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

August 17, 2012

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

{ 159 comments… read them below or add one }

SilverbladeTE August 26, 2012 at 3:05 pm

Pardon the politics but it is important
all indications suggest Romney may seriously push for war with Iran
see who he's gathering, who he was talking to and what he said etc.

So, if you do vote for him in that case PLEASE write letters to him/congressmen etc for ME research and against war, except in case of actual unwarranted attack by Iran.

War with Iran will wreck economies because gas prices will skyrocket like nothing you've seen since the Oil Crisis in the 1970s (hope folks here cna remember it)
Conflict with Iran will close the Straight of Hormuz, reducing grealty oil traffic.
Speculators will then drive oil prices crazy high.
$20+ a gallon of petrol spikes of maybe $100 if it goes bad.

I know quite well US military capability, doesn't matter.
Iran is not Iraq. Go talk to, read up on/listen to military analysis of such, including by US (especially naval)
Good chance such war will bring down the entire world economy, way it is just now, at minimum it will completely undo all work to repair damage/issues since the banking mess.
So we in ME/CFS community will be utterly screwed.

Old Salt August 26, 2012 at 4:37 pm


ixchelkali

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.

Old Salt August 26, 2012 at 4:39 pm

Cutting funding for medical research is evil! Regardless of the excuse.

Nielk August 27, 2012 at 6:33 am

Why does this have to turn into a whole political rant?

Have the Republicans been approached at all about this subject?

Although I am very grateful to President Obama for showing his interest in ME/CFS, after more than a year and a lot of insistence from the Millers this is what the President offered:


I have asked [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.

Have the Republicans been approached at all about this subject?

To be fair to both parties, I would say that after the Republicans are approached about this issues, in public, on television and constantly reminded about it, for over a year and if it is right before an election I would wait to see what they do before I throw them in front of a bus.

Lou August 27, 2012 at 9:00 am


Nielk

Why does this have to turn into a whole political rant?

Have the Republicans been approached at all about this subject?

Although I am very grateful to President Obama for showing his interest in ME/CFS, after more than a year and a lot of insistence from the Millers this is what the President offered:

Have the Republicans been approached at all about this subject?

To be fair to both parties, I would say that after the Republicans are approached about this issues, in public, on television and constantly reminded about it, for over a year and if it is right before an election I would wait to see what they do before I throw them in front of a bus.

Lou August 27, 2012 at 9:03 am


Given the Republicans track record the much more likely occurrance is their bus running over us.

CJB August 27, 2012 at 10:10 am


Nielk

Why does this have to turn into a whole political rant?

Have the Republicans been approached at all about this subject?

Although I am very grateful to President Obama for showing his interest in ME/CFS, after more than a year and a lot of insistence from the Millers this is what the President offered:

Have the Republicans been approached at all about this subject?

To be fair to both parties, I would say that after the Republicans are approached about this issues, in public, on television and constantly reminded about it, for over a year and if it is right before an election I would wait to see what they do before I throw them in front of a bus.

Since advocacy efforts have been going on as long as I've been sick, spanning several administrations and parties in power, I'd say everyone has been approached many times. That's why there is such a response. President Obama is the first to even acknowledge the disease or say it out loud.

Dreambirdie August 27, 2012 at 11:05 am


Lou

Given the Republicans track record the much more likely occurrance is their bus running over us.

YES, you can't argue with REALITY. The Republican platform is ALL ABOUT cuts to social benefit programs, and cuts to medical research for people like us.

Sushi August 27, 2012 at 1:43 pm

Video coverage of Robert Miller and his family talking about CFS and Obama's response on Reno TV:

http://www.mynews4.com/news/local/s…n-Chronic-Fatigue/FGH9Q_lVT06HkM5cVaS8_A.cspx

Dreambirdie August 27, 2012 at 5:46 pm

From the above video:

"We spend less than $6 million for NIH research on this illness and I’m asking you for my husband and my kids who want their father to be able to go to their baseball games if there’s a way to make improvements in that," Courtney Miller asked the President.

