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

August 17, 2012

Posted by Cort Johnson

President Obama responds positively to a request for more federal assistance for chronic fatigue syndrome

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.

To:  jarrettpublic@who.eop.gov

CC: courtneymiller999@gmail.com

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


____________________________________________________________

Check out the video of Courtney speaking to the President last year

Quickly zoom the video up to 46:50….

 

159 comments

{ 159 comments… read them below or add one }

peggy-sue August 17, 2012 at 11:48 am

Wow – respect!

jeffrez August 17, 2012 at 11:53 am

I love that guy! So grateful to Millers for speaking out. They deserve our thanks and congratulations!

Sushi August 17, 2012 at 11:53 am

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

Valentijn August 17, 2012 at 12:05 pm

Amazing! I am and was a big Obama supporter, but I assumed the "I'll look into it" was the typical political brush off. I'm just speechless. And in a good way for a change!

Enid August 17, 2012 at 12:11 pm

Great news Cort. With research picking up and now for you in the US what could be better news.

CJB August 17, 2012 at 12:16 pm
Dreambirdie August 17, 2012 at 12:28 pm

Yeah, really WOW.

Sushi August 17, 2012 at 12:32 pm

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

Rrrr August 17, 2012 at 12:36 pm

thank you to the millers for all their work. please let this be a turning point in our decades of suffering.

Merry August 17, 2012 at 12:38 pm

Incredible, wonderful. Thank you, Courtney and Bob Miller. Thank you, Nancy Ann DeParle. Thank you, President Obama. (Of course I'll send an email, too.)

Oh, and thanks, Cort for the great news.

Simon August 17, 2012 at 12:38 pm

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.”

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.

Nielk August 17, 2012 at 12:49 pm

My thanks and utmost respect to the Millers!

This is advocacy in action. What an accomplishment !

Thank you.

Sasha August 17, 2012 at 12:56 pm
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

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.

I am glad I caught "17 people worldwide" rather than "17 million people worldwide" before I sent it! :whistle:

Dreambirdie August 17, 2012 at 1:09 pm

Here's the link to send a message to the White House:
http://www.whitehouse.gov/contact/submit-questions-and-comments

Wally August 17, 2012 at 1:18 pm

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!

Fatima August 17, 2012 at 2:40 pm

Wonderful news! Many thanks to Courtney and Robert and to your president for living up to his promise!

camas August 17, 2012 at 3:11 pm

Well, this is a first. Thank you e-mail sent…

SpecialK82 August 17, 2012 at 3:16 pm

Absolutely floored!! I have no words. When has a politician ever followed through……..

Tally August 17, 2012 at 3:52 pm

This brings hope in better tomorrow. I'm not an American, but this will surely affect us all

Sushi August 17, 2012 at 3:55 pm

I also sent a slightly different message to the White House at the link that DB provided–just changed a few words to make sure it got counted.

Sushi

Wally August 17, 2012 at 3:59 pm

I believe it is important for the President of the United States to hear thank you for his willingness to probe further into the issues surrounding this illness.

I also would urge people to take the time to read the letter that President Obama sent to Courtney Miller. If the President does not have a "crowd" standing up for him to hear their voices, then by default the loudest voice in the room may be coming from the NIH Director, Dr. Francis Collins. Do you want Director Collins to speak for you? Or do you want to join in a collective group of voices who support further investigation, evaluation and recommendations for effectively addressing this illness.

I am not a Facebook user, but perhaps this form of social media could also be used to put together a ground swell of support to show how the public would like to see the U.S. Government address this illness in a more constructive way than currently envisioned. Just an idea if anyone would like to brainstorm ideas. Short, sweet and to the point is often the best way to start an initial ground swell of support.

Cort August 17, 2012 at 5:04 pm

I love that this was the first time the Deputy Chief of Staff was EVER asked to followup at the DHHS on a specfic disease. It could be that Pres. Obama really has a thing with 'unfairness'; with groups of people that he feels are being treated unfairly….Hopefully this and other efforts will coalesce into something really significant happening. My hats off to Bob and Courtney for their perserverance; the right person in the right place at the right time can make a big difference. We'll see how it goes.

lnester7 August 17, 2012 at 5:25 pm

Cort can you/someone interview the Deputy Chief of Staff Spoke person to see how he plans to translate this request into practice???

