The Obama Promise on Chronic Fatigue Syndrome

April 23, 2011

Posted by Cort Johnson

President Obama on CFS in Reno Pres Obama Answers Question on chronic fatigue syndrome

Robert Miller has been uncanny in his ability to get near prominent public figures and push them for more support with ME/CFS. Despite having a severe case of chronic fatigue syndrome that keeps him from being able to work and participate in many activities, Bob finds a way. Bob has had personal contact with figures ranging from NIH Director Collins to Vice President Biden. This time it was his wife Courtney’s turn.

At a Reno Town Hall Meeting Courtney, asked President Obama, on camera, why the federal government is essentially ignoring her husband and a million other Americans with Chronic Fatigue Syndrome and asked for his support.

President Obama agreed to look into the situation.   Bob and his family were able to talk with Vice President Biden afterwards and the VP stated he would be on top of the NIH for CFS. He was given Bob’s contact information and some printed material. This is the first time a President or a Vice President has ever publicly mentioned or responded to a concern about CFS.

President Obama’s interaction with Courtney is available  in video and in print below. Quickly zoom the video up to 46:50 to see it

 

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Q Mr. President, my name is Courtney Miller (ph). And I want to thank you for returning science to the national priority. And I need to ask for some help for my family. My husband has chronic fatigue syndrome, which is an illness very much like multiple sclerosis. And we spend billions of dollars in this country on roughly a million patients for disability and Medicare and lost tax revenue and lost productivity, and 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 on that.

THE PRESIDENT: Well, let me, first of all, say that you are absolutely right that we’ve tried to put science back where it belongs. (Applause.) I am a Christian and a person of faith, and I believe that God gave us brains to figure things out — (applause) — and that we’ve got to use science to make life better for our families and our communities and this planet.

That’s one of the reasons why part of the Recovery Act was reinvesting in National Institute of Health — NIH — which does 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 our lives better.

Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it. But based on the story that you told me, what I promise I will do when I get back is 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. Okay? (Applause.)

You never know what is going to break it for ME/CFS. At some point someone in power is going to say that its morally wrong to ignore all these sick people. I think an agency with a 25 billion dollar budget can manage to spend more than $6,000,000 on a disease that effects 1 million people…This could be our crack in the dike…I say let’s try and blast it open.

Here’s a communication from Bob about a next step.

To All ME/CFS Patients: From Robert Miller and Family

As you know President Obama made a promise to all ME/CFS patients and their families at a Town Hall meeting in Reno last week.

He stated: “Now, I will confess to you that, although I’ve heard of chronic fatigue syndrome, I don’t have expertise in it. But based on the story that you told me, (Courtney Miller) what I promise I will do when I get back is 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. Okay? ”

So, it’s time to let President Obama know we appreciate his personal attention and promise by sending him a brief thank you for looking into our ignored illness. The more he hears from us, the more he will understand the gravity of our situation. We ask patients, their families, friends and loved ones to email President Obama at the link below.

In the Subject line: Select Health Care. Please make your letter brief and to the point. I have provided an example below along with the link:

Dear Mr. President,

I wish to thank you for your promise to Chronic Fatigue Syndrome (ME/CFS) patients at the recent Reno Town Hall Meeting, where you said that you will ask NIH to explain what the institute is doing to research our illness and encourage them to do more. I believe that scientific research can restore my life.

Sincerely,
Name: John Doe
Location: Miami, FL
Time Sick: 12 years

http://www.whitehouse.gov/contact

For me I will note that the federal government can do more than spend $3/year per person on CFS and that they can easily spend more than $6 million on a disease that their own studies show costs 20 billion a year in economic losses…

9 comments

{ 6 comments… read them below or add one }

LJS April 24, 2011 at 8:11 pm

Courtney did an excellent job of quickly summing up the most important points of CFS in the limited question time. I see it as critical to remind the president office about his promise to talk to the head of the NIH about this. He is insanely busy so unless we do not buzz in to remind the office he probably will completely forget about it.

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Cort April 24, 2011 at 9:33 pm

I agree – we need to keep his attention…write those letters! GIven that the statistics haven’t worked we need to generate political clout; its really the only way..

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Cort April 24, 2011 at 9:39 pm

This is what I wrote:

Thank you President Obama for promising to look int the NIH’s underfunding of CFS. The governments own studies indicate that chronic fatigue syndrome effects about a 1 million people and costs the American economy about 20 billion a year. Yet this disorder, which primarily strikes women, has received only 4-6 million a year from the NIH for about a decade. It doesn’t make sense economically or morally to ignore year after year a million ill and disabled Americans. Please have the NIH fund this disorder appropriately and give these people hope. Just because they have a difficult disease to understand with a terrible name does not mean they should be abandoned or ignored.

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Kathe April 26, 2011 at 3:56 am

I thought I’d give you a copy of the letter I sent to the Whitehouse.gov:

Dear Mr. President,
On a blog for Chronic Fatigue Syndrome I read that the wife of a sufferer asked if you could help and that you promised to ask NIH what was being done.
I’ve spent hours upon hours watching the weekend long conferences the team of government and civilian experts have on the NIH.gov website and it’s getting some steam and promises of improved scrutiny.
There was a recent discovery that pushed it out of the shadows when it was found to be related to a fairly new retrovirus (such as HIV) that has also been implicated in the worst cases of prostate cancer and also in leukemia.
It’s at the stage that several different groups are doing research to replicate the original study and discrepancies in the procedures has resulted in some disappointments.
To overcome that speed bump a well placed nudge from your office and badly needed funding for the labwork needed to finally crack the code on this miserable malady would be SO appreciated by SO many people who feel they’ve been treading water for many years waiting for that life preserver to pull them into a productive and energetic, pain free life. In my case I’ve been waiting for 25 long and unhappy years.
Til now, the uneducated medical community has tsk tsk’d the sufferers as psychiatric complainers so you can imagine the many souls out here who are finally daring to hope that the few medical experts, who’ve known all along that it’s of a viral or initial infectious nature, will get the means to pull together what is finally trying to coelesce.
Mr. President, we live in hopes you can deliver what has been so absent for so long.
Most sincerely,

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Eugenia April 28, 2011 at 2:09 pm

I have already recieved the White House reply to the letter I sent to the president:
April 28, 2011

Dear Friend:

Thank you for writing. I have heard from many Americans whose lives have been affected by a wide range of health conditions and diseases. Whether they are common, preventable ailments or rare, life-threatening illnesses, we must do more to find cures and improve treatments for patients.

I have always been a strong supporter of medical research that saves lives, relieves suffering, and improves the quality of life for those afflicted. Medical miracles do not happen by accident. They often result from painstaking and costly research, as well as years of trial and error. From the sequencing of the human genome to life-saving vaccines and pioneering cancer treatment, Federally-funded research has led to scientific progress and improved health care for countless Americans.

My Administration has already begun the work of advancing medical research. The American Recovery and Reinvestment Act made $8.2 billion available to the National Institutes of Health for scientific research grants. This money will help fund an array of research projects in labs and hospitals across the country. I also lifted the ban on Federal funding for embryonic stem cell research, which has the unique potential to help us better understand — and possibly cure — some of the most devastating diseases and conditions. To explore the steps my Administration is taking, please visit: http://www.nih.gov or http://www.cancer.gov.

This work is essential not only for our health and well-being, but also for the progress of all humanity. Together, we can ensure America continues to lead the world in medical research and scientific discovery. Thank you, again, for writing.

Sincerely,

Barack Obama

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Whitney Dafoe April 28, 2011 at 8:50 pm

I’ve had CFS for 3 years and I was paid staff in Obama’s campaign in 2008. I imagine I might have some leverage and am willing and eager to do anything to help. I’ll send an email, but please let me know if there’s anything else I can do or maybe we an coordinate and figure something out.

Whitney

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