Robert Miller

Robert Miller, (Bob), is a ME/CFS patient who advocates for FDA approval of Ampligen for the treatment of ME/CFS. He has been treated with Ampligen since 1999. From 29 January 2013 to 8 February 2013, he undertook a "Hunger Strike for Ampligen Approval for CFS", ingesting only water and receiving saline infusions in order to call attention to the need for government participation in clinical trials that will lead to approval for Ampligen.

In response to the Hunger Strike for Ampligen, Hemispherx Biopharma, the makers of Ampligen, issued a statement saying: “Hemispherx understands the frustration that there is still no FDA-approved treatment for chronic fatigue syndrome and the concern that patients may lose access to Ampligen therapy. Out of concern for the health of the CFS community, Hemispherx has asked any hunger strikes be discontinued and that patients join in a collaborative effort between the FDA, Hemispherx, CFS clinicians and patient advocates to find a solution to this significant unmet medical need.”

When Miller was 24 years old, he came down with flu-like symptoms that steadily worsened. "It took me 17 years before I saw a doctor who said, 'This is what you have,'" he said. A year later, he entered Hemispherx's clinical trial in Reno, Nevada. "All of my lab work was in the toilet," he said, and his immune system operating "at the level of an AIDS patient."

At a 2011 town meeting in Reno with President Barack Obama, Mr. Miller's wife, Courtney 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." The video of Courtney Miller speaking to President Obama

On 26 July 2012, President Obama wrote a follow-up letter to Courtney Miller. Read President Obama's Letter

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 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 in 2012"...[and] "a 2015 letter by leading ME/CFS clinicians and experts urging the federal government to move toward approval of Ampligen."

CFSAC Testimony

 * Jan 2015, Public Testimony before CFSAC meeting 13 January 2015
 * Oct 2012, Public Testimony before CFSAC meeting 4 October 2012
 * Jun 2012, Public Testimony before CFSAC meeting 13 June 2012
 * May 2011, Written Testimony before CFSAC meeting11 May 2011
 * Oct 2010, Testimony before CFSAC meeting 13 October 2010
 * Oct 2009, Testimony before CFSAC meeting 29 October 2009
 * May 2009, Testimony before CFSAC meeting 27 May 2009

Online Presence

 * Hunger Strike For Ampligen Facebook page - an education and advocacy site
 * Robert Miller's YouTube Channel

Learn More

 * 2011, The Obama Promise on Chronic Fatigue Syndrome by Cort Johnson