White House Responds to ME/CFS Advocate

Obama1-300x215In April 2011, Courtney Miller asked President Barack Obama a question about funding levels for CFS research. She made the request on behalf of her husband, Robert, and their two sons. Robert has CFS and he has been a staunch and visible advocate for a stronger federal research effort. President Obama replied,

“Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it. But based on the story that you told me, 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.”

For more than a year, Courtney and Robert made persistent requests for follow-up from White House staff. In mid-July, their efforts paid off. Personal contact from White House deputy chief of staff for policy, Nancy-Ann DeParle, was followed by a two-page letter from President Obama. Ms. DeParle told the couple that the president asked the National Institutes of Health to elevate the priority of CFS. The letter provides an update on recent efforts at NIH and by the Department of Health and Human Services to encourage research. In it, Mr. Obama states that he has asked Nancy-Ann to “stay in touch with Dr. [Francis] Collins at NIH and Dr. [Howard] Koh at HHS about my interest in their efforts on CFS.” Click this link to view the letter: Letter from President Obama.

The Millers have asked fellow advocates to express their thanks to President Obama for his recognition of CFS. They offer this short text as an example to those who wish to follow-up:

To:  jarrettpublic@who.eop.gov

CC: courtneymiller999@gmail.com

Subject:  Thank you for elevating Chronic Fatigue Syndrome

Mr. President,

I want to thank you for asking the Department of Health and Human Services and the National Institutes of Health to elevate Chronic Fatigue Syndrome in priority. I believe that a serious effort by our federal research institutes can produce the science that will restore my life. I am certain your leadership will be a turning point in the ME/CFS health crisis affecting more than a million Americans, and I am deeply grateful for your efforts.




Years ill

Cort Johnson at Phoenix Rising was the first to share the news of the letter through an Aug. 17, 2012 blog post. Journalist Llewellyn King who has championed the cause on his weekly public affairs program, “White House Chronicle,” wrote an article about the White House response to the Millers that was carried by several news agencies, including the Indiana Gazette.

On Aug. 21, the Millers attended President Obama’s speech at a community college near Reno. Courtney held up a sign to express her thanks for the letter she had received from the president and for Ms. DeParle’s assurance that President Obama intended to raise the priority CFS is given by the federal health agencies. The story was covered in the Reno Gazette-Journal.

Reno’s NBC affiliate, KRNV, interviewed the Millers at their home and broadcast their story on Aug. 26: http://bit.ly/PmwdKz

August 21, 2012
  • And here we are, nearly 6 years later and what has changed at the NIH or HHS in their funding or attitudes toward our disease? Per the recent RFA’s, virtually nothing: http://occupyme.net/2017/01/15/rfa-ticker-11617/

    We’re still getting $5 per patient PER YEAR allotted to research this disease: 10s to 100s of times less research funding than other, less common diseases…

    Lip service is great for politicians and public meetings – insulting and incredibly harmful to those suffering and dying from this disease (as well as to those – typically family members – caring for people with this disease)…