FM/CFS Letter to Congress

[Guest guest]

April 10, 2006

Dear Members of Congress,

My name is Dominie Soo Bush. I live in Green Cove Springs, Florida--

near ville. I am writing to call your attention to a painful

and debilitating condition called Fibromyalgia / Chronic Fatigue and

Immune Dysfunction Syndrome. FMS/CFIDS sufferers are often

misunderstood by family, friends, doctors and employers because they

don't LOOK sick, and there are presently no definitive tests for

diagnosing this illness. We are often seen as malingerers and

hypochondriacs, despite past illustrious careers and remarkable

achievements in various fields. This misunderstanding adds

tremendous emotional pain to those already dealing with a

devastating health problem. The severity is so great that some have

even sought the " help " of Dr. Kervorkian to end their suffering.

My own FMS/CFIDS condition began suddenly at the age of 30 when I

was working as a legal secretary in Gainesville, Florida in 1982.

This illness has robbed me of my ability to make a living with full-

time work and destroyed my first marriage of 18 years. My symptoms

were: severe insomnia, unrelenting fatigue, depression, inability to

concentrate, muscle stiffness and soreness, frequent viral illness

and pain throughout the body.

FMS/CFIDS is not just in the U.S. but is a worldwide epidemic. I

have had an FMS/CFIDS website at www.fms-help.com since 1996,

and I have heard from thousands of people around the world who have

identical symptoms, despite differences in lifestyle, diet, culture,

race, genetics and climate. (I myself am of Chinese-Ukrainian

descent.) Presently there is no cure for FMS/CFIDS. In fact,

researchers don't even know what causes this illness, although it

appears to be a breakdown in immune function. This illness seems

to afflict the hardest working and brightest of our population. It

knows no racial or economic boundaries, and men as well as women

develop this illness--even teenagers are being diagnosed now.

I hope you will use your influence to increase medical research

funding and create favorable health policies for people with

FMS/CFIDS. We greatly need the understanding of family, friends,

employers, doctors, lawyers, disability courts, etc. Many sufferers

are not able to get health insurance. (This is strange, since many

doctors say Fibromyalgia does not exist--except in our heads. My

husband says that if it is not a medical condition, then insurance

companies should not be able to exclude sufferers from coverage!)

Many with FMS/CFIDS have been denied Social Security disability.

Many have lost everything—the respect of family, the stability of

their marriage, their homes, careers, friends and their ability to

earn a living, PLUS the loss of their health, well-being and

enjoyment of life.

Those who mock FMS/CFIDS sufferers today may find themselves victims

tomorrow. Millions are afflicted and more are diagnosed every day!

It is truly an epidemic! We need to find out what has caused this

illness and then how to cure it!

Thank you for reading this letter and for anything you can do to

help us. May 12th is the designated International Fibromyalgia

Awareness Day each year.

Sincerely,

Dominie Soo Bush