daily life

Obama Keeps Promise on Chronic Fatigue Syndrome Funding

Karen Lee Richards Health Guide August 21, 2012
  • In March, I shared a video with you in which Courtney Miller, wife of ME/CFS patient Bob Miller, stood up at a Town Hall meeting in Reno, Nevada a year earlier and asked President Obama to help her family by asking the National Institutes of Health (NIH) to increase funding for chronic fatigue syndrome.

     

    At the time, the president said, “...what I promise I will do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and start seeing if they can do more on this particular ailment.” For the past 17 months, ME/CFS advocates have waged an ongoing e-mail campaign asking for a report on the result of his promise. Now we finally have that report in the form of a letter from President Obama to Courtney Miller.

     

    From Bob and Courtney Miller...

     

    In an unprecedented step, President Obama has asked the National Institutes of Health and the Department of Health and Human Services to elevate Chronic Fatigue Syndrome in priority, assigning his Deputy Chief of Staff to follow their efforts. When President Obama promised Courtney Miller to 'see if they could do more' for CFS research at a Reno Town Hall meeting last year, he was the first U.S. President to say the words Chronic Fatigue Syndrome. Now he has lived up to his promise, becoming the first president ever to ask the nation’s health agencies to elevate the priority of CFS! Thank you, President Obama!

     

    In a July 26, 2012 letter addressed to Mrs. Miller, President Obama describes a report given him by Dr. Francis Collins, Director of the National Institutes of Health. The important part of the letter is the last paragraph which speaks to the future: he has asked his 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 interest in their efforts on CFS.' Mrs. Miller’s communications with the White House confirms that the president’s wish to have CFS elevated in priority in the Department of Health and NIH has been conveyed at the highest level.

     

    'President Obama kept his promise in the most important way he can for CFS/ME patients,' said Courtney Miller, 'by leading a stronger federal commitment to CFS/ME research and a better quality of life for patients. CFS is a health crisis for more than 1 million Americans, and President Obama has thrown in on our side!'”

     

    Read the Letter

     

    If you would like to read a copy of the actual letter President Obama sent to Courtney Miller, you can download it here: Letter from President Obama

     

    Thank President Obama

     

    The Millers have asked the ME/CFS community to let the president know how much we appreciate his efforts on our behalf by sending him a thank-you note. You can write your own letter or use the e-mail model they have provided below.

     

    To: jarrettpublic@who.eop.gov
    CC: courtneyalexander999@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.
    Sincerely,
    Name
    State
    Years ill

     

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    Source:

    Johnson, C. “The 'Obama promise' fulfilled: Obama requests NIH elevate priority of chronic fatigue syndrome.” Phoenix Rising (2012, August 17).