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.​

​

Sincerely,​

​

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

 

dannybex: You can "right-click" on a MacBook by tapping two fingers on the trackpad. I'm not sure how you do it with a mouse but would think that if you go to System Preferences and click on "mouse", it might have something about "secondary tap" as "right-clicking" is referred to on my MacBook's trackpad tutorial.

Thanks Michelle. I don't have a Macbook, just a regular Imac, but was able to download it into Adobe Acrobat, and rotate the file.

 

This is great. I think a flood of appreciative e-mails would help the president know how many of us are sick and paying attention to what the government is doing about it. So the e-mail goes to these addresses? ​

To: jarrettpublic@who.eop.gov​

CC: courtneymiller999@gmail.com​

 

This is great. I think a flood of appreciative e-mails would help the president know how many of us are sick and paying attention to what the government is doing about it. So the e-mail goes to these addresses? ​

To: jarrettpublic@who.eop.gov​

​

CC: courtneymiller999@gmail.com​

 

Thanks for the addresses and I have done it. It is very exciting!

 

Marg - I think the e-mail goes to those addresses. That's what I was asking.

 

This is great. I think a flood of appreciative e-mails would help the president know how many of us are sick and paying attention to what the government is doing about it. So the e-mail goes to these addresses? ​

To: jarrettpublic@who.eop.gov​

​

CC: courtneymiller999@gmail.com​

You can also send a message to: http://www.whitehouse.gov/contact/submit-questions-and-comments

I did both, cause they are probably counting the numbers.

Sushi

 

Well, as an American, I think our greatest hope of getting funding/ recognition for this illness is to make it a nonpartisan issue; whoever the President turns out to be, he will still need the support of Congress and, less likely for us, the Supreme Court to get his agenda heard and passed. After all, ME/CFS doesn't check to see if you are Democratic, Republican, Independent, Socialist, Libertarian, Freedom and Justice, or part of the Green (or any other) party before it decides to take over your life. If we don't even try to inform other parties of this illness and the impact on our lives, we have less recourse when they try to cut funding for programs that are important to us.

I happen to live in a solidly Democratic state and my Congressional reps have mostly voted the way I would want them to vote in regards to health issues (I have also written and spoken to my local legislative office about ME/CFS) but if people happen to live in an area were their Congressperson is not supporting the issues they want to see supported, they should contact their Congressperson.

And this presidential election looks like a close one for both Republicans and Democrats.

I agree that we need to treat this as a nonpartisan issue and try to inform members of both parties about this disease. Orrin Hatch (R-UT) has been an ally in the Senate and, along with (then Sen. R-PA) Rick Santorum, sent a letter to former HHS Secretary Mike Leavitt asking him to respond to the CFSAC recommendations (to no avail, alas). Even though I'm a Democrat and from a different state, I sent Sen. Hatch a letter thanking him. I do believe it to be true that under the Republican-proposed budget plan funding for NIH sponsored research would be drastically cut.

 

Allyb and I have discussed the idea of sending President Obama a supporting message. Emails are great, but I wonder if a group support card or something like a petition could be good too. We did something like that about Lipkin. Similarly we should be considering asking for a comment from the Republican leadership. This is a disease costing the US and the world a lot of money, and with related diseases the costs would be very much greater - slashing research into this is the same as allowing those costs to escalate. It is very much in our interest, in the interest of the USA, and of the world, for this to be a non-partisan issue if possible.

Bye, Alex

 

Allyb and I have discussed the idea of sending President Obama a supporting message. Emails are great, but I wonder if a group support card or something like a petition could be good too. We did something like that about Lipkin. Similarly we should be considering asking for a comment from the Republican leadership. This is a disease costing the US and the world a lot of money, and with related diseases the costs would be very much greater - slashing research into this is the same as allowing those costs to escalate. It is very much in our interest, in the interest of the USA, and of the world, for this to be a non-partisan issue if possible.

Bye, Alex

Hi Alex,

By group support - what do you mean? A support as far as elections goes? I don't think that that's a good idea.
I don't believe that any citizen would vote for a President on this one issue, even if one has ME/CFS.

I totally agree that this should be a non-partisan issue. We need to reach out to all the government. This disease (or any health issue) has nothing to do with who is in office. Like you stated, it is in the benefit of fiscal efficiency no matter who is in office. i am all for reaching out to the Republicans. How would we go about doing this?

 

No Nielk, I mean appreciation for the acknowledgement and effort, just as in this thread but as a group effort. I am not suggesting anything that is overtly political in the sense of elections. Bye, Alex

 

No Nielk, I mean appreciation for the acknowledgement and effort, just as in this thread but as a group effort. I am not suggesting anything that is overtly political in the sense of elections. Bye, Alex

I like that.

