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
The "Obama Promise" Fulfilled: Obama Requests NIH Elevate Priority of Chronic Fatigue Syndrome
- Thread starter Phoenix Rising Team
- Start date
PS And if you want to know more about the MANY differences between Obama and Romney, take a peek at the political thread. http://forums.phoenixrising.me/index.php?threads/what-are-your-political-leanings.18947/page-23
Contrary to rumor, we really don't bite.
Contrary to rumor, we really don't bite.
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.
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.
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.
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.
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.
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
http://www.mynews4.com/news/local/s...n-Chronic-Fatigue/FGH9Q_lVT06HkM5cVaS8_A.cspx
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."
"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."
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?
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.
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.
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):
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.
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.
