn More

 * 2014, How "Chronic Fatigue Syndrome" Obscures A Serious Illness by David Tuller