"Based on the story that you told me what I promise to do when I get back is I will have the National Institute of Health explain to me what they’re currently doing and see if they can do more on this particular ailment," President Obama replied back in 2011.

And that was a promise Courtney says the President kept in a letter he wrote last month.

In the letter Obama says he found the NIH has increased research spending for CFS 31-percent.

The President wrote he also wants to stay updated in the research of the disease.

A small triumph for this Reno family."

Nielk August 28, 2012 at 5:45 am


Lou

Given the Republicans track record the much more likely occurrance is their bus running over us.

I don't want to discuss Politics. All I'm saying is that we would be better served keeping this a non-partisan issue.

baccarat August 28, 2012 at 9:25 am

Let's wait and see. Promises are cheap, especially when elections are around the corner…

Dreambirdie August 28, 2012 at 10:24 am


Nielk

I don't want to discuss Politics. All I'm saying is that we would be better served keeping this a non-partisan issue.

No, I do not think we will not be better served if we pretend it is a non-partisan issue, because the truth is that it IS absolutely both a political and a partisan issue. This thread, after all, is about OBAMA'S PROMISE FULFILLED and like it or not he is a Democrat, not a Republican. If you don't want to discuss the politics involved in this, that is your prerogative, but please don't try to silence others who do.

Nielk August 29, 2012 at 5:27 am


Dreambirdie

No, I do not think we will not be better served if we pretend it is a non-partisan issue, because the truth is that it IS absolutely both a political and a partisan issue. This thread, after all, is about OBAMA'S PROMISE FULFILLED and like it or not he is a Democrat, not a Republican. If you don't want to discuss the politics involved in this, that is your prerogative, but please don't try to silence others who do.

I have so many difficulties with this statement that I don't know where to start.

1- In what way am I silencing others with my post?
2- It says "O'bama's promise" not the "Democrat's promise".
Just because the President is a democrat does not mean that everything he does or works for is a singular Democrat idea. Plenty of issues are bi-partisan – which is as it should be.
3- The President is not discussing party policy here. He is not even discussing health policy. No mention of overall health spending here.
4- Let's look at the "pure facts" here. The President has asked the NIH to look at the allocation of spending on CFS research.
5- I am as happy as anyone else here that he has done so. As a matter of fact, I have contributed in letter writing and petition signing toward that goal.
6- I would be just as happy if ANY President would do so.
7-By saying that it is a partisan issue, you are running the risk of losing it all if president Obama is not elected.
8- I am not willing to do that.
9- Do you really believe that the NIH will allocate funding to CFS based on which party is in office?
10- Would you have made this statement if it was not right before an election?

beaker August 29, 2012 at 6:23 am


Nielk

I have so many difficulties with her statement that I don't know where to start.

1- In what way am I silencing others with my post?
2- It says "O'bama's promise" not the "Democrat's promise".
Just because the President is a democrat does not mean that everything he does or works for is a singular Democrat idea. Plenty of issues are bi-partisan – which is as it should be.
3- The President is not discussing party policy here. He is not even discussing health policy. No mention of overall health spending here.
4- Let's look at the "pure facts" here. The President has asked the NIH to look at the allocation of spending on CFS research.
5- I am as happy as anyone else here that he has done so. As a matter of fact, I have contributed in letter writing and petition signing toward that goal.
6- I would be just as happy if ANY President would do so.
7-By saying that it is a partisan issue, you are running the risk of losing it all if president Obama is not elected.
8- I am not willing to do that.
9- Do you really believe that the NIH will allocate funding to CFS based on which party is in office?
10- Would you have made this statement if it was not right before an election?

