I came into this world as a "Marine Brat" in Quantico Virginia. My father was finishing his last tour of duty during the "Bay of Pigs Invasion." From Quantico Virginia, we returned home to Michigan (both of my parents are Michiganders, I'm still partial to Virginia *S*. We came home to Michigan when I was about three years old.

I am an only child, only niece and an only grandchild. That would lead you to believe that I was quite spoiled, I wasn't. My parents both worked. Mom 6 days a week and she still does to this day. We lived in the country so there weren't a lot of children near and my best friend was also an only child so we spent a lot of time together. He was a dare-devil and still is to this day. He races snowmobiles professionally.

With Mom working, my grandparents (who lived next door) had a great deal to do with my up brining. They were already old people in their 40's and a lot of my time was spent with them at doctor appointments and visiting their brothers and sisters. Grandma had Parkinson's disease, diabetes, arthritis and numerous other ailments. Grandpa had arthritis, was totally deaf from the age of 5, heart problems and was totally disabled due to an automobile accident in his late twenties.

I was brought up to be the "perfect child." Never have a frown, never be in the way and take care of yourself as best you can (they call that a latch key child now.) In school I missed only two days of attendance from grades 2 through 12. I didn't care how sick I was I preferred to be at school than taken care of my grandparents. I had allergies during my younger years and then developed endometriosis as well as being diagnosed with fibrocystic disease when I was 17.

I began my working life at 17 in the accounting department. I paid my way through college and earned my accounting degree and still work for the same company. In the first 15 years of my career I seldom missed days due to illness. In the last few years I have had two laproscopics and a complete hysterectomy. I have developed a hiatus hernia with reflux, osteoarthritis, am being treated for depression (that I've had since my teen years but have only been treated the last four years for this), restless leg syndrome, migraine headaches (there isn't a day in the last 10 years that I recall not having a headache), chest pains (a heart cath ruled out any blockages, thank you God), and high blood pressure. Yes, there are other maladies. I would say that I have about 90-95 percent of the known symptoms of fibromyalgia.

How does this disease make me feel. Mad as hell. There was once a time not to long ago when I had the energy to keep up my lawn to perfection as well as my flower-beds and plants. My house was always picked up and near spotless. I cooked a complete meal every evening when I returned from work (I do love to cook). I had time to visit my friends, travel and enjoy it, and work 10-12 hours a day. That was a wonderful life.

Life now is a little different. My lawn and flower beds get attention at the last possible second, my laundry is always waiting to be folded or washed. I don't cook anymore except on a rare occasion and I am quite proud of myself when that happens. My house is a wreck, in my eyes, I just don't have the energy to vacuum or scrub floors, dust or at times put the dishes in the dish washer. If I visit friends, I pay a high price for the night out. That being, it takes a week of rest and sleep before my energy level is picked up enough to feel like I can function. I still travel. However, I'm not the lets go18 plus hours a day and see everything that is there I once was. I now take a lot of naps during the day and go to bed early. Bless my travel partner, she still goes with me and doesn't complain about me being a party pooper. She sees how much this disease has affected me and only wishes there was something she could do to get back the "old friend" with all the energy and then some to burn. I wish that person were here again too.

My work life has drastically changed too. Because of the depression and lack of energy my doctor has limited my work hours to 40 hours a week. Doesn't sound bad to you? Remember I typically put in 10-12 hours a day and was on the fast track to senior management. I have now had to take a step back and realize that I am no longer on the fast track. After my eight hour work day, now I go home and will either take a 2 hour nap or will sleep until the next day's time to get up and go to work again.. I will be happy just to be able to continue to work until age 55. I pray that my body will hold out that long. You see I am one of the more fortunate sufferers of this disease because I am still able to work. It may be due to not having a family, which would be an added burden (I don't mean that in the negative sense because I would truly have loved to have been blessed with a family, but in reality I don't see how I could work and take care of a family.)

The weekends you say, how are the weekends? Saturday is usually always a complete day of rest, my energy level usually comes around 7 p.m. and I will start on what house work I can. Sunday is very difficult for me, I was once a very active member in my church and now I typically don't wake until noon. I miss my faith family. God bless them they have stayed in touch and continue to support me with kind words and prayer

Why am I telling you my story? Because I want you to know that fibromyalgia does exist. There are many doctors and politicians out there who will deny this. There are many quacks out there that will tell you they have a cure. But the reality is, there is no cure and we as a country are doing nothing to find a cure let alone a cause. I want this story to be heard by all so they can look around them and see how wonderful life can be and see how our lives are. I would love to think that if you ever had the chance to sign a petition in our favor to do research for us that you would. God Bless you all and keep us in your prayers.

Prefer to remain anonymous

Ten years ago, I was an athlete that loved the version of "No Pain, No Gain". I thought people who had excuses for not trying to make their lives better, were lazy. Or clueless. I took pride in being strong. I didn't need diets. I stressed to my children that you didn't need to be thin to feel good about yourself. I stressed strength and equality. I was previously a U.S. rated volleyball player.

My first problems started with a herniated disk, which after 2 years of mis-diagnosis of a pulled muscle, I had a paralyzed arm, excruciating pain. Finally, a disc was removed and I moved on with life. Gave up the volleyball but continued the tennis.

A few years later, I had a horrendous flu, that put me in bed for a month, great fatigue and pain. I pursued a good doctor, and after many tests I was diagnosed with CFIDS. Again, battled back. Took supplements and willed my way back to health with exercise and strength and antibiotics. That took 6 months.

Had