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

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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

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.
 
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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 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.
 
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.
 
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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.
 
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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
 
@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.
 
@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?)
 
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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.
 
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."
 
Disclaimer: I'm another Bob, not Bob Miller.

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.)
 
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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:
 
@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 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.
 
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@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
 
"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]
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."



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.


Let them eat cake.
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.
 
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?
 
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?
 
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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).”