Article: The Obama Promise on Chronic Fatigue Syndrome
- Thread starter Phoenix Rising Team
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I thought it was a wonderful moment... Courtney somehow made a personal request that was moving but not pushy... I don't know how she did it actually. It was a very sincere request and I thought Obama responded in a sincere manner.
At the very least we know the Obama White House will confer with the NIH on what they are doing for CFS. It's just so obvious even to a laymen that spending 6 million a year a disorder doesn't come anywhere near to cutting it.
If we can turn this into an issue we can go far.
At the very least we know the Obama White House will confer with the NIH on what they are doing for CFS. It's just so obvious even to a laymen that spending 6 million a year a disorder doesn't come anywhere near to cutting it.
If we can turn this into an issue we can go far.
Me too-Thank you for posting this and thank you Courtney Miller! The President needs to hear the truth, sincerely stated, about what has been happening in the hallowed halls of the NIH-or not happening there, and at the CDC, etc.
Awesome!
Lois
Awesome!
Lois
BRAVO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
That was dignified, poised, and incredibly effective.
As a part of this community I cannot applaud you enough.
You are Inspiring. GREAT JOB.
That was dignified, poised, and incredibly effective.
As a part of this community I cannot applaud you enough.
You are Inspiring. GREAT JOB.
BTW- I just fired off a White House email.
If you use the fill in please be aware that a word is missing:
"I wish to thank you for your promise to (blank) Chronic Fatigue Syndrome (ME/CFS) patients at the recent Reno Town Hall Meeting,"
I inserted the word "assist"- but just be aware so they don't get flooded with emails that don't make sense.
If you use the fill in please be aware that a word is missing:
"I wish to thank you for your promise to (blank) Chronic Fatigue Syndrome (ME/CFS) patients at the recent Reno Town Hall Meeting,"
I inserted the word "assist"- but just be aware so they don't get flooded with emails that don't make sense.
BRAVO!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
That was dignified, poised, and incredibly effective.
As a part of this community I cannot applaud you enough.
You are Inspiring. GREAT JOB.
I agree - really a great job by Courtney! We should hire her
. Just think if we could have a person in every Town Hall meeting get up and ask a question about ME/CFS..We just need more coordination...I'm am still on a high that Courtney spoke out for us! Cort, I was just thinking the same thing about getting people to other town hall meetings. I would love to donate money towards mileage/lodging. I'm sure we could raise the money here if someone can go. We could even do it for town halls for Congress reps.
Congratulations and a BIG THANK YOU! to Robert and Courtney Miller!! As Cort wrote today, Bob has had an uncanny knack for getting up close and personal with some top officials in this country. And take it from somebody who spent mucho time and effort trying to do this 2 decades ago, this would wear out several healthy people, but to accomplish this while being so darn sick, it is near miraculous! And also, for Courtney to remain calm and composed and hit the bullseye SOOO perfectly that she complimented the President on something that is VERY close to his heart as her opening comment....and that is "putting SCIENTISTS back in charge of Science"...instead of perceived religious zealots from the past 8 years in the Bush, Jr. regime, was a very smooth move.
and Then to have the accurate numbers of the pitiful funding for M.E. and CFS, while costing the U.S. economy tens of billions of dollars in losses by letting us twist in the wind was strong move number 2, and then pulling on the President's heart strings a bit saying that Robert's kids would like to be able to do something with their Da. It was like watching an accomplished matador leap up and stick his banderillas into that silver dollar sized soft spot in the back of a raging bull's tough neck! just a beautiful job. and it was picked up by several media outlets in the U.S. and abroad. So, media editors decided that this story was too good to pass up!
So, Thanks again Robert and Courtney. Now, please ask all your friends to go to our website at www.rescindinc.org and use Jerry Greyson's tips about writing to President Obama on the 19th anniversary of May 12th, just a few weeks away. Jerry has put up multiple URL's and other hints, including the fact that it should be at least partially hand written and make it PERSONAL and straight from the heart! President Obama has instructed his staff to give him at least 10 letters each night from "average americans" who do NOT have PR and Lobbying firms to bring up their cause before Congress. The White House can get up to 50,000 letters a day! So, PLEASE get out your pens and write your letters. Send One every day from Now, until May 10th or so. and Remember, the Life you save, might be your own! xo TMH http://forums.phoenixrising.me/images/smilies/newSmilies/cheshire smiley.gif
and Then to have the accurate numbers of the pitiful funding for M.E. and CFS, while costing the U.S. economy tens of billions of dollars in losses by letting us twist in the wind was strong move number 2, and then pulling on the President's heart strings a bit saying that Robert's kids would like to be able to do something with their Da. It was like watching an accomplished matador leap up and stick his banderillas into that silver dollar sized soft spot in the back of a raging bull's tough neck! just a beautiful job. and it was picked up by several media outlets in the U.S. and abroad. So, media editors decided that this story was too good to pass up!
So, Thanks again Robert and Courtney. Now, please ask all your friends to go to our website at www.rescindinc.org and use Jerry Greyson's tips about writing to President Obama on the 19th anniversary of May 12th, just a few weeks away. Jerry has put up multiple URL's and other hints, including the fact that it should be at least partially hand written and make it PERSONAL and straight from the heart! President Obama has instructed his staff to give him at least 10 letters each night from "average americans" who do NOT have PR and Lobbying firms to bring up their cause before Congress. The White House can get up to 50,000 letters a day! So, PLEASE get out your pens and write your letters. Send One every day from Now, until May 10th or so. and Remember, the Life you save, might be your own! xo TMH http://forums.phoenixrising.me/images/smilies/newSmilies/cheshire smiley.gif
I am fairly new to the ME/CFS world but Bob seems like a natural leader for our cause. He is doing amazing things, even while very sick.
I will write to President Obama and mention that I can no longer play basketball because of this illness. Maybe that will help him understand how serious it is
I will write to President Obama and mention that I can no longer play basketball because of this illness. Maybe that will help him understand how serious it is
I am so grateful to Courtney, Bob and their children for making a stand and, so eloquently, stating what is a shared (and usually private) heartbreak. A great opportunity to say it on camera to the president no less! Thank you, thank you, and thank you for posting it here as well and opening up the mailrooms in DC to our letters (that will now have context)!
I can see all the wheels turning in Tom's head......
Its a good thing to see. I love the idea of hitting the Obama White HOuse on May 12th, the day Tom picked to represent us - so many years ago....It's now tradition in CFS - what a lovely thing to have our own day....
This is what I wrote:
<textarea id="dnf_class_values_communication__content_" rows="15" cols="30" name="dnf_class_values[communication][content]">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. </textarea>
(maximum characters: 2500) <input class="input-text" value="1820" readonly="readonly" size="3" name="f_7041c5aec0d2e5c89604e797f8c6a7c8" type="text"> remaining.
<textarea id="dnf_class_values_communication__content_" rows="15" cols="30" name="dnf_class_values[communication][content]">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. </textarea>
(maximum characters: 2500) <input class="input-text" value="1820" readonly="readonly" size="3" name="f_7041c5aec0d2e5c89604e797f8c6a7c8" type="text"> remaining.