Bringing the Heat: An ME/CFS (Chronic Fatigue Syndrome) Blog from Phoenix Rising

April 25, 2011

Bringing the Heat: An ME/CFS (Chronic Fatigue Syndrome) Blog From Phoenix Rising

The Obama Promise on Chronic Fatigue Syndrome

Posted: 23 Apr 2011 10:57 PM PDT

PResident Obama on CFS in Reno has been uncanny in his ability to get near prominent figures. It's probably more accurate to say that even though he's very ill, Bob is relentless and he's fearless and he basically just makes it happen. This time Bob and got into the Reno Town Hall meeting and there his wife, , asked President Obama, on camera, what's up with the federal goverment ignoring her husband and a million other Americans with Chronic Fatigue syndrome.

This is the first public expression by a President of the United States on chronic fatigue syndrome and and it came with a promise to look into the situation. Bob and his family were able to talk with Pres. Obama afterwards and the President stated he would be on top of the NIH for CFS. He was given Bob's contact information and some printed material. This is definitely a first for CFS.

Here it is in print and in video below. Just zoom the video up to 46:50 and there will be.__________________________________________________It's a young lady's turn. Right here, in the red. Right in front. You got a microphone coming.

Q Mr. President, my name is (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. Could this moment if we use it right – be the pebble that starts the rockslide that turns into the avalanche that turns things for ME/CFS? Could this be the political moment – if we really push it – that makes the difference? At some point someone in power is going to say…..Its fundamentally immoral to ignore all these sick people…the buck stops here!

THE QUESTION! Click on the link below to go to the YouTube Video of THE QUESTION!

Obama Gets THE QUESTION from

Remember the Obama promise:

I promise…. 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.

DO YOU THINK THEY CAN DO MORE THAN SPEND SIX MILLION DOLLARS ON ME/CFS NEXT YEAR? I DO!

I think an agency with a 25 billion 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 the next thing to do..

To All ME/CFS Patients: From 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, ( ) 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.

It is a Fill In Page which makes it easy. 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: DoeLocation: Miami, FLTime Sick: 12 years

http://www.whitehouse.gov/contact

For me I would be very explicit that the federal government can do more than spend $3/year per person on CFS….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…

Share/Bookmark

Sign In

Bringing the Heat: An ME/CFS (Chronic Fatigue Syndrome) Blog from Phoenix Rising

Recommended Posts

Guest guest

Link to comment

Share on other sites

Join the conversation

Activity