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

Posted by Cort Johnson

President Obama responds positively to a request for more federal assistance for chronic fatigue syndrome

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.

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

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


____________________________________________________________

Check out the video of Courtney speaking to the President last year

Quickly zoom the video up to 46:50….

 

{ 159 comments… add one }

  • Dreambirdie August 18, 2012, 12:32 pm
    SilverbladeTE

    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:

    [​IMG]

    [​IMG]

    [​IMG]

  • CJB August 18, 2012, 12:50 pm

    Is this one too much?

  • Dreambirdie August 18, 2012, 12:54 pm

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

  • justinreilly August 18, 2012, 1:20 pm

    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!!

  • Ember August 18, 2012, 1:24 pm
    justinreilly

    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.

  • justinreilly August 18, 2012, 1:29 pm
    Ember

    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.

  • Sushi August 18, 2012, 1:32 pm
    justinreilly

    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.

  • Valentijn August 18, 2012, 1:38 pm

    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" 😛

  • justinreilly August 18, 2012, 2:13 pm
    Sushi

    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.

  • Firestormm August 18, 2012, 2:33 pm

    He did. And so would I :)

    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.

  • justinreilly August 18, 2012, 3:18 pm

    It did make me happy to see the term "ME/CFS" above the President's signature. WE PATIENTS are changing not only the political climate (hopefully) around ME but also the nomenclature of the disease. Please, everyone keep using ME not "CFS" and eventually we will see the disease being referred to by its proper name by everyone, including CDC, at some point. Every time you say "ME" brings that day closer!

  • snowathlete August 18, 2012, 4:07 pm

    Impressive, frankly.

  • August59 August 18, 2012, 5:34 pm

    I'm impressed that it was followed through on. I really anticipate seeing what the impact of this really does. Alot I hope!!!!!

  • Hope123 August 18, 2012, 6:46 pm
    Firestormm

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

    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.

  • Michelle August 18, 2012, 7:01 pm

    Have to agree with JT1024 on this one. All I could think of as I read the letter was SHOW ME THE MONEY! While it's a bit impressive that he really did follow up on Courtney's question (albeit a year later when the election campaign was in full gear — is he so desperate he's got to reach out for the ME/CFS vote? Ah to be the courted swing vote in this election!), I saw nothing in the letter that suggests a change from the status quo. Indeed I saw no appreciation for or reference to how little NIH spends on ME/CFS vis a vis other illnesses, or even compared to the cost to the national economy per Courtney's original question to him.

    That said, thousands of patients flooding the White House inbox to underscore the funding discrepancy and our desperation couldn't hurt. Who knows? Maybe we could get Obama and Romney falling over themselves to get our vote. 😉 (One can dream…)

    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.

    (Ugh. I can't believe it's taken me an hour to type this.)

  • Marg August 18, 2012, 10:11 pm

    I love it!

  • ThatBloke August 18, 2012, 10:30 pm

    This is wonderful news! Can't get much higher recognition than from the President of the USA.
    The benefit will not only be in the increased funding for research etc, but the increased recognition of MECFS.

    A quick scan of the net reveals that the mainstream media such as newspapers and TV have not yet reported this story.

    Now is the time for all MECFS organizations and individuals to be pumping out press releases and emails to point this story out to the media so the word gets out. Once the story is more than a few days old, they will not be interested in it.

    Even local newspapers etc will be interested in this story if they can have contact with a local MECFS sufferer to "hang the story on", so get in touch with your local paper or TV station now to let them know how much this means.

    The more this promise is out there in wider public view, the more pressure there is on the President, NIH and CDC to follow through on it.

  • lancelot August 19, 2012, 3:08 am

    God Bless President Obama!

    ❤OBAMA❤

    4 MORE YEARS!!!

    :-)

  • MishMash August 19, 2012, 3:28 am

    The last time I smoked marijuana was about 30 years ago in college. I tried it about ten times total. I mostly felt paranoia, and didn't get any of the supposed euphoria or sleepiness other folks talked about.

    But from what I've read, they have developed strains of cannabis that can treat all kinds of symptoms. Some of them work very well for insomnia and pain. At this point I would definitely be interested, if it were legal.

    But of course, our President, the ex-pot smoker extraordinaire, feels it in his authority to throw those in jail who did exactly as he did when he was young. If President Obama would fulfill has campaign promise of butting out of our lives, and stop being nanny in chief, I would feel like my vote wasn't being wasted.

  • Firestormm August 19, 2012, 3:47 am
    MishMash

    The last time I smoked marijuana was about 30 years ago in college. I tried it about ten times total. I mostly felt paranoia, and didn't get any of the supposed euphoria or sleepiness other folks talked about.

    But from what I've read, they have developed strains of cannabis that can treat all kinds of symptoms. Some of them work very well for insomnia and pain. At this point I would definitely be interested, if it were legal.