K2 for Hope August 17, 2012 at 6:34 pm

I am over-whelmed that we were actually acknowledged! I cannot express enough gratitude, although we will need to continue to help those advocating for us who are unseen.

laura August 17, 2012 at 6:53 pm

So incredibly cool!! Thank you to the Millers for fighting for us, and to Cort for keeping us updated.

Thank you email sent.

ggingues August 17, 2012 at 6:55 pm

I hope this leads to something postive, probably will not be in time to save his election. Hopefully Romney will keep any good work going, and stop any crap.

GG

PS I sent the email along!

WillowJ August 17, 2012 at 6:58 pm

wow! this is really cool! great work to the Millers and all who have reminded public officials of us, and thanks to the President for listening. Not sure how much teeth a directive like that has, but assigning a specific person to follow up sounds promising! Will send an email :)

dannybex August 17, 2012 at 7:23 pm
lnester7

Cort can you/someone interview the Deputy Chief of Staff Spoke person to see how he plans to translate this request into practice???

I think that's addressed in the letter from the President, although it was kind of hard to read sideways.

Quite amazing news!

CBS August 17, 2012 at 8:01 pm
dannybex

I think that's addressed in the letter from the President, although it was kind of hard to read sideways.

You may be able to view the letter as it was written by 'right clicking' on the document and selecting 'rotate clockwise' (shift-control-plus).

And yes, the letter was very cool. Many thanks to the Millers for their ongoing efforts as well as their seizing the moment.

Ember August 17, 2012 at 8:17 pm

Many thanks to Courtney and Bob! Llewellyn King's articles, such as “Obamacare's Silent Constituency,” might also have helped. I hope that Mr. King will report on this news. Especially during “political feeding time,” we should be treating President Obama to the kind of response that Mr. King has been getting all along.

JT1024 August 17, 2012 at 8:44 pm

All I can say is I'll believe it when I see it. Of course, the election is close and whoever wins the White House will have to deal with what happens in the Congressional elections.

Words are just words IMHO. Actions speak louder. If we see true changes and action on the part of the NIH/HHS and the CDC, it will be more than mere words. If we see education of primary care physicians and a coordination of services as have been developed for those with diabetes, cardiac disease, AIDS, ESRD (End Stage Renal Disease), COPD, etc, then progress has been made. If we see changes in disability and insurance coverage, that will also mean something.

Until those changes are seen, it is merely lip service.

Lindseys2525 August 17, 2012 at 9:32 pm
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

I do agree with Sushi, let's ALL respond!!! Power in numbers. We are finally being heard. Thanks for speaking up Courtney. This is such great news!!!

Hope123 August 17, 2012 at 11:39 pm

I was and continue to be supporter of President Obama. I think his background gives him a sense of compassion and fairness beyond other politicians I am familiar with.

However, ME/CFS is a bi (or multi)-partisan issue and I believe it would not hurt to convey our concerns to the Romney campaign as well. So my suggestion is, perhaps in another thread, someone can figure out how to do this that is more familiar with Romney or Ryan. I know a bit about Romney and respect his health plan in Mass; with Ryan, I am concern about what he will do with Medicare since a fair percentage of ME/CFS people have Medicare as their primary insurance.

Also, not a bad idea to cc your local Congressperson on any notes and ask for their support as well for this initiative.
FInd you senator here: http://www.senate.gov/general/contact_information/senators_cfm.cfm
Find your rep here: http://www.house.gov/representatives/find/

Here are a list of physicians who are currently in Congress:
http://www.patientsactionnetwork.com/physicians-of-the-112th-congress/

Jim McDermott used to represent the district where I lived and spoke at my school.

urbantravels August 17, 2012 at 11:49 pm

The Deputy Chief of Staff for Policy referred to is a woman – Nancy-Ann DeParle. There may be a way to unearth an email address for her although it doesn't look like the White House is just giving it out:

http://www.whitehouse.gov/administration/staff/nancy-ann-deparle

Cort might be able to get her through the White House press office for an interview.

Valentijn August 18, 2012 at 12:04 am
Marlène August 18, 2012 at 12:56 am

The first step is made. Don't stop :)

dannybex August 18, 2012 at 1:32 am
CBS

You may be able to view the letter as it was written by 'right clicking' on the document and selecting 'rotate clockwise' (shift-control-plus).

