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.
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.
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​


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Comments

Darn, Obama was just doing a live Q&A on reddit. I missed it. Would have been great to ask what he's going to do about the 4 million Americans sick with CFS.
 
I apologize for starting trouble with my post at #99.
Merry, I don't think you started trouble, I think you brought some important points. We are a large diverse group of people, there will be political differences. I don't think anyone has been disrespectful. The important thing, imho, is that while we honor our differences, we also recognize the plain bare facts regardless of whether it is in line with other political feelings/thoughts we may have.

Stating the obvious, we all want to feel better !
Many who are sick, will want to support whoever they feel will be in the best position to help further CFS/ME research- period. It may or may not agree w/ their feelings about other political issues.
However, some may feel that in the grand scheme of things their other political beliefs, that are not in sync with what may be best for the CFS/ME research agenda, take priority.
And that's ok. That's why we each get a vote. But please, let's not pretend that there are not major differences in party agendas when it comes to health care spending. Blinders won't help anyone.
 
From an "outsider" perspective, I'm willing to bet that Obama will be re-elected. The key is the swing/irregular voters and I suspect they'll vote for Obama.

In my opinion, many of the problems with the US political process are not necessarily due to the leaders available, but the system itself. I daresay the current system is not what the founders would have imagined when the country reached a population of over 300 million.
 
Merry, I don't think you started trouble, I think you brought some important points.
beaker, I appreciate your response, but I respect Nielk, who works hard to advocate on behalf of the ME/CFS community, and I am worried about how distressed she sounds. A few days ago I started a private conversation with her about the discussion of politics on PR, and she wrote back, but, I'm sorry to say that, when I started that conversation, I was more scatterbrained than usual and I ran out of brain power before I asked her specifically about her posts in this thread, and I have yet to get back to her. So I can't say I know for sure why she objects to people expressing political views in this thread.

As an advocate Nielk must know how hard it is to get people to work together and get anything done. Perhaps she fears the consequences of partianship. But I shouldn't attempt to speak for her.
 
I think that our common goal is to have the best health care possible. We would like health coverage to be available for everyone. We would like as much government funding as possible for CFS.

President Obama took a step towards the right direction both with Obamacare and with his letter of intention to put emphasis towards funding for CFS. This is to be applauded.

I am wary to take that to another level and tell people to vote for Obama in 2012.

I think that things, especially politics are not black and white. As a matter of fact, it is mostly murky. Election promises are known to be broken. Even if a President would like to push legislation, they are dependent on Congress. Furthermore, I believe that voting for a President is so much more than just looking at one issue.
 
My opinion of this event is simply that it's very good in terms of public relations for our community worldwide. Now we can say "The American President showed interest in ME/CFS" as well as "The Norwegian government apologised to ME/CFS patients" and this is invaluable. Just my opinion :)
 
I think it is important for us to realize where the two parties stand on the future of both research and quality of life for CFS patients.

The GOP not only won't give us much needed care and research improvements, they want to dismantle what little help there is now.

The Republican policies being proposed right now would completely gut any chance for additional funding for CFS, and we may even see the 6 million dollar number decrease. That ruins our chances of ever finding a cure or better treatments. They do not support the social security disability benefits many of us receive and depend on for food and rent. And they want to end Medicare, which many of us depend on for what little medical care we can receive. A 6,000 dollar voucher to find health insurance for someone who has been chronically sick for years is beyond useless.

Asking the GOP to invest in CFS is really a lost cause when they've pledged to dismantle every avenue that would allow them to do that. It's really unrealistic.

We don't need to start a political discussion but it would be good for people with CFS to know what they are getting when they vote in November. I don't understand how anyone with CFS could vote Republican regardless of how you stand on the other issues. I'm wiliing to bet that CFS is the most important issue in all of our lives right now.

I know politics isn't black and white, but with regard to how the two parties will affect the future of CFS, it is VERY black and white.
 
Frankly, I'm having trouble wading thought the Democrats vs. Republicans stuff here. Why isn't the discussion on what we can do to take advantage of Obama's announcement. We already have a thread elsewhere for bickering about which party is better.
 
It's not about Democrats vs Republicans. It's about the future of CFS. The policies we vote for have an effect on CFS and the policies being proposed this election have a clear impact on the future of CFS.

We have a choice in November between a candidate who has just been more vocal about supporting CFS than any politician or public official in history. And has a policy platform that could lead to additional funding for research, better medical care and more support. And the other choice is a candidate who vows to dismantle every possible avenue for medical and societal support for CFS patients, guaranteeing we will actually see less care, less research and less support.

It's not a game, I'm not spinning things here. It's just the facts. If you are interested in advocacy, supporting the policies Obama supports is an important step for advocating for CFS. The GOP platform does not support our needs. Voting for Mit Romney in this election is voting for less research, less care, less support for people with chronic illnesses.

If you disagree with Obama on other issues, that's a different discussion and a choice you'll have to make and a discussion we should have elsewhere. But as far as who is better for CFS, there is no debate, it's very clear.
 
REPORT: ROMNEY/RYAN PLAN WILL COST 60K MORE FOR MEDICARE

"The Romney/Ryan proposal to transform Medicare’s guaranteed benefit into a “premium support” structure for future retirees could increase costs by almost $60,000 for seniors reaching the age of 65 in 2023, a new report from the Center for American Progress finds. Current seniors would also have to pay more for preventive, hospital, and physician services should Romney and Ryan repeal the Affordable Care Act, facing an increase in health spending of between $7,900 and $18,600 over the course of their retirement."


