View the Post on the Blog[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.
From Bob and Courtney Miller
- Read the letter from President Obama to Courtney here.
"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.
Subject: Thank you for elevating Chronic Fatigue SyndromeMr. 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,NameStateYears ill
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The "Obama Promise" Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome
- Thread starter Phoenix Rising Team
- Start date
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.
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.
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.
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.
I think that's addressed in the letter from the President, although it was kind of hard to read sideways.
Quite amazing news!
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.
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.
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.
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.
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!!!
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.
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.
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.
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.
I left a response using the form at http://www.whitehouse.gov/contact/submit-questions-and-comments/ope 
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.
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...