It seems you missed a big chunk of his letter. He did bring up health spending on research. The President also expressed it as a partisan political issue in his letter. (and sadly, I'm afraid it is true) I quote from the second to last paragraph of his letter :

"Finally, I should also note that — as I am sure you know – we are engaged in a debated in Washington about the appropriate level of funding for research at NIH and other important government services such as funding for education and clean energy. If the House Republican budget were to be enacted, the Office of Management and Budget (OMB) estimates that the number of new grants from the NIH for promising research projects would shrink by more than 1,600 in 2014 and by over 16,000 over a decade, potentially curtailing or slowing research to find a cure for Alzheimer's disease, cancer, and CFS. I will continue of fight to cut the deficit and build a stronger economy through balanced deficit reduction that asks all Americans to shoulder their responsibility and pay their fair share of taxes, cuts spending , and invests in area critical to job creation, innovation , and growth. But you should know that this is an area of considerable disagreement between my Administration and many Republicans in Congress. "
___________

my eyes are crossing a bit so I enlarged the font for easier reading/typing for me. I hope it is ok for others to read.

CJB August 29, 2012 at 10:06 am


Nielk

I have so many difficulties with this statement that I don't know where to start.

1- In what way am I silencing others with my post?
2- It says "O'bama's promise" not the "Democrat's promise".
Just because the President is a democrat does not mean that everything he does or works for is a singular Democrat idea. Plenty of issues are bi-partisan – which is as it should be.
3- The President is not discussing party policy here. He is not even discussing health policy. No mention of overall health spending here.
4- Let's look at the "pure facts" here. The President has asked the NIH to look at the allocation of spending on CFS research.
5- I am as happy as anyone else here that he has done so. As a matter of fact, I have contributed in letter writing and petition signing toward that goal.
6- I would be just as happy if ANY President would do so.
7-By saying that it is a partisan issue, you are running the risk of losing it all if president Obama is not elected.
8- I am not willing to do that.
9- Do you really believe that the NIH will allocate funding to CFS based on which party is in office?
10- Would you have made this statement if it was not right before an election?

I'm afraid that the Republicans want to shrink the government until it's small enough to drown in a bathtub. They will cut funding for everything but the military.

The first thing George Bush did when he got into office was sign an executive order banning federal money from being spent on stem cell research except for a very small, select number of cell lines. President Obama reversed that when he was elected.

There are very fundamental differences.

My personal belief that if the Republicans gain the presidency, we do risk losing it all. The fact that an election is looming makes it all the more urgent that we get the issues out in the open.

Thank you for sharing your opinions. I know these issues are difficult for a lot of us, but they are vitally important.

Dreambirdie August 29, 2012 at 10:09 am


Nielk

7-By saying that it is a partisan issue, you are running the risk of losing it all if president Obama is not elected.

YES, and that is exactly why it is a political issue.

I refer you back to Merry's post #99, on the preceeding page (my red bold):

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."

Andrew August 29, 2012 at 11:11 am

I have not been able to be as active here as I used to be, so I'm sort of late to this discussion. I also can't read the whole thread. But I'd like to add something because here's what I see. Whoever it was who is supposed to touch bases with the NIH will simply be told that the NIH doesn't have any more money. They will be told they are doing all they can. It would help if this person could be informed that in the last 10 years the NIH budget has nearly doubled, while ME/CFS funding was reduced so much it is now at the bottom. The centers for excellence were closed, and the experts on CFS were removed from the funding review committees. And so the only reason there is no more money is because they cut ME/CFS funding despite budget increases.

I'm willing to email this information if someone can tell me exactly who to send it to. I don't have the mental stamina to sniff this out myself. Or, feel free to take what I said and send it yourself.

Merry August 29, 2012 at 3:57 pm

I apologize for starting trouble with my post at #99.

Whit August 29, 2012 at 4:13 pm

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.

beaker August 30, 2012 at 12:24 am


Merry

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.

Snow Leopard August 30, 2012 at 3:35 am

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 August 30, 2012 at 6:57 am


beaker

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.

Nielk August 30, 2012 at 7:48 am

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.

silicon August 30, 2012 at 7:59 am

It might perhaps be a tactical mistake for the ME/CFS community to become aligned or identified with a specific political party.

Purple August 30, 2012 at 10:58 am

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 :)

Whit August 30, 2012 at 11:36 am

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.

Andrew August 30, 2012 at 12:20 pm

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.

Whit August 30, 2012 at 12:45 pm

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.

Dreambirdie August 30, 2012 at 1:11 pm

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

mezombie January 15, 2013 at 3:55 pm

Nancy-Ann DeParle has resigned from her position in the White House. So much for the "Obama Promise".

http://www.foxnews.com/politics/201…ng-white-house-to-join-brookings-think-tanks/

waiting January 15, 2013 at 4:33 pm


mezombie

Nancy-Ann DeParle has resigned from her position in the White House. So much for the "Obama Promise".

http://www.foxnews.com/politics/201…ng-white-house-to-join-brookings-think-tanks/

That is a big blow. I hope she has well-briefed her successor. I also hope the Millers are able to remain in touch with the administration… maybe they will comment on this change.

ggingues January 15, 2013 at 10:13 pm


Whit

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

ggingues January 15, 2013 at 10:21 pm


Dreambirdie

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?

Whit January 16, 2013 at 2:18 am

Government is the best source of funding for CFS research. The GOP wants no government. Good luck getting corporations to fund CFS research.

ggingues January 16, 2013 at 3:41 pm


Whit

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?

JohnBit February 6, 2014 at 2:03 am

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

alex3619 February 6, 2014 at 4:06 am


Snow Leopard

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.

Wally February 6, 2014 at 9:50 am


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.

JohnBit February 6, 2014 at 1:29 pm


Wally

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.

I guess this confirms what I've come to believe; President Obama never told HHS or NIH to elevate the priority of ME/CFS.

Wally February 7, 2014 at 1:15 pm

JohnBit,

Perhaps Bob or Courtney Miller are just not available at the moment. I am pretty sure I remember someone saying that the President had tasked someone within his White House Staff to follow-up on the ME/CFS issue. Not sure who said this ???, but I vaguely remember that the person he assigned to this task was a woman and she had some previous experience with healthcare issue oversight. Sorry that's all my brain can remember at the moment.

Wally

Firestormm February 7, 2014 at 2:13 pm

@JohnBit You might be able to contact Bob HERE. He wrote this campaign and published it only yesterday calling once again for the FDA to approve Ampligen on Cort's blog.

JohnBit February 7, 2014 at 2:21 pm

I wish it were that Bob were just unavailable, but I know for a fact that that is not the case. I've been probing for answers from him since his last FB post in early January, as have others.

Firestormm February 7, 2014 at 2:26 pm


JohnBit

I wish it were that Bob were just unavailable, but I know for a fact that that is not the case. I've been probing for answers from him since his last FB post in early January, as have others.

Well why not ask Cort your question? If you ask it on that blog I referred you to from yesterday, chances are someone will recall if/when a formal response was made I should think. I also seem to remember confirmation from some official source that something had been done following Obama's promise: but can't point you in the right direction either I am afraid. As for Ampligen – well personally I wasn't as positive about it as others clearly are. But that's just me of course.

Sushi February 7, 2014 at 6:29 pm


Wally

JohnBit,

Perhaps Bob or Courtney Miller are just not available at the moment. I am pretty sure I remember someone saying that the President had tasked someone within his White House Staff to follow-up on the ME/CFS issue. Not sure who said this ???, but I vaguely remember that the person he assigned to this task was a woman and she had some previous experience with healthcare issue oversight. Sorry that's all my brain can remember at the moment.

Wally

@JohnBit

Yes, a woman staffer was tasked with this. There will be posts about this. You could try the google site search under Resources here–it is much better than the PR search engine at the top.

Bob Miller is a member here–BobM. That is not confidential he signs his posts with his full name. You could also try contacting him here.

Sushi

Wally February 7, 2014 at 8:58 pm

@JohnBit. Found this while I was out collecting information for another project. Hope this answers at least part of your question.

Wally

See conversation at the 47 minute mark.

Wally February 7, 2014 at 9:04 pm


Wally

@JohnBit. Found this while I was out collecting information for another project. Hope this answers at least part of your question.

Wally

See conversation at the 47 minute mark.

Here is more information from the Phoenix Rising Archives.
http://phoenixrising.me/archives/13145

(Edit – It looks like the individual that Obama tasked to look into the ME/CFS issue, raised by Courtney Miller in the video posted above, left her position with the White House in January 2013, http://en.wikipedia.org/wiki/Nancy-Ann_DeParle and http://www.healthcarefinancenews.com/news/aca-architect-returns-private-equity.

I guess a question that could be asked is whether she completed the task that the President gave to her and if she did not who else has been assigned to takeover this task?)

Wally February 7, 2014 at 9:33 pm

Looks like Nancy Ann DeParle is willing to talk publicly about her past experience working at the White House. Perhaps she would also be willing to discuss what she was tasked to do with ME/CFS and if there is someone currently on the White House Staff still handling this assignment.
See, http://www.firstreportnow.com/artic…health-reform-discusses-affordable-care-act-0

I will follow up on this one if no one else desires to do so and/or there has been no other follow up (that anyone is aware of or chooses to share) with the White House to inquire how the monitoring of the "high priority status" of this issue is going.

JohnBit February 7, 2014 at 10:24 pm

So this then is the president's promise to elevate the priority of Chronic Fatigue Syndrome.

"I will have the National Institute of Health explain to me what they're currently doing and start seeing if they can do more on this particular ailment."

Bob February 7, 2014 at 10:35 pm

Disclaimer: I'm another Bob, not Bob Miller.

JohnBit

So this then is the president's promise to elevate the priority of Chronic Fatigue Syndrome.

"I will have the National Institute of Health explain to me what they're currently doing and start seeing if they can do more on this particular ailment."

What is said in public is not necessarily what goes on behind the scenes. It's probably not appropriate for Obama to personally give direct instructions to the various health department organisations. But he can express an interest and ask 'if they can do more' etc. for CFS. Reading between the lines, that seems like a pretty direct intervention to me.

BTW, since Obama took an interest, the activity/interest in relation to CFS by the various HHS organisations (e.g. FDA, CDC, NIH) has sky-rocketed exponentially. (Whether they carry out actions that actually help us in the long-term is another matter.)

Personally, I think that Courtney Miller's question to Obama, as recorded in the video, was possibly the most effective piece of advocacy ever, in relation to the US government's efforts towards CFS. It was transformational. (That's not to belittle the enormous and vital efforts made by very many advocates over many years, but the question to Obama had far-reaching consequences.)

Wally February 7, 2014 at 10:53 pm


JohnBit

So this then is the president's promise to elevate the priority of Chronic Fatigue Syndrome.

"I will have the National Institute of Health explain to me what they're currently doing and start seeing if they can do more on this particular ailment."

That is all that I have seen that he committed to, but perhaps someone else may know more. When communicating with the White House, I would ask if they are not currently monitoring what the HHS is doing with the ME/CFS if they could "elevate the priority" of this illness once again and ask for a few more specific items that they look into and "monitor". :bang-head: By the way, I made a similar request to the White House back in December, so far no response. The request was sent in the first week of December. Not sure how long it usually takes to get a response, but Wally will continue to follow up. :whistle:

I actually stopped by the White House for a little visit/tour last Friday morning. Bo and Sunny were there to say hello, but unfortunately the President did not bound down the stairs after them to say hello.

I know that he was home because my tour time was moved up by two hours to accommodate another meeting that he was having at the White House later that day. I was just a bit grumpy :grumpy: that at the last minute I had to get up extra early to queue up in the freezing cold to pass through the security checkpoints.