THIS IS JUST ONE REASON why politics affects people with ME/CFS.

medicarechart_0.png



http://www.google.com/imgres?imgurl=http://crooksandliars.com/files/vfs/2012/08/medicarechart_0.png&imgrefurl=http://crooksandliars.com/susie-madrak/report-romneyryan-plan-will-cost-60k-&usg=__i8ApC3N6hpOYvIna-H5OKZMIROc=&h=433&w=336&sz=36&hl=en&start=1&zoom=1&tbnid=wbuzxtBw27l4tM:&tbnh=126&tbnw=98&ei=xLk_UMqhK6WqiAKql4GoDw&prev=/search?q=Romney+Ryan+liars&um=1&hl=en&client=safari&rls=en&tbm=isch&um=1&itbs=1
 
It's not about Democrats vs Republicans. It's about the future of CFS. The policies we vote for have an effect on CFS and the policies being proposed this election have a clear impact on the future of CFS.

We have a choice in November between a candidate who has just been more vocal about supporting CFS than any politician or public official in history. And has a policy platform that could lead to additional funding for research, better medical care and more support. And the other choice is a candidate who vows to dismantle every possible avenue for medical and societal support for CFS patients, guaranteeing we will actually see less care, less research and less support.

It's not a game, I'm not spinning things here. It's just the facts. If you are interested in advocacy, supporting the policies Obama supports is an important step for advocating for CFS. The GOP platform does not support our needs. Voting for Mit Romney in this election is voting for less research, less care, less support for people with chronic illnesses.

If you disagree with Obama on other issues, that's a different discussion and a choice you'll have to make and a discussion we should have elsewhere. But as far as who is better for CFS, there is no debate, it's very clear.
Lets review this in a few years, see what the reality really is!

GG
 
REPORT: ROMNEY/RYAN PLAN WILL COST 60K MORE FOR MEDICARE

"The Romney/Ryan proposal to transform Medicare’s guaranteed benefit into a “premium support” structure for future retirees could increase costs by almost $60,000 for seniors reaching the age of 65 in 2023, a new report from the Center for American Progress finds. Current seniors would also have to pay more for preventive, hospital, and physician services should Romney and Ryan repeal the Affordable Care Act, facing an increase in health spending of between $7,900 and $18,600 over the course of their retirement."


THIS IS JUST ONE REASON why politics affects people with ME/CFS.

View attachment 3754


http://www.google.com/imgres?imgurl=http://crooksandliars.com/files/vfs/2012/08/medicarechart_0.png&imgrefurl=http://crooksandliars.com/susie-madrak/report-romneyryan-plan-will-cost-60k-&usg=__i8ApC3N6hpOYvIna-H5OKZMIROc=&h=433&w=336&sz=36&hl=en&start=1&zoom=1&tbnid=wbuzxtBw27l4tM:&tbnh=126&tbnw=98&ei=xLk_UMqhK6WqiAKql4GoDw&prev=/search?q=Romney+Ryan+liars&um=1&hl=en&client=safari&rls=en&tbm=isch&um=1&itbs=1
Well at least this wasn't from a biased source. LOL See my previous comment.

GG

PS My understanding is that most of the baby boomers have the wealth, not my generation and younger, so it would seem that they should pay their "fair share." Also, they are reaping benefits many times over what they paid in, simply unsustainable. Progressives are still for sustainability, right? Be interesting to see if this house of cards falls on his watch? I'm not in any better position than anyone else on this thread, so if/when the S*** hits the fan, I'll be screwed like Millions of others. Thats' what we get for killing the golden goose. Time to pay the piper?
 
Government is the best source of funding for CFS research. The GOP wants no government. Good luck getting corporations to fund CFS research.
 
Government is the best source of funding for CFS research. The GOP wants no government. Good luck getting corporations to fund CFS research.
The GOP is very much like the Dems. They both know that money is power and control, so why would they want to shrink or have no gov't? Bush created a whole new bureaucracy, (DHS), nice try but not falling for NO gov't. Where do you get your information? Only anarchist want no gov't, try not to fall for the scare tactics.

GG

PS Good luck getting the gov't to fund CFS at an adequate level! And good luck with your failing state. Dem controlled for ages, How's that working for you?
 
After reading a news story about ME, I was googling, trying to find where President Obama told the HHS and NIH to elevate the priority of ME/CFS. All that searching lead me to here. After reading all of this story, the comments and the referenced letter, I am left with the same unanswered question: When did President Obama tell the HHS and NIH to elevate the priority of ME/CFS?

John
 
In my opinion, many of the problems with the US political process are not necessarily due to the leaders available, but the system itself. I daresay the current system is not what the founders would have imagined when the country reached a population of over 300 million.
I think its more than that. I think our constitutions (and by that I mean all countries) are written for a steam powered era. No internet, no mega-corporations, no mass marketing, no public relations companies, no over-population, no global pollution, etc. We are governed by systems that are woefully out of touch with reality. This has nothing to do with party politics, its the political and social infrastructure. Its also so very complex now, designing better constitutions, governance structures etc. is going to be a nightmare. Until then we live with hodgepodge governance systems, woefully unable to deal with issues.
 
After reading a news story about ME, I was googling, trying to find where President Obama told the HHS and NIH to elevate the priority of ME/CFS. All that searching lead me to here. After reading all of this story, the comments and the referenced letter, I am left with the same unanswered question: When did President Obama tell the HHS and NIH to elevate the priority of ME/CFS?
@JohnBit - I don't have the references/links, but some of the promises/commitments President Obama made came after he was approached by Courtney Miller (Bob Miller's wife) at a press conference. Bob Miller is a patient and advocate for this illness and he has been very active in trying to get the FDA to approve Ampligen. If you are having trouble finding any links that might provide you more background information about this subject, you might try contacting Bob or his wife directly. I am guessing that he might be a member here or perhaps he has a Facebook account.