 

President Obama fulfilled promise to Reno woman for chronic fatigue research

http://www.rgj.com/article/20120821...d-promise-Reno-woman-chronic-fatigue-research
7:30 PM Aug 21, 2012
Written by Jaclyn O'Malley

Growing tired of not hearing back from Democratic President Barack Obama on his promise to her that he would investigate federal research initiatives into chronic fatigue syndrome, a Reno woman wrote to the newspaper.

Courtney Miller’s letter, published in a June edition of the Reno Gazette-Journal expressed her disappointment, following Obama’s pledge to her during a 2011 town hall meeting in Reno. She questioned his honor and said all she wanted was a letter informing her of what he learned from the National Institutes of Health.

A few weeks ago, she finally got her letter from Obama.

“It’s a really important letter,” Miller said. “It’s the best way the president could have fulfilled his promise he made to me because it will help move scientific research on this illness.

“He kept his promise, and helped the best he could. By asking the Department of Health and Human Services and National Institutes of Health to raise the priority in this illness, it’s a really, very important step for my family, and other patients.”

To thank Obama, her family attended his speech Tuesday at Truckee Meadows Community College and held up a sign.

Obama wrote in the letter dated July 26 to Miller that he asked what the NIH is doing to find a cure for chronic fatigue syndrome....

Related Links

• President Obama Letter on CFS

 

Also from the above: http://www.rgj.com/article/20120821...d-promise-Reno-woman-chronic-fatigue-research

Robert Miller said he feels Obama’s concern has added to public awareness of his disease and provides a sense of hope for those suffering from the illness. He said he’s aware of many people with CFS who committed suicide.

“There is momentum that the government health agencies are moving forward with the illness, of course not fast enough for those who have been ill for 10 years, 20 years and three decades, but the science is snowballing, and it’s a sign we should not give up hope,” Robert Miller said...

...“Clearly, the president has fulfilled his promise,” he said. “In my eye, I think he truly established that he is a man of character and a man of his word.”Miller added, “I truly believe when the president went back (from Reno) that within a certain amount of time he did what he said he was going to do. To hear from my wife, who made a simple request to move the science so that our sons would be able to have their dad attend baseball games, I think somebody of the intelligence level of the president picked up on her small request.”

 

Thanks Sushi- I sent a letter directly to the white house e-mail you provided, as well.

 

send a message to: http://www.whitehouse.gov/contact/submit-questions-and-comments

I did both, cause they are probably counting the numbers.

Sushi

I want to keep encouraging people to keep sending their thank you letters. They definitely count the numbers on this. AND this is the best opportunity we have had IN A LONG TIME to be heard.

 

btw... What happened to the photo of Obama? I liked having his photo on this thread.

Can you pick another one and post it back up?

 

Thanks so much to the Millers and to Cort for letting us know how to express our thanks to the President. I sent the message via email and the govt. Q&A site. Many, many thanks.

Sarah

 

YAY! Here's the photo I really liked:


:

 

Jennie Spotila analyzes President Obama's response to Courtney and Bob Miller at her blog Occupy CFS: http://www.occupycfs.com/2012/08/22/tale-of-two-letters/

In her concluding paragraphs she says, "It is also critical for the CFS community to recognize that if President Obama loses the election in November, we go back to square one."

 

Jennie Spotila analyzes President Obama's response to Courtney and Bob Miller at her blog Occupy CFS: http://www.occupycfs.com/2012/08/22/tale-of-two-letters/

In her concluding paragraphs she says, "It is also critical for the CFS community to recognize that if President Obama loses the election in November, we go back to square one."

Thanks for posting this Merry.
This is why it's incorrect to think that this is a non-partisan issue because it undeniably is not!

How many other presidents have stepped up to the plate to recognize ME/CFS patients?
The answer to that question is ZERO.

Based on the Republican--Romney/Ryan plan to put "an end to BIG GOVERNMENT," where do you think that will lead?

"Reducing government deficits Mitt Romney's way would mean less money for health care for the poor and disabled and big cuts to nuts-and-bolts functions such as food inspection, border security and education.

Differences over the government's budget and spiraling deficits are among the starkest that separate Republican Romney and Democratic President Barack Obama. Obama's budget generally avoids risk, with minimal cuts to rapidly growing health care programs such as Medicare and Medicaid while socking wealthier people with tax increases. It's all part of an effort to close trillion-dollar-plus deficits." http://www.huffingtonpost.com/2012/04/23/mitt-romney-budget-promises_n_1445368.html