Perhaps if I can plan a follow up visit to the White House in the near future, I can get the family's dogs to deliver my message directly to the President. I wonder how many bones it will take to get those pups to raise their voices in support of ME/CFS patients. :rolleyes:

Firestormm February 7, 2014 at 10:53 pm

@Bob Hard to believe that Courtney asked that question in 2011. I didn't realise it was so long ago. When did the CDC gain the funding for the Multi-site – do you know?

Bob February 7, 2014 at 10:57 pm


Firestormm

@Bob Hard to believe that Courtney asked that question in 2011. I didn't realise it was so long ago. When did the CDC gain the funding for the Multi-site – do you know?

It doesn't seem that long ago to me either.
Beth Unger says the CDC study started in 2012. But I don't know any more details re timing or funding.

Wally February 7, 2014 at 11:52 pm

@Bob – The President actually has quite a lot of power to direct any of the agencies and/or staff under his control. The HHS reports directly to the President as set forth in the hierarcy of the executive branch of government. But, yes you are correct that the details of those directions from the President to staff below him may not always be revealed to the public at large.

It is also the case in government that the "Chief Honcho" moves quite quickly on to other priorities unless someone keeps knocking at the door keeping the noise targeted to a specific issue, so that he and/or his staff do not loose sight of it.

In Washington it is dangerous to make too many assumptions. It is best if one gets promises in writing or even better yet on tape :wide-eyed: and then keep circling the wagons to keep the attention where it is needed.

Courtney Miller did accomplish a great coup, by getting the President on tape addressing how little he knows about the illness, but also that he committed to do some type of follow up review. It is just hard to tell at this point in time if this contact while initially appearing to be promising may have been reinterpreted by staff below him. It is worrisome to many that the "highest priority" for ME/CFS has somehow headed the government's efforts to help this illness in a direction that appears more sideways, backwards and upside down than would logically make any sense unless the definition of the "highest level of priority" has somehow been changed.

I believe Jeannette Burmeister's latest blog entry at "Thoughts About Me" expresses the head shaking response that some people are having to the government's continued machinations in its attempts to address patients and medical experts requests for help with this illness. (See, http://thoughtsaboutme.com/2014/02/07/p2p-patients-to-purgatory-or-the-jury-model-stood-on-its-head/)

I realize that there are many who are active on this Forum who may not be as familiar with the political landscape here in the U.S., but if you want to play in Washington, you have to know how to dance with the politicians. Unfortunately for this illness, we seem to be somewhat lacking in having a cohesive dance team that understands how to master this particular dance.

It is a somewhat complicated and very time consuming process, so professional lobbyists are often what is needed in the long run to sustain a strong presence to advocate one's cause. This is not to say that a less seasoned approach cannot be effective, but you still need to understand how to dance and which partners you need to convince to dance with you.

Wally

Ember February 23, 2014 at 5:50 pm


JohnBit

"I will have the National Institute of Health explain to me what they're currently doing and start seeing if they can do more on this particular ailment." [2011]

Phoenix Rising Team

So, as Lipkin says, “we are stuck”. It’s possible that the NIH will fund this work in the future, and possible they won’t. [2014]

President Obama may be “a Christian and a person of faith,” and he may believe “that God gave us brains to figure things out–and that we've got to use science to make lives better for our families and our communities and this planet.” But after asking if the NIH "can do more on this particular ailment (sic),” his answer is: "No, we can't."

[​IMG]

The NIH does, as he says, “a huge amount of the basic medical research that ends up then creating so many of the scientific advances that are making our lives longer and making out lives better.” And no doubt, President Obama “asked Dr. Francis S. Collins, M.D., Ph.D., the Director of NIH for a status report on what NIH is doing to find a cure for CFS.” But the Obama letter to Courtney Miller was a campaign gesture that left our research funding as paltry as before.

