Chronic Fatigue Syndrome Advisory Committee Needs YOUR Help!

It'll only take a few minutes of your time, and won't cost you a thing!

Representatives Jan Schakowsky (D-IL-9) and Sue Myrick (R-NC-9) have circulated a letter to their colleagues in the U.S. House of Representatives asking them to help secure renewal of the charter for the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee (CFSAC). The CFSAC is one of very few disease-specific advisory committees that exists to make recommendations to the Secretary of Health.

ITS CHARTER IS SET TO EXPIRE ON SEPTEMBER 5th, 2008!!!

Representatives Chris Van Hollen (D-MD-8), Raul Grijalva (D-AZ-7), Ron Klein (D-FL-22), Jim Moran (D-VA-8), Ron Paul (R-TX-14) and Lee Terry (R-NE-2) have already agreed to sign.

Using the Association's form letter, please contact the member of the House of Representatives who represents you and ask him or her to sign on to this letter. There is a limited window of opportunity to add signatures -- and strength -- to this letter, so please act now! Ask him/her to sign the letter to Secretary Leavitt!

Please note that only members of Congress can authorize their signature to be added to the letter, so your effort should be directed at getting YOUR member of the House to give such authorization. For now this effort is limited to the U.S. House of Representatives; we'll keep you informed about progress toward a companion effort for the Senate.

You can learn more about the CFSAC by visiting the CFIDS Association's web site at CFSAC or the DHHS web site. You can view a copy of the draft letter to Secretary Leavitt at Renewal.pdf.

THE LINK TO WHERE YOU CAN CONTACT CONGRESS NOW IS AT: http://capwiz.com/cfids/issues/alert/?alertid=11642281&type=CO.

THANK YOU VERY MUCH FOR YOUR SUPPORT!

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Since WHEN did "Disability" become a dirty word?

Over the last 10 years, I have painfully discovered that there are NO 'breaks' in the U.S. for former professionals who were forced to leave the workforce due to the discovery and development of a disabling disease. Also, the American public just doesn't understand that being 'disabled' does NOT mean one is completely UNable to do ANYthing; the definition includes those experiencing a decrease in functioning AS COMPARED to one's past capabilities. For example, if you were able to work in a six-figure income career and now cannot even concentrate enough to flip burgers for half a day, you CAN be considered 'disabled'.

To make it worse, if you are single with little or no support system, as often 'highly-functional' people are since they were also seen as extremely self-sufficient, there is really NO supportive social services either available to, or appropriate for, you, either. In essence, you're now sick, AND ABANDONED. The American public either doesn't realize this, or doesn't WANT to accept, that this population exists.

People with Chronic Fatigue (and many other disabling conditions, for that matter) don't often 'look' sick. They are often 'bullied', or ignored, by the very people who are supposed to (or are assumed will) help them: social workers, therapists, doctors, social security employees, friends, even family. I know this because I have experienced it.

I've gotten to the point where I don't even try to get help anymore. I spend most of my days lying in bed, at home. When I DO feel well enough go out (or because I HAVE to get something done), I have lots of anxiety of being around people. Sad, but true. I find myself rushing to get home and crawling back into my 'hole'.

So, if you know of someone with Chronic Fatigue, or some other disabling condition, and they are either single and/or live alone, REACH OUT! GO KNOCK on their DOOR! Take time to stop and say 'hello'.

If you're one of those highly-functional, work-hard-play-hard people who never stops to smell the roses? I have some advice: DON'T allow yourself to get caught up in the vicious rat race of life by trying to live up to others expectations, or be accepted. Most of society lives a very unhealthy pace of life.

FOR YOU FELLOW CHRONIC FATIGUE SUFFERERS: Keep life simple; enjoy the simple things. Do what makes YOU feel good, even if you have to do it alone, and even if it's extremely difficult to kick yourself in the butt to get up and out. You feel better once you do.

Now please browse through the links below, or leave your feedback at the bottom of the page. And do whatever it takes to stay healthy! JULIE

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Chronic Fatigue Syndrome Advisory Committee Needs YOUR Help!

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Since WHEN did "Disability" become a dirty word?

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