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.
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Subject: Thank you for elevating Chronic Fatigue Syndrome​
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Mr. President,​
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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.​
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Sincerely,​
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Name​
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State​
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Years ill​


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Firestormm
He did. And so would I :)

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.
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justinreilly
It did make me happy to see the term "ME/CFS" above the President's signature. WE PATIENTS are changing not only the political climate (hopefully) around ME but also the nomenclature of the disease. Please, everyone keep using ME not "CFS" and eventually we will see the disease being referred to by its proper name by everyone, including CDC, at some point. Every time you say "ME" brings that day closer!
 
Hope123
Firestormm said:
As a non-American I wouldn't endorse contacting Romney :p
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Well, as an American, I think our greatest hope of getting funding/ recognition for this illness is to make it a nonpartisan issue; whoever the President turns out to be, he will still need the support of Congress and, less likely for us, the Supreme Court to get his agenda heard and passed. After all, ME/CFS doesn't check to see if you are Democratic, Republican, Independent, Socialist, Libertarian, Freedom and Justice, or part of the Green (or any other) party before it decides to take over your life. If we don't even try to inform other parties of this illness and the impact on our lives, we have less recourse when they try to cut funding for programs that are important to us.

I happen to live in a solidly Democratic state and my Congressional reps have mostly voted the way I would want them to vote in regards to health issues (I have also written and spoken to my local legislative office about ME/CFS) but if people happen to live in an area were their Congressperson is not supporting the issues they want to see supported, they should contact their Congressperson.

And this presidential election looks like a close one for both Republicans and Democrats.
 
Michelle
Have to agree with JT1024 on this one. All I could think of as I read the letter was SHOW ME THE MONEY! While it's a bit impressive that he really did follow up on Courtney's question (albeit a year later when the election campaign was in full gear -- is he so desperate he's got to reach out for the ME/CFS vote? Ah to be the courted swing vote in this election!), I saw nothing in the letter that suggests a change from the status quo. Indeed I saw no appreciation for or reference to how little NIH spends on ME/CFS vis a vis other illnesses, or even compared to the cost to the national economy per Courtney's original question to him.

That said, thousands of patients flooding the White House inbox to underscore the funding discrepancy and our desperation couldn't hurt. Who knows? Maybe we could get Obama and Romney falling over themselves to get our vote. ;-) (One can dream...)

dannybex: You can "right-click" on a MacBook by tapping two fingers on the trackpad. I'm not sure how you do it with a mouse but would think that if you go to System Preferences and click on "mouse", it might have something about "secondary tap" as "right-clicking" is referred to on my MacBook's trackpad tutorial.

(Ugh. I can't believe it's taken me an hour to type this.)
 
T
This is wonderful news! Can't get much higher recognition than from the President of the USA.
The benefit will not only be in the increased funding for research etc, but the increased recognition of MECFS.

A quick scan of the net reveals that the mainstream media such as newspapers and TV have not yet reported this story.

Now is the time for all MECFS organizations and individuals to be pumping out press releases and emails to point this story out to the media so the word gets out. Once the story is more than a few days old, they will not be interested in it.

Even local newspapers etc will be interested in this story if they can have contact with a local MECFS sufferer to "hang the story on", so get in touch with your local paper or TV station now to let them know how much this means.

The more this promise is out there in wider public view, the more pressure there is on the President, NIH and CDC to follow through on it.
 
MishMash
The last time I smoked marijuana was about 30 years ago in college. I tried it about ten times total. I mostly felt paranoia, and didn't get any of the supposed euphoria or sleepiness other folks talked about.

But from what I've read, they have developed strains of cannabis that can treat all kinds of symptoms. Some of them work very well for insomnia and pain. At this point I would definitely be interested, if it were legal.

But of course, our President, the ex-pot smoker extraordinaire, feels it in his authority to throw those in jail who did exactly as he did when he was young. If President Obama would fulfill has campaign promise of butting out of our lives, and stop being nanny in chief, I would feel like my vote wasn't being wasted.
 
Firestormm
MishMash said:
The last time I smoked marijuana was about 30 years ago in college. I tried it about ten times total. I mostly felt paranoia, and didn't get any of the supposed euphoria or sleepiness other folks talked about.

But from what I've read, they have developed strains of cannabis that can treat all kinds of symptoms. Some of them work very well for insomnia and pain. At this point I would definitely be interested, if it were legal.

But of course, our President, the ex-pot smoker extraordinaire, feels it in his authority to throw those in jail who did exactly as he did when he was young. If President Obama would fulfill has campaign promise of butting out of our lives, and stop being nanny in chief, I would feel like my vote wasn't being wasted.
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Soooo.... you're not believing el presidente's conviction then Mish? Or you think we should all smoke pot? :)
 
urbantravels
Further notes: if you've downloaded the pdf and can't read it because it's sideways, go to View--->Rotate View--->Clockwise in Adobe Reader.

Is there a reason why this letter, dated back in July, is being made public at this particular time? A Friday afternoon news release is notoriously the time when a story is least likely to get covered. I thought that this was a deliberate Friday news dump until I realized it wasn't an official news release from the WH, just the Millers' letter being made public.
 
A
I have this West Wing image in my head of the President's staff walking along corridors talking really fast - about ME/CFS...! :)

So who would White House Chief of Staff, Nancy-Ann DeParle, be? Josh??
 
Eliza
Sushi said:
To members not in the US: I think it might be great if you also wanted to send this email, amending it to fit your situation, indicating something like that the world notes what is happening in the US--even if it doesn't directly affect you.

Sushi
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Sent an email a few minutes ago (I'm from Belgium).
If I were a US citizen, I would have voted for him from the beginning and would have kept voting for him. He's genuin. And he proves it by keeping his promiss to Mrs Miller. And I assume he has to make promisses every day to many many people ...
So whatever this might change or might not change regarding NIH policy and funding for CFS research, he gave us a little ray of hope again ... and that deserves a bit of gratitude.
Now keeping our fingers crossed that NIH, CDC etc. got a wake-up call ... finally ...
This is not only important for US patients but for patients all over the world.
 
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