[​IMG]
Let them eat cake.

Phoenix Rising Team

In his CDC telecast to patients last September, Lipkin explained the microbiome project was being held up by this lack of funds, and urged patients to contact their representatives in Congress.

Dr. Lipkin explained:

Our evidence suggests–based on the cytokines that I have described to you–that there is, in fact, ongoing stimulus to the immune system which results in activation and may well account for many of the symptoms associated with disease.

The challenge is that we have no resources to go after identifying what it is that is stimulating these responses. So, again, I think it is critical that you apply pressure on your congressman and your senators to generate more research funding for Chronic Fatigue Syndrome research; and if you have the means yourself to do something about this that you become invested in it: because we are partners in this thing and we cannot do this work without your support or without the resources that are required to do what is required.

Dr. Lipkin would have us believe that “Tom Frieden [CDC] is receptive to it, Antony Fauci [NIH] is receptive to it, and so forth; but their hands are tied right now with sequestration.” Sequestration didn't stop this announcement, however, on April 2, 2013:

The long-awaited U.S. announcement, unveiled Tuesday by President Barack Obama, plants seed money of $100 million (U.S.) and the potential for billions more to come in a world-leading, interdisciplinary effort to crack the code of the human mind.

The Brain Research Though (sic) Advancing Innovative Neurotechnologies (BRAIN) Initiative, Obama promised, will “lead the world into that next frontier of human understanding.”

The White House goal is to develop new technologies to help scientists get their heads around how our heads actually work. The hoped-for payoffs include the prospects of futuristic breakthroughs in the treatment of brain disorders like Alzheimer’s, Parkinson’s, autism, epilepsy, schizophrenia and traumatic brain injury….

NIH director Francis Collins acknowledged the ambitiousness — “some might even call it audacious” — of such a project.

We're tantalized by the audacity of hope but denied a way out of no way, our lives rendered wholly expendable in the government's unholy scheme of things.

taniaaust1 February 23, 2014 at 6:02 pm

If Im remembering correctly, the one that Obama put onto the CFS case.. she isnt on that case any more due to not holding the previous job anymore. So that means..is anyone looking into the ME/CFS situation now for Obama?

biophile February 23, 2014 at 8:45 pm

I didn't expected much from this. While at a press conference, Obama gets asked to look into it. Obama probably asked someone whether more could be done, and the response would have been along the lines of "No, not really, maybe a little". Obama probably responded, "OK, thanks anyway." That is it. It is not like there were thousands of angry protesters hanging outside the White House. It was one person asking about something at the bottom of the priority list.

Are there any more details on whether the CDC multi-site study and IOM contract are the fruits of this request?

Ember February 23, 2014 at 10:55 pm


biophile

Are there any more details on whether the CDC multi-site study and IOM contract are the fruits of this request?

Do we have President Obama to thank for the IOM contract? On February 9, Wildaisy posted on ME/CFS Forums a snail-mail response to her FOIA request, showing that Caira Woods wrote in her August 15 memo to the NIH:

For your information, I have attached a letter that Dr. Koh sent to Dr. Collins in July about this project. Because chronic fatigue syndrome has received attention from the White House and many other parties, Dr. Koh and Dr. Tabak have had calls to discuss HHS’ plans to address this disease, including this IOM study.

Because it is late in the fiscal year, it is my understanding that a decision needs to be made as soon as possible, so that the money can be transferred over and awarded.

Myself and my boss, Deputy Assistant Secretary Nancy Lee, are happy to answer any questions you may have and appreciate your consideration of this request.

In his July 3 letter to Dr. Collins, Dr. Koh wrote, “I am writing to seek NIH's support for the Institute of Medicine (IOM) study on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).”

Snow Leopard February 23, 2014 at 11:16 pm

I daresay we need to contact Obama again and ask why the ME/CFS proportion of the NIH budget has not been increased?

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