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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 }

  • peggy-sue August 17, 2012, 11:48 am

    Wow – respect!

  • jeffrez August 17, 2012, 11:53 am

    I love that guy! So grateful to Millers for speaking out. They deserve our thanks and congratulations!

  • Sushi August 17, 2012, 11:53 am

    Great! Sending the email.

    Thanks Courtney for having the courage to initiate and follow up on this, and to Cort for making it easy for us to send this email.

    Note: You might want to remove the italics and highlighting when you paste this into your email.

    Sushi

  • Valentijn August 17, 2012, 12:05 pm

    Amazing! I am and was a big Obama supporter, but I assumed the "I'll look into it" was the typical political brush off. I'm just speechless. And in a good way for a change!

  • Enid August 17, 2012, 12:11 pm

    Great news Cort. With research picking up and now for you in the US what could be better news.

  • CJB August 17, 2012, 12:16 pm

    Wow.

  • Dreambirdie August 17, 2012, 12:28 pm

    Yeah, really WOW.

  • Sushi August 17, 2012, 12:32 pm

    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

  • Rrrr August 17, 2012, 12:36 pm

    thank you to the millers for all their work. please let this be a turning point in our decades of suffering.

  • Merry August 17, 2012, 12:38 pm

    Incredible, wonderful. Thank you, Courtney and Bob Miller. Thank you, Nancy Ann DeParle. Thank you, President Obama. (Of course I'll send an email, too.)

    Oh, and thanks, Cort for the great news.

  • Simon August 17, 2012, 12:38 pm

    Awesome! That's great news, and Obama sounds like he means it.

    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.”

    You can imagine that focusing minds at the NIH, though I guess it very much depends on the election result. Would be great if someone could get Mitt Romney to make the same pledge to ensure the heat stays on regardless.

  • Nielk August 17, 2012, 12:49 pm

    My thanks and utmost respect to the Millers!

    This is advocacy in action. What an accomplishment !

    Thank you.

  • Sasha August 17, 2012, 12:56 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

    I agree – I've amended the text as follows, please feel free to copy (putting your own nationality in instead where I say "British citizen"):

    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 your 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 17 million people worldwide.

    Although I am a British citizen, heightened US research efforts are bound to lead other nations to step up their own research programmes and we can all help each other.

    I am deeply grateful for your efforts.

    I am glad I caught "17 people worldwide" rather than "17 million people worldwide" before I sent it! :whistle:

  • Dreambirdie August 17, 2012, 1:09 pm

    Here's the link to send a message to the White House:
    http://www.whitehouse.gov/contact/submit-questions-and-comments

  • Wally August 17, 2012, 1:18 pm

    Thank you for sharing this information with the MECFS Community and many thanks to Courtney and Robert Miller.

    The drum beat seems to be getting louder and louder from many different fronts. The door is cracked open for voices to be heard from all over the globe. Let's keep the beat going and let them see the sheer volume of people throughout the world who have been effected by this illness. Patients, family, friends and the medical/research community – it will take only a couple of minutes of your time to let your presence be known. The wave has been started, but it needs the crowd to show up for the greatest impact to be felt!

  • Fatima August 17, 2012, 2:40 pm

    Wonderful news! Many thanks to Courtney and Robert and to your president for living up to his promise!

  • camas August 17, 2012, 3:11 pm

    Well, this is a first. Thank you e-mail sent…

  • SpecialK82 August 17, 2012, 3:16 pm

    Absolutely floored!! I have no words. When has a politician ever followed through……..

  • Tally August 17, 2012, 3:52 pm

    This brings hope in better tomorrow. I'm not an American, but this will surely affect us all

  • Sushi August 17, 2012, 3:55 pm

    I also sent a slightly different message to the White House at the link that DB provided–just changed a few words to make sure it got counted.

    Sushi

  • Wally August 17, 2012, 3:59 pm

    I believe it is important for the President of the United States to hear thank you for his willingness to probe further into the issues surrounding this illness.

    I also would urge people to take the time to read the letter that President Obama sent to Courtney Miller. If the President does not have a "crowd" standing up for him to hear their voices, then by default the loudest voice in the room may be coming from the NIH Director, Dr. Francis Collins. Do you want Director Collins to speak for you? Or do you want to join in a collective group of voices who support further investigation, evaluation and recommendations for effectively addressing this illness.

    I am not a Facebook user, but perhaps this form of social media could also be used to put together a ground swell of support to show how the public would like to see the U.S. Government address this illness in a more constructive way than currently envisioned. Just an idea if anyone would like to brainstorm ideas. Short, sweet and to the point is often the best way to start an initial ground swell of support.

  • Cort August 17, 2012, 5:04 pm

    I love that this was the first time the Deputy Chief of Staff was EVER asked to followup at the DHHS on a specfic disease. It could be that Pres. Obama really has a thing with 'unfairness'; with groups of people that he feels are being treated unfairly….Hopefully this and other efforts will coalesce into something really significant happening. My hats off to Bob and Courtney for their perserverance; the right person in the right place at the right time can make a big difference. We'll see how it goes.

  • lnester7 August 17, 2012, 5:25 pm

    Cort can you/someone interview the Deputy Chief of Staff Spoke person to see how he plans to translate this request into practice???

  • K2 for Hope August 17, 2012, 6:34 pm

    I am over-whelmed that we were actually acknowledged! I cannot express enough gratitude, although we will need to continue to help those advocating for us who are unseen.

  • laura August 17, 2012, 6:53 pm

    So incredibly cool!! Thank you to the Millers for fighting for us, and to Cort for keeping us updated.

    Thank you email sent.

  • ggingues August 17, 2012, 6:55 pm

    I hope this leads to something postive, probably will not be in time to save his election. Hopefully Romney will keep any good work going, and stop any crap.

