Courtney Alexander Miller, is a member of the Board of Directors and an online writer at Simmaron Research, a non-profit organization based in Incline Village, Nevada, which works to advance translational science in treating neuroimmune diseases like CFS/ME.
Advocacy work[edit | edit source]
While advocating for her husband, Robert Miller, who lives with ME/CFS, she spoke to President Barack Obama at a 2011 town meeting in Reno. Miller asked that the President encourage more scientific research for ME/CFS. The President stated: "I will confess to you that, although I had heard of CFS, I don't have expertise in it.... what I promise I will do when I get back is I will have the National Institutes of Health explain to me what they're currently doing and start seeing if they can do more on this particular ailment."See video of Courtney Miller speaking to President Obama
On 26 July 2012, President Obama wrote a follow-up letter to Courtney Miller, reporting that he had "asked Dr. Francis S. Collins, M.D., Ph.D., the director of NIH for a status report on what NIH is doing to find a cure for CFS... I have asked [Deputy Chief of Staff for Policy,] Nancy-Ann [DeParle] to stay in touch with Dr. Collins at NIH and Dr. Koh at HHS about my interests in CFS."
Awards[edit | edit source]
ProHealth honored both Robert and Courtney Miller with its first ME/CFS Advocates of the Year Award in May 2013, citing their ongoing work to recruit public officials to join them in championing for ME/CFS research. Some of the influential people they've engaged in conversation on behalf of ME/CFS are: President Obama, Vice-President Biden, Director of the NIH Dr. Frances Collins, Assistant Secretary of Health Howard Koh, CDC CFS Chief Dr. Elizabeth Unger, and Senate Majority Leader Harry Reid.
Ampligen advocacy[edit | edit source]
In May 2016, the Trans-NIH ME/CFS Working Group published a Request for Information (RFI) seeking the public’s input on needs, opportunities and strategies for ME/CFS research and research training. Robert and Courtney Miller wrote that the: "NIH should immediately fund a small, well-powered clinical trial to demonstrate efficacy of Ampligen for treatment of ME/CFS patients or a subset thereof, soliciting applications in 2016 from clinicians experienced in treating patients with Ampligen. The trial should be double-blind, placebo-controlled, demonstrating efficacy and characterizing responders." The RFI was co-signed by several other ME/CFS advocacy groups and included an attachment of "a sampling of 800 email testimonies appealing to the FDA to approve Ampligen"...[and] a 2015 letter by leading ME/CFS clinicians and experts urging the federal government to move toward approval of Ampligen."
Talks and interviews[edit | edit source]
CFSAC testimony[edit | edit source]
- Oct 2012, Written Public Testimony before CFSAC meeting Includes copy of President Barack Obama's letter
FDA Advisory Committee Hearing testimony[edit | edit source]
- Dec 20, 2012, Testimony of Courtney Alexander Miller
Online presence[edit | edit source]
- Courtney Miller speaking to President Obama at 2011 Reno town meeting about CFS
- Articles by Courtney Miller in Simmaron Research
References[edit | edit source]
chronic fatigue syndrome (CFS) - A controversial term, invented by the U.S. Centers for Disease Control, that generally refers to a collection of symptoms as “fatigue”. There have been multiple attempts to come up with a set of diagnostic criteria to define this term, but few of those diagnostic criteria are currently in use. Previous attempts to define this term include the Fukuda criteria and the Oxford criteria. Some view the term as a useful diagnostic category for people with long-term fatigue of unexplained origin. Others view the term as a derogatory term borne out of animus towards patients. Some view the term as a synonym of myalgic encephalomyelitis, while others view myalgic encephalomyelitis as a distinct disease.
National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.
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.