Thanks Shane. Unfortunately with a Mac, or at least my mac, there's no right or left click. But I can probably download it and put import it into photoshop(?) and then rotate it. :)

dannybex August 18, 2012 at 1:36 am
JT1024

Words are just words IMHO. Actions speak louder. If we see true changes and action on the part of the NIH/HHS and the CDC, it will be more than mere words…

…Until those changes are seen, it is merely lip service.

While I'm sure a lot of us can relate to your skepticism, actions have already occurred. The promise, the 'words', were spoken a year ago, the action or actions have taken place during the past month or months.

It's a start, and a lot more 'action', especially at that level, than we've ever seen before.

Snow Leopard August 18, 2012 at 1:41 am
JT1024

Words are just words IMHO. Actions speak louder. If we see true changes and action on the part of the NIH/HHS and the CDC, it will be more than mere words.

Agreed, but the main point is this gives us leverage – we can say, the President said… 'And what have you done to meet that?'… To the NIH…

Firestormm August 18, 2012 at 1:58 am

I'm not an American so I don't begin to understand what it might mean to have the President's support expressed in this way. I do think however, it could have been worse. He could have ducked out of any answer, but he didn't and it does surely give you some greater recognition. A single question has raised awareness in the White House and that's got to be a good thing. I did laugh when he slipped in the political struggle over funding for research etc. but then he's a politician so I guess that was to be expected :)

HTree August 18, 2012 at 2:52 am

Well, this brought tears to my eyes. Obama has my vote for other reasons, but good for him/(the aides) for following up, even if in just this small way. Though I hope and expect more! And THANK YOU Miller family!! I hope we have more opportunities like this! Anyone like to question the Romney camp? :0)

Firestormm August 18, 2012 at 4:14 am

As a non-American I wouldn't endorse contacting Romney :p

Valentijn August 18, 2012 at 4:57 am
Firestormm

As a non-American I wouldn't endorse contacting Romney :p

Yeah. I can already imagine the visions of budget-cuts and benefit-reductions dancing in his head.

SilverbladeTE August 18, 2012 at 7:21 am

bit off topic
can't we have a nicer pic of Obama on the front page, as he's being nice to us?

[​IMG]

that pic always makes me thinks
a) He's suddenly desperate for the loo
b) he's heard some complete dumbass thing and cannot, because of decorum, do a "face palm" and call the idiot a jerkass and is biting his tongue :P

…just sayin'! ;)

Emma August 18, 2012 at 7:27 am

Important question: Does the phrase about two Program Announcements on ME/CFS mean that the NIH will finally launch new ME/CFS programs with clearly allocated funding for ME/CFS? (the thing that they DIDN'T do in connection with the Workshop)

Cort, or Bob or Courtney, could you help me out with this?

Battery Muncher August 18, 2012 at 9:04 am

This is the best piece of news I have had all month!

I hope the upcoming election will not scupper this!

Spring August 18, 2012 at 10:40 am

Wished Oprah Winfrey still had her show. With the Obama letter she might have invited Mr. And Mrs. Miller. That would have been nice…

Spring August 18, 2012 at 10:51 am

Sushi Dutch people are asked to send the email through various ways. We love to take part.

Cort August 18, 2012 at 11:34 am
fingers

GN, btw, I love (whoops, I mean best wishes) your SdB quote.

No it doesn't. ME/CFS has had program announcements – which simply list the topics the Feds are interested in – for decades.

cruzgirl August 18, 2012 at 12:05 pm

Thanks I sent a thank-you and put in a paragraph of my own words. I am from Canada and I feel it is just as important for us Canadians to thank him as we are one global community. What ever helps one will help all of us.

Thanks for starting this, and thanks to the Millers too.

Dreambirdie August 18, 2012 at 12:32 pm
SilverbladeTE

can't we have a nicer pic of Obama on the front page, as he's being nice to us?

Cort–I agree. Here's a few options to pick from:

[​IMG]

[​IMG]

[​IMG]

CJB August 18, 2012 at 12:50 pm

Is this one too much?

Dreambirdie August 18, 2012 at 12:54 pm

Ha! Yeah, superman is a bad idea. They all bit the dust in some tragic ways.

justinreilly August 18, 2012 at 1:20 pm

Great news! I'd love to see the letter where Obama indicates that he has asked that ME be raised in priority. If the Millers are reading, pls post it if you can. And thank you so very much for all this great work!!