    But of course, our President, the ex-pot smoker extraordinaire, feels it in his authority to throw those in jail who did exactly as he did when he was young. If President Obama would fulfill has campaign promise of butting out of our lives, and stop being nanny in chief, I would feel like my vote wasn't being wasted.

    Soooo…. you're not believing el presidente's conviction then Mish? Or you think we should all smoke pot? :)

  • pollycbr125 August 19, 2012, 5:32 am

    am I missing something read obama me/cfs letter cannot see where he says to elevate the priority of ME. ?

  • Firestormm August 19, 2012, 6:54 am

    It was referred to as a separate communication Polly. See my post above #61 and Cort's opening remarks.

  • Dreambirdie August 19, 2012, 2:39 pm

    Here's an article by Llewellyn King (Obama Responds on Chronic Illness):
    http://www.indianagazette.com/b_opinions/article_75b181eb-bd88-5fe4-bc90-f7b09f869ffd.html

  • Ember August 19, 2012, 2:56 pm
    Dreambirdie

    Here's an article by Llewellyn King (Obama Responds on Chronic Illness):
    http://www.indianagazette.com/b_opinions/article_75b181eb-bd88-5fe4-bc90-f7b09f869ffd.html

    “Obama has some new friends.” And what better friend do we have than Llewellyn King?

  • Dreambirdie August 19, 2012, 2:58 pm

    I've started a new forum group to support the progressive causes and Obama.
    here is the link:http://forums.phoenixrising.me/inde…-and-radical-independents-wme.30/group-detail

  • urbantravels August 19, 2012, 3:32 pm

    Further notes: if you've downloaded the pdf and can't read it because it's sideways, go to View—>Rotate View—>Clockwise in Adobe Reader.

    Is there a reason why this letter, dated back in July, is being made public at this particular time? A Friday afternoon news release is notoriously the time when a story is least likely to get covered. I thought that this was a deliberate Friday news dump until I realized it wasn't an official news release from the WH, just the Millers' letter being made public.

  • Anne August 20, 2012, 7:57 am

    I have this West Wing image in my head of the President's staff walking along corridors talking really fast – about ME/CFS…! :-)

    So who would White House Chief of Staff, Nancy-Ann DeParle, be? Josh??

  • CJB August 20, 2012, 9:04 am

    I think she's a Deputy CoS – I envision her as "CJ", obviously!

  • Eliza August 20, 2012, 12:24 pm
    Sushi

    To members not in the US: I think it might be great if you also wanted to send this email, amending it to fit your situation, indicating something like that the world notes what is happening in the US–even if it doesn't directly affect you.

    Sushi

    Sent an email a few minutes ago (I'm from Belgium).
    If I were a US citizen, I would have voted for him from the beginning and would have kept voting for him. He's genuin. And he proves it by keeping his promiss to Mrs Miller. And I assume he has to make promisses every day to many many people …
    So whatever this might change or might not change regarding NIH policy and funding for CFS research, he gave us a little ray of hope again … and that deserves a bit of gratitude.
    Now keeping our fingers crossed that NIH, CDC etc. got a wake-up call … finally …
    This is not only important for US patients but for patients all over the world.

  • dannybex August 20, 2012, 5:00 pm
    Michelle

    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. :)

  • LiveAgain August 20, 2012, 5:10 pm
    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?
  • Marg August 20, 2012, 5:12 pm
    LiveAgain
    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?
  • Marg August 20, 2012, 5:12 pm

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

  • LiveAgain August 20, 2012, 5:14 pm

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

  • Sushi August 20, 2012, 5:36 pm
    LiveAgain
    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?

    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

  • ixchelkali August 20, 2012, 5:47 pm
    Hope123

    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.

  • alex3619 August 21, 2012, 4:32 am

    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

  • Nielk August 21, 2012, 6:05 am
    alex3619

    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?

  • alex3619 August 21, 2012, 6:13 am

    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

  • Nielk August 21, 2012, 6:15 am
    alex3619

    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.:thumbsup:

  • Ember August 22, 2012, 1:25 am

    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

  • Firestormm August 22, 2012, 5:54 am

    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.”

  • LiveAgain August 22, 2012, 5:29 pm

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

  • Dreambirdie August 22, 2012, 5:54 pm
    Sushi

    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.

  • Dreambirdie August 22, 2012, 9:43 pm

    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?

  • robinsonsb August 24, 2012, 2:24 pm

    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

  • Dreambirdie August 24, 2012, 2:45 pm

    YAY! Here's the photo I really liked:

    :View attachment 3719

  • Merry August 26, 2012, 1:43 pm

    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."

  • Dreambirdie August 26, 2012, 2:16 pm
    Merry

    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. :thumbsup:
    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

  • Dreambirdie August 26, 2012, 2:41 pm

    PS And if you want to know more about the MANY differences between Obama and Romney, take a peek at the political thread. http://forums.phoenixrising.me/index.php?threads/what-are-your-political-leanings.18947/page-23

    Contrary to rumor, we really don't bite. :rolleyes: