• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

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.
​
​
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​


Click to expand...
View the Post on the Blog
 
Click to expand...
Sushi
Great! Sending the email.

Thanks Courtney for having the courage to initiate and follow up on this, and to Cort for making it easy for us to send this email.

Note: You might want to remove the italics and highlighting when you paste this into your email.

Sushi
 
Sushi
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
 
Simon
Awesome! That's great news, and Obama sounds like he means it.
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.”
Click to expand...
You can imagine that focusing minds at the NIH, though I guess it very much depends on the election result. Would be great if someone could get Mitt Romney to make the same pledge to ensure the heat stays on regardless.
 
S
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
Click to expand...

I agree - I've amended the text as follows, please feel free to copy (putting your own nationality in instead where I say "British citizen"):

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 your 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 17 million people worldwide.


Although I am a British citizen, heightened US research efforts are bound to lead other nations to step up their own research programmes and we can all help each other.

I am deeply grateful for your efforts.
Click to expand...

I am glad I caught "17 people worldwide" rather than "17 million people worldwide" before I sent it! :whistle:
 
W
Thank you for sharing this information with the MECFS Community and many thanks to Courtney and Robert Miller.

The drum beat seems to be getting louder and louder from many different fronts. The door is cracked open for voices to be heard from all over the globe. Let's keep the beat going and let them see the sheer volume of people throughout the world who have been effected by this illness. Patients, family, friends and the medical/research community - it will take only a couple of minutes of your time to let your presence be known. The wave has been started, but it needs the crowd to show up for the greatest impact to be felt!
 
You must log in or register to reply here.