President Obama asks NIH & DHHS to elevate priority of chronic fatigue syndrome

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Becomes first US President ever to request that national health agencies give ME/CFS a higher priority. Thanks are in order.

In April 2011, Courtney Miller, wife of ME/CFS patient Bob Miller, urged President Obama in a Reno Town Hall meeting to ask the NIH to increase funding for chronic fatigue syndrome. At that time the President promised to have NIH “start seeing if they can do more on this particular ailment.” And for the past 17 months, ME/CFS advocates have waged an unrelenting collaborative email campaign asking for some report on the result of that pledge.

Now, President Obama “has thrown in on our side”….

According to the following press release from Bob and Courtney Miller which appeared first on Phoenix Rising (http://PhoenixRising.me), President Obama has shared positive news with them in a recent letter.

_________________

Aug 17, 2012:
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 25, 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 confirm 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!”

Thanking President Obama

We all need to thank President Obama. It is important that the President know that many patients and their families are affected by CFS and that we are grateful for his efforts. We have made it easy for patients and friends to email the White House Office of Public Engagement, with the following model email.

__________________________________

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.

Sincerely,

Name
State
Years ill

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3 thoughts on “President Obama asks NIH & DHHS to elevate priority of chronic fatigue syndrome”

  1. GeekyGranny says:

    Fibromyalgia is a painful debilitating condition that also needs elevation. Wish they had included it as well.

  2. jhampton says:

    Oh, Please…..President Obama….Words….Just Words. I’ll Believe It When I See It! Just wait until “ObamaTaxCare” kicks in! Let’s Pray it will be Repealed before that happends.

  3. denisejasak says:

    So Obama asks NIH to make CFS a priority. In 2008 he first said the words Chronic Fatigue Syndrome. It’s now 2014. Same old , Same old story!!!! Promises, promises! And Nothing new.

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