    GG

    PS I sent the email along!

  • WillowJ August 17, 2012, 6:58 pm

    wow! this is really cool! great work to the Millers and all who have reminded public officials of us, and thanks to the President for listening. Not sure how much teeth a directive like that has, but assigning a specific person to follow up sounds promising! Will send an email :)

  • dannybex August 17, 2012, 7:23 pm
    lnester7

    Cort can you/someone interview the Deputy Chief of Staff Spoke person to see how he plans to translate this request into practice???

    I think that's addressed in the letter from the President, although it was kind of hard to read sideways.

    Quite amazing news!

  • CBS August 17, 2012, 8:01 pm
    dannybex

    I think that's addressed in the letter from the President, although it was kind of hard to read sideways.

    You may be able to view the letter as it was written by 'right clicking' on the document and selecting 'rotate clockwise' (shift-control-plus).

    And yes, the letter was very cool. Many thanks to the Millers for their ongoing efforts as well as their seizing the moment.

  • Ember August 17, 2012, 8:17 pm

    Many thanks to Courtney and Bob! Llewellyn King's articles, such as “Obamacare's Silent Constituency,” might also have helped. I hope that Mr. King will report on this news. Especially during “political feeding time,” we should be treating President Obama to the kind of response that Mr. King has been getting all along.

  • JT1024 August 17, 2012, 8:44 pm

    All I can say is I'll believe it when I see it. Of course, the election is close and whoever wins the White House will have to deal with what happens in the Congressional elections.

    Words are just words IMHO. Actions speak louder. If we see true changes and action on the part of the NIH/HHS and the CDC, it will be more than mere words. If we see education of primary care physicians and a coordination of services as have been developed for those with diabetes, cardiac disease, AIDS, ESRD (End Stage Renal Disease), COPD, etc, then progress has been made. If we see changes in disability and insurance coverage, that will also mean something.

    Until those changes are seen, it is merely lip service.

  • Lindseys2525 August 17, 2012, 9:32 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

    I do agree with Sushi, let's ALL respond!!! Power in numbers. We are finally being heard. Thanks for speaking up Courtney. This is such great news!!!

  • Hope123 August 17, 2012, 11:39 pm

    I was and continue to be supporter of President Obama. I think his background gives him a sense of compassion and fairness beyond other politicians I am familiar with.

    However, ME/CFS is a bi (or multi)-partisan issue and I believe it would not hurt to convey our concerns to the Romney campaign as well. So my suggestion is, perhaps in another thread, someone can figure out how to do this that is more familiar with Romney or Ryan. I know a bit about Romney and respect his health plan in Mass; with Ryan, I am concern about what he will do with Medicare since a fair percentage of ME/CFS people have Medicare as their primary insurance.

    Also, not a bad idea to cc your local Congressperson on any notes and ask for their support as well for this initiative.
    FInd you senator here: http://www.senate.gov/general/contact_information/senators_cfm.cfm
    Find your rep here: http://www.house.gov/representatives/find/

    Here are a list of physicians who are currently in Congress:
    http://www.patientsactionnetwork.com/physicians-of-the-112th-congress/

    Jim McDermott used to represent the district where I lived and spoke at my school.

  • urbantravels August 17, 2012, 11:49 pm

    The Deputy Chief of Staff for Policy referred to is a woman – Nancy-Ann DeParle. There may be a way to unearth an email address for her although it doesn't look like the White House is just giving it out:

    http://www.whitehouse.gov/administration/staff/nancy-ann-deparle

    Cort might be able to get her through the White House press office for an interview.

  • Valentijn August 18, 2012, 12:04 am
  • Marlène August 18, 2012, 12:56 am

    The first step is made. Don't stop :)

  • dannybex August 18, 2012, 1:32 am
    CBS

    You may be able to view the letter as it was written by 'right clicking' on the document and selecting 'rotate clockwise' (shift-control-plus).

    Thanks Shane. Unfortunately with a Mac, or at least my mac, there's no right or left click. But I can probably download it and put import it into photoshop(?) and then rotate it. :)

  • dannybex August 18, 2012, 1:36 am
    JT1024

    Words are just words IMHO. Actions speak louder. If we see true changes and action on the part of the NIH/HHS and the CDC, it will be more than mere words…

    …Until those changes are seen, it is merely lip service.

    While I'm sure a lot of us can relate to your skepticism, actions have already occurred. The promise, the 'words', were spoken a year ago, the action or actions have taken place during the past month or months.

    It's a start, and a lot more 'action', especially at that level, than we've ever seen before.

  • Snow Leopard August 18, 2012, 1:41 am
    JT1024

    Words are just words IMHO. Actions speak louder. If we see true changes and action on the part of the NIH/HHS and the CDC, it will be more than mere words.

    Agreed, but the main point is this gives us leverage – we can say, the President said… 'And what have you done to meet that?'… To the NIH…

  • Firestormm August 18, 2012, 1:58 am

    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 :)

  • HTree August 18, 2012, 2:52 am

    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)

  • Firestormm August 18, 2012, 4:14 am

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

  • Valentijn August 18, 2012, 4:57 am
    Firestormm

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

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

  • SilverbladeTE August 18, 2012, 7:21 am

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

    [​IMG]

    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'! 😉

  • Emma August 18, 2012, 7:27 am

    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?

  • Battery Muncher August 18, 2012, 9:04 am

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

    I hope the upcoming election will not scupper this!

  • Spring August 18, 2012, 10:40 am

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

  • Spring August 18, 2012, 10:51 am

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

  • Cort August 18, 2012, 11:34 am
    fingers

    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.

  • cruzgirl August 18, 2012, 12:05 pm

    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.