Skip to navigation | Skip to content

Share your knowledge. Make a difference.

Chronic Fatigue Syndrome Advisory Committee Needs YOUR Help!

1 - I can do better 2 - Jury's out 3 - Pretty darn good 4 - Splendiferous 5 - Awesometastic (by 10 people)   Your rating: 1 - I can do better 2 - Jury's out 3 - Pretty darn good 4 - Splendiferous 5 - Awesometastic

Ranked #1910 in Health, #22086 overall

Rated G. (Control what you see)

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!

 


Chronic Fatigue Syndrome - CHANGE THE NAME (ME/CFS/CFIDS)

Runtime: 4:34
760 views
8 Comments:


M.E. / Chronic Fatigue Syndrome - Sleepydust Video

Runtime: 9:16
40908 views
10 Comments:


Pompa Health Solutions - Real Hope, Healing and Wellness

Runtime: 9:59
357 views
1 Comments:

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




End Health Discrimination

DailyStrength - Free Online Support Groups GoodSearch: You Search...We Give!


Disaboom.com Connecting the millions touched by disability

JulieC's Links 

#3

CFIDS.org

1 point

#4

Children's book by a Fibromyalgia sufferer

Take a look at this new encouraging book.1 point

#5

NEW from CANADA: Ex-pharmacist hopes supplement will help millions

Story published in the 8/31/2007 edition of The Wi more...1 point

#6

Fibromyalgia & Fatigue Centers

I've been to the center in Cleveland, OH, and thes more...1 point

#8

Co-Cure.org

Provides research and general information on ME/CF more...1 point

#10

Holtorf Medical Group, Inc - Torrance, CA

Information on effective treatment of chronic fati more...1 point

#13

CFIDSHEALTH.com - Petrovic Treatment Protocol

Based in South Africa, with worldwide contacts.1 point

#18

Take a Pledge for Better Health...The FUN Starts Here!

From Speakingofwomenshealth.com!1 point

#19

Overcoming Chronic Fatigue Syndrome (Natural Methods)

Chronic Fatigue Syndrome has flown under the radar more...1 point

#20

Subliminal Therapy - The World Leader in Hypnotic Sleep Therapy

Subliminal Therapy CDs and MP3s are a revolutionar more...1 point

#24

Dr. Ivan's Depression Central

This site is Internet's central clearinghouse for more...0 points

#25

The Sams Center

Remedial Neurofeedback. There is a fundamental dif more...0 points

#26

The Life Healing Center

Specializes in chemical dependency, obsessive comp more...0 points

#27

The Bridge Recovery Center

The Bridge Health Recovery Center is an extensive, more...0 points

#28

Rest Ministries

0 points

#29

But You Don't Look Sick?

ButYouDontLookSick.com is about living life to the more...0 points

#30

Medline Plus

0 points

#33

NICE.org (from the UK)

Interesting read about CFS on the other side of th more...0 points

#36

Slamdunks Apparel

CFS and Fibromyalgia awareness t-shirts &a more...0 points

#39

Holistic Health Solutions

Holistic health tips, techniques and self-care str more...0 points

#40

Magnetic Connections

Magnetic jewelry for pain.0 points

#41

Depression feels worse than many chronic diseases: study - Yahoo! News

The first worldwide comparison of depression with more...0 points

#42

Living With Chronic Fatigue Syndrome

The young man in the videos on this site is Rutt R more...0 points

#43

New Hope Now

To find a Christian counselor in your area: call F more...0 points

#45

Finding Optimism - Promoting Health in the Face of Mental Illness

Promoting health for sufferers of mental illness. more...0 points

#46

Panic Away Official Site -Treat Panic Attacks and Anxiety

Can get FREE access if you can prove you are unemp more...0 points

#47

Therapeutic Recreation Resources

Therapeutic Recreation and recreation therapy reso more...0 points

#48

Chronic Pain Connection- Information about chronic pain conditions such as Fibromyalgia, Back Pain, and TMJ Disorder/

Learn about the symptoms, treatment, and medicatio more...0 points

#49

WHITCOMB METHOD: Home of the Fibromyalgia Relief Center

Dr. Whitcomb's method resolves most fibromyalgia s more...0 points

#53

Presidential Candidates' Health Care Plan Proposals

(Reuters) - Democratic presidential candidate Hill more...0 points

#54

Getting Social Security Disability withOUT a lawyer

It's called 'be a pain in the ass'. The journal en more...0 points

#55

Bush Admin. urges Social Security fix - Yahoo! News

The Bush administration said in a new report Monda more...0 points

#59

Article: Single with a Chronic Illness

Serves people who live with chronic illness or pai more...0 points

#63

VITAMIN D Deficiency and Fibromyalgia/CFS

A new article by the leading vitamin D researcher more...0 points

#66

Magnesium Update

0 points

#68

National Pain Care Act of 2007: What YOU Can Do

If the National Pain Care Act of 2007 is to become more...0 points

#70

Rainbow Diet Wellness Center

Rainbow Diet uses customized approach to help you more...0 points

#71

The Natural Immune System Diet, healthy foods for immune system health

Immune system, immune response, healthy foods diet more...0 points

#72

The Bright Side - Support & resources for coping with depression, grief, suicide, mental illness, and emotional crisis - Wings of Support

The Bright Side was created as a means of support more...0 points

#73

The Detoxx system: Detoxification of Biotoxins in Chronic Neurotoxic Syndromes

Chronically ill individuals suffering from neuroto more...0 points

#74

EnerHealth Botanicals

Our everyday diets have become so nutritionally de more...0 points

#75

Gulfside mental health care in crisis | news-press.com | The News-Press

A year-old mental health program is on the brink o more...0 points

Reader Feedback 

Dr_Joe

Very informative.
Great lens. Rated it 5 stars.
Feel free to visit effective weightloss.

Posted July 03, 2008

JulieC

I need to clarify something in my last comment
about the Bridge. The $16,000 for 16 days is the TOTAL price; with the insurance 'discount', it would be half-off ('only' $8,000).

I decided NOT to go last fall because even that was too much debt, I thought, for such a short-term program. If they really wanted to help people, they could accept the insurance price (meaning no extra) for at least ONE person on disability each session.

As it goes now, I can get a heck of alot of weekly IVs ($125-145 each) at the Fibro and Fatigue Centers for $8,000. And, every 5th one is FREE (plus there's an additional extra little 'bonus' which I can explain via email only if anyone is interested).

Hope that clears up things.

Posted June 05, 2008

JulieC

Response to Mizziggie:
The Bridge works great for people who can afford it. I was actually going to go last Fall, but decided not to at the last minute because even with the insurance 'discount', I would've accumulated too much debt for such a short-term program (A price of 16 days for $16,000 is a little much for some people).

I chose to return to the Fibro and Fatigue Centers instead, and am currently following a treatment protocol which I think will be long-term AND affordable for me.

Thanks for your post. I'm glad you had a positive experiece at The Bridge.

Posted May 03, 2008

 
1 of 6 pages
X
JulieC

About JulieC

http://www.myspace.com/juliec3
ohvaneone@yahoo.com

See my lenses on Whole Health
and Chronic Fatigue!

JulieC's Pages

See all of JulieC's pages