Ember August 18, 2012 at 1:24 pm
justinreilly

I'd love to see the letter where Obama indicates that he has asked that ME be raised in priority.

Read the letter from President Obama to Courtney here.

justinreilly August 18, 2012 at 1:29 pm
Ember

Read the letter from President Obama to Courtney here.

I had read it. Don't see it in there. Cort indicated it was in another communication.

Sushi August 18, 2012 at 1:32 pm
justinreilly

I had read it. Don't see it in there. Cort indicated it was in another communication.

You have to click on "Obama letter on CFS" on that page and it comes up as a PDF–though you will have to rotate it to read it easily.

Valentijn August 18, 2012 at 1:38 pm

My own favorite presidential photo is at : http://blog.jonolan.net/wp-content/uploads/2011/09/obama_unicorn_rainbows.jpg

It's amazing how many results come up googling "obama unicorn" :-P

justinreilly August 18, 2012 at 2:13 pm
Sushi

You have to click on "Obama letter on CFS" on that page and it comes up as a PDF–though you will have to rotate it to read it easily.

I had clicked on and read that letter. Obama does not state in that letter that he has asked HHS and NIH to elevate the priority of ME. Cort stated in the article that there is another communication where he did say this. I'd like to see that letter.

Firestormm August 18, 2012 at 2:33 pm

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.

justinreilly August 18, 2012 at 3:18 pm

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!

snowathlete August 18, 2012 at 4:07 pm

Impressive, frankly.

August59 August 18, 2012 at 5:34 pm

I'm impressed that it was followed through on. I really anticipate seeing what the impact of this really does. Alot I hope!!!!!

Hope123 August 18, 2012 at 6:46 pm
Firestormm

As a non-American I wouldn't endorse contacting Romney :p

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 August 18, 2012 at 7:01 pm

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.)

Marg August 18, 2012 at 10:11 pm

I love it!

ThatBloke August 18, 2012 at 10:30 pm

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.

lancelot August 19, 2012 at 3:08 am

God Bless President Obama!

❤OBAMA❤

4 MORE YEARS!!!

:-)

MishMash August 19, 2012 at 3:28 am

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 August 19, 2012 at 3:47 am
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.

Soooo…. you're not believing el presidente's conviction then Mish? Or you think we should all smoke pot? :)

pollycbr125 August 19, 2012 at 5:32 am

am I missing something read obama me/cfs letter cannot see where he says to elevate the priority of ME. ?

Firestormm August 19, 2012 at 6:54 am

It was referred to as a separate communication Polly. See my post above #61 and Cort's opening remarks.

Dreambirdie August 19, 2012 at 2:39 pm

Here's an article by Llewellyn King (Obama Responds on Chronic Illness):
http://www.indianagazette.com/b_opinions/article_75b181eb-bd88-5fe4-bc90-f7b09f869ffd.html

Ember August 19, 2012 at 2:56 pm
Dreambirdie

Here's an article by Llewellyn King (Obama Responds on Chronic Illness):
http://www.indianagazette.com/b_opinions/article_75b181eb-bd88-5fe4-bc90-f7b09f869ffd.html

“Obama has some new friends.” And what better friend do we have than Llewellyn King?

Dreambirdie August 19, 2012 at 2:58 pm

I've started a new forum group to support the progressive causes and Obama.
here is the link:http://forums.phoenixrising.me/inde…-and-radical-independents-wme.30/group-detail

urbantravels August 19, 2012 at 3:32 pm

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.

Anne August 20, 2012 at 7:57 am

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??

CJB August 20, 2012 at 9:04 am

I think she's a Deputy CoS – I envision her as "CJ", obviously!

Eliza August 20, 2012 at 12:24 pm
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

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.

dannybex August 20, 2012 at 5:00 pm
Michelle

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.

Thanks Michelle. I don't have a Macbook, just a regular Imac, but was able to download it into Adobe Acrobat, and rotate the file. :)

LiveAgain August 20, 2012 at 5:10 pm
This is great. I think a flood of appreciative e-mails would help the president know how many of us are sick and paying attention to what the government is doing about it. So the e-mail goes to these addresses?

