Courtney Miller
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.[1]
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."[2] 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."[3]
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.[4]
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.[5] 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."[6]
Talks and interviews[edit | edit source]
- 2012, ME/CFS Alert Episode 33 - Interview with Courtney Miller
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]
- ↑ http://simmaronresearch.com/staff-board/
- ↑ https://www.youtube.com/watch?v=U2IFtkXofss&list=FL3eYGvobC9QNaqCArAWToWw
- ↑ http://phoenixrising.me/wp-content/uploads/President-Obama-Letter-on-CFS.pdf
- ↑ http://www.prohealth.com/library/showArticle.cfm?libid=18073&site=articles
- ↑ https://www.nih.gov/research-training/medical-research-initiatives/mecfs/nih-requested-comments-me/cfs-research-efforts
- ↑ https://www.nih.gov/sites/default/files/research-training/initiatives/mecfs/rfi-responses-patients.pdf
