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

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.

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? ​

To: jarrettpublic@who.eop.gov​

CC: courtneymiller999@gmail.com​

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

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

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.

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?

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.

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

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

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

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.

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?

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

YAY! Here's the photo I really liked:


:

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.
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