Robert Miller

Source:phoenixrising

Robert Miller (Bob Miller) is a former labor organizer who advocates for FDA approval of Ampligen while living with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). He has been treated off and on with Ampligen since 1999.

Hunger strike for Ampligen

From January 29, 2013 to February 8, 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.”

Illness Onset

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."

Town meeting with President Obama

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." See video of Courtney Miller speaking to President Obama

On July 26, 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." Read President Obama's Letter

Awards

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.

Appeal to NIH for a clinical trial for Ampligen

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."

CFSAC Testimony

• May 2009, Testimony before CFSAC meeting May 27, 2009
• Oct 2009, Testimony before CFSAC meeting October 29, 2009
• Oct 2010, Testimony before CFSAC meeting October 13, 2010
• May 2011, Written Testimony before CFSAC meeting, May 11, 2011
• Jun 2012, Public Testimony before CFSAC meeting June 13, 2012
• Oct 2012, Public Testimony before CFSAC meeting October 4, 2012
• Jan 2015, Public Testimony before CFSAC meeting January 13, 2015

Questions to NIH during Advocacy Call

• Nov 2, 2016, NIH ME/CFS Advocacy Call with Dr. Walter Koroshetz, Dr. Vicky Whittemore, Dr. Joseph Breen, and Dr. Avindra Nath - Recorded call and Transcript During the question and answer session, Miller challenges Dr. Koroshetz's "bottom-up" philosophy to funding and recruiting new researchers. He requests in increase in funding to attract more experienced researchers and for the NINDS to do a clinical trial of Ampligen.

Online presence

• 2013, Taking Fundraising for ME/CFS Research to New Heights - Gunnar Gottschalk and Robert Miller skydive to raise funds for Simmaron Research
• 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

See chronic fatigue syndrome.

See myalgic encephalomyelitis.

See National Institutes of Health.

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.

double blinded trial A clinical trial is double blinded if neither the participants nor the researchers know which treatment group they are allocated to until after the results are interpreted. This reduces bias. (Learn more: www.nottingham.ac.uk)

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.

See Chronic fatigue syndrome advisory committee.