Jeannette Burmeister is an attorney and a patient advocate living with myalgic encephalomyelitis (ME). 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 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 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." 
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[edit | edit source]
- Dec 2012, Jeannette Burmeister's comments to The Advisory Committee Reviewing Ampligen
- Decr 2013, Comments on IOM contract
- Jan 2014, Video of Jeannette Burmeister's comments at IOM meeting
- Jun 16, 2014, Comments at CFSAC meeting
HHS/CFSAC Testimony[edit | edit source]
- 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[edit | edit source]
Learn more[edit | edit source]
References[edit | edit source]
phase three - Last phase of clinical trials before a drug can be approved for public use. Whereas Phase one assesses basic safety, and Phase two assesses basic efficacy, Phase three uses many trial participants to fully assess both safety and efficacy, and overall benefit/risk.
myalgic encephalomyelitis (ME) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.
Chronic Fatigue Syndrome Advisory Committee (CFSAC) - (sometimes pronounced SIF-SACK) A US government advisory council that met twice per year, covering current topics related to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Meetings usually lasted for two days and the results were presented to the Secretary of Health and Human Services (HHS). After 15 years, on September 5, 2018, CFSAC's charter was not renewed by the Department of HHS, effectively dissolving the committee without notice or warning.