Marg August 20, 2012 at 5:12 pm
LiveAgain
This is great. I think a flood of appreciative e-mails would help the president know how many of us are sick and paying attention to what the government is doing about it. So the e-mail goes to these addresses?

Marg August 20, 2012 at 5:12 pm

Thanks for the addresses and I have done it. It is very exciting!

LiveAgain August 20, 2012 at 5:14 pm

Marg – I think the e-mail goes to those addresses. That's what I was asking.

Sushi August 20, 2012 at 5:36 pm
LiveAgain
This is great. I think a flood of appreciative e-mails would help the president know how many of us are sick and paying attention to what the government is doing about it. So the e-mail goes to these addresses?

You can also send a message to: http://www.whitehouse.gov/contact/submit-questions-and-comments

I did both, cause they are probably counting the numbers.

Sushi

ixchelkali August 20, 2012 at 5:47 pm
Hope123

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.

I agree that we need to treat this as a nonpartisan issue and try to inform members of both parties about this disease. Orrin Hatch (R-UT) has been an ally in the Senate and, along with (then Sen. R-PA) Rick Santorum, sent a letter to former HHS Secretary Mike Leavitt asking him to respond to the CFSAC recommendations (to no avail, alas). Even though I'm a Democrat and from a different state, I sent Sen. Hatch a letter thanking him. I do believe it to be true that under the Republican-proposed budget plan funding for NIH sponsored research would be drastically cut.

alex3619 August 21, 2012 at 4:32 am

Allyb and I have discussed the idea of sending President Obama a supporting message. Emails are great, but I wonder if a group support card or something like a petition could be good too. We did something like that about Lipkin. Similarly we should be considering asking for a comment from the Republican leadership. This is a disease costing the US and the world a lot of money, and with related diseases the costs would be very much greater – slashing research into this is the same as allowing those costs to escalate. It is very much in our interest, in the interest of the USA, and of the world, for this to be a non-partisan issue if possible.

Bye, Alex

Nielk August 21, 2012 at 6:05 am
alex3619

Allyb and I have discussed the idea of sending President Obama a supporting message. Emails are great, but I wonder if a group support card or something like a petition could be good too. We did something like that about Lipkin. Similarly we should be considering asking for a comment from the Republican leadership. This is a disease costing the US and the world a lot of money, and with related diseases the costs would be very much greater – slashing research into this is the same as allowing those costs to escalate. It is very much in our interest, in the interest of the USA, and of the world, for this to be a non-partisan issue if possible.

Bye, Alex

Hi Alex,

By group support – what do you mean? A support as far as elections goes? I don't think that that's a good idea.
I don't believe that any citizen would vote for a President on this one issue, even if one has ME/CFS.

I totally agree that this should be a non-partisan issue. We need to reach out to all the government. This disease (or any health issue) has nothing to do with who is in office. Like you stated, it is in the benefit of fiscal efficiency no matter who is in office. i am all for reaching out to the Republicans. How would we go about doing this?

alex3619 August 21, 2012 at 6:13 am

No Nielk, I mean appreciation for the acknowledgement and effort, just as in this thread but as a group effort. I am not suggesting anything that is overtly political in the sense of elections. Bye, Alex

Nielk August 21, 2012 at 6:15 am
alex3619

No Nielk, I mean appreciation for the acknowledgement and effort, just as in this thread but as a group effort. I am not suggesting anything that is overtly political in the sense of elections. Bye, Alex

I like that.:thumbsup:

Ember August 22, 2012 at 1:25 am

President Obama fulfilled promise to Reno woman for chronic fatigue research

http://www.rgj.com/article/20120821…d-promise-Reno-woman-chronic-fatigue-research
7:30 PM Aug 21, 2012
Written by Jaclyn O'Malley

Growing tired of not hearing back from Democratic President Barack Obama on his promise to her that he would investigate federal research initiatives into chronic fatigue syndrome, a Reno woman wrote to the newspaper.

Courtney Miller’s letter, published in a June edition of the Reno Gazette-Journal expressed her disappointment, following Obama’s pledge to her during a 2011 town hall meeting in Reno. She questioned his honor and said all she wanted was a letter informing her of what he learned from the National Institutes of Health.

A few weeks ago, she finally got her letter from Obama.

