The "Obama Promise" Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome

[caption id="attachment_13151" align="alignright" width="300"] President Obama responds positively to a request for more federal assistance for chronic fatigue syndrome[/caption]

Bob and Courtney Miller's effort to engage President Obama on behalf of Chronic Fatigue Syndrome patients began in a Town Hall meeting in Reno last year. At that meeting President Obama promised to look into the situation and report back and, now, through his Deputy Chief of Staff, Nancy-Ann DeParle, he has.

The top aid to the White House Chief of Staff, Nancy-Ann DeParle has a long track record with health care; as Director of Health Care Financing for the Clinton administration she helped administer the Medicare and Medicaid programs and then was director of the White House Office of Health Reform for President Obama. A Phi beta kappa and Rhodes scholar, Mrs Deparle was recently included on The New Republic's list of Washington's most powerful and least famous people.

Mrs. DeParle told Courtney that President Obama had never asked her to investigate a specific disorder before. No promises were given regarding funding but President Obama's desire to elevate the priority Chronic Fatigue Syndrome receives at the NIH (in a separate communication to Courtney) was promising.

• Read the letter from President Obama to Courtney here.

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 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 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!"








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​

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CC: courtneymiller999@gmail.com​

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Subject: Thank you for elevating Chronic Fatigue Syndrome​

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Mr. President,​

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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.​

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Sincerely,​

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Name​

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State​

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Years ill​

• For the video of Courtney talking to Pres. Obama go to this blog

View the Post on the Blog

 

I'm not an American so I don't begin to understand what it might mean to have the President's support expressed in this way. I do think however, it could have been worse. He could have ducked out of any answer, but he didn't and it does surely give you some greater recognition. A single question has raised awareness in the White House and that's got to be a good thing. I did laugh when he slipped in the political struggle over funding for research etc. but then he's a politician so I guess that was to be expected

 

Well, this brought tears to my eyes. Obama has my vote for other reasons, but good for him/(the aides) for following up, even if in just this small way. Though I hope and expect more! And THANK YOU Miller family!! I hope we have more opportunities like this! Anyone like to question the Romney camp? :0)

 

As a non-American I wouldn't endorse contacting Romney

 

As a non-American I wouldn't endorse contacting Romney

Yeah. I can already imagine the visions of budget-cuts and benefit-reductions dancing in his head.

 

bit off topic
can't we have a nicer pic of Obama on the front page, as he's being nice to us?

that pic always makes me thinks
a) He's suddenly desperate for the loo
b) he's heard some complete dumbass thing and cannot, because of decorum, do a "face palm" and call the idiot a jerkass and is biting his tongue


...just sayin'!

 

Important question: Does the phrase about two Program Announcements on ME/CFS mean that the NIH will finally launch new ME/CFS programs with clearly allocated funding for ME/CFS? (the thing that they DIDN'T do in connection with the Workshop)

Cort, or Bob or Courtney, could you help me out with this?

 

This is the best piece of news I have had all month!

I hope the upcoming election will not scupper this!

 

Wished Oprah Winfrey still had her show. With the Obama letter she might have invited Mr. And Mrs. Miller. That would have been nice...

 

Sushi Dutch people are asked to send the email through various ways. We love to take part.

 

GN, btw, I love (whoops, I mean best wishes) your SdB quote.

No it doesn't. ME/CFS has had program announcements - which simply list the topics the Feds are interested in - for decades.

 

Thanks I sent a thank-you and put in a paragraph of my own words. I am from Canada and I feel it is just as important for us Canadians to thank him as we are one global community. What ever helps one will help all of us.

Thanks for starting this, and thanks to the Millers too.

 

can't we have a nicer pic of Obama on the front page, as he's being nice to us?

Cort--I agree. Here's a few options to pick from:

 

Is this one too much?

 

Ha! Yeah, superman is a bad idea. They all bit the dust in some tragic ways.

 

Great news! I'd love to see the letter where Obama indicates that he has asked that ME be raised in priority. If the Millers are reading, pls post it if you can. And thank you so very much for all this great work!!

 

I'd love to see the letter where Obama indicates that he has asked that ME be raised in priority.

Read the letter from President Obama to Courtney here.

 

Read the letter from President Obama to Courtney here.

I had read it. Don't see it in there. Cort indicated it was in another communication.

 

I had read it. Don't see it in there. Cort indicated it was in another communication.

You have to click on "Obama letter on CFS" on that page and it comes up as a PDF--though you will have to rotate it to read it easily.

 

My own favorite presidential photo is at : http://blog.jonolan.net/wp-content/uploads/2011/09/obama_unicorn_rainbows.jpg

It's amazing how many results come up googling "obama unicorn"

 

You have to click on "Obama letter on CFS" on that page and it comes up as a PDF--though you will have to rotate it to read it easily.

I had clicked on and read that letter. Obama does not state in that letter that he has asked HHS and NIH to elevate the priority of ME. Cort stated in the article that there is another communication where he did say this. I'd like to see that letter.