“It’s a really important letter,” Miller said. “It’s the best way the president could have fulfilled his promise he made to me because it will help move scientific research on this illness.

“He kept his promise, and helped the best he could. By asking the Department of Health and Human Services and National Institutes of Health to raise the priority in this illness, it’s a really, very important step for my family, and other patients.”

To thank Obama, her family attended his speech Tuesday at Truckee Meadows Community College and held up a sign.

Obama wrote in the letter dated July 26 to Miller that he asked what the NIH is doing to find a cure for chronic fatigue syndrome….

Related Links

Firestormm August 22, 2012 at 5:54 am

Also from the above: http://www.rgj.com/article/20120821…d-promise-Reno-woman-chronic-fatigue-research

Robert Miller said he feels Obama’s concern has added to public awareness of his disease and provides a sense of hope for those suffering from the illness. He said he’s aware of many people with CFS who committed suicide.

“There is momentum that the government health agencies are moving forward with the illness, of course not fast enough for those who have been ill for 10 years, 20 years and three decades, but the science is snowballing, and it’s a sign we should not give up hope,” Robert Miller said…

…“Clearly, the president has fulfilled his promise,” he said. “In my eye, I think he truly established that he is a man of character and a man of his word.”Miller added, “I truly believe when the president went back (from Reno) that within a certain amount of time he did what he said he was going to do. To hear from my wife, who made a simple request to move the science so that our sons would be able to have their dad attend baseball games, I think somebody of the intelligence level of the president picked up on her small request.”

LiveAgain August 22, 2012 at 5:29 pm

Thanks Sushi- I sent a letter directly to the white house e-mail you provided, as well.

Dreambirdie August 22, 2012 at 5:54 pm
Sushi

send a message to: http://www.whitehouse.gov/contact/submit-questions-and-comments

I did both, cause they are probably counting the numbers.

Sushi

I want to keep encouraging people to keep sending their thank you letters. They definitely count the numbers on this. AND this is the best opportunity we have had IN A LONG TIME to be heard.

Dreambirdie August 22, 2012 at 9:43 pm

btw… What happened to the photo of Obama? I liked having his photo on this thread.

Can you pick another one and post it back up?

robinsonsb August 24, 2012 at 2:24 pm

Thanks so much to the Millers and to Cort for letting us know how to express our thanks to the President. I sent the message via email and the govt. Q&A site. Many, many thanks.

Sarah

Dreambirdie August 24, 2012 at 2:45 pm

YAY! Here's the photo I really liked:

:View attachment 3719

Merry August 26, 2012 at 1:43 pm

Jennie Spotila analyzes President Obama's response to Courtney and Bob Miller at her blog Occupy CFS: http://www.occupycfs.com/2012/08/22/tale-of-two-letters/

In her concluding paragraphs she says, "It is also critical for the CFS community to recognize that if President Obama loses the election in November, we go back to square one."

Dreambirdie August 26, 2012 at 2:16 pm
Merry

Jennie Spotila analyzes President Obama's response to Courtney and Bob Miller at her blog Occupy CFS: http://www.occupycfs.com/2012/08/22/tale-of-two-letters/

In her concluding paragraphs she says, "It is also critical for the CFS community to recognize that if President Obama loses the election in November, we go back to square one."

Thanks for posting this Merry. :thumbsup:
This is why it's incorrect to think that this is a non-partisan issue because it undeniably is not!

How many other presidents have stepped up to the plate to recognize ME/CFS patients?
The answer to that question is ZERO.

Based on the Republican–Romney/Ryan plan to put "an end to BIG GOVERNMENT," where do you think that will lead?

"Reducing government deficits Mitt Romney's way would mean less money for health care for the poor and disabled and big cuts to nuts-and-bolts functions such as food inspection, border security and education.

Differences over the government's budget and spiraling deficits are among the starkest that separate Republican Romney and Democratic President Barack Obama. Obama's budget generally avoids risk, with minimal cuts to rapidly growing health care programs such as Medicare and Medicaid while socking wealthier people with tax increases. It's all part of an effort to close trillion-dollar-plus deficits." http://www.huffingtonpost.com/2012/04/23/mitt-romney-budget-promises_n_1445368.html

Dreambirdie August 26, 2012 at 2:41 pm

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. :rolleyes:

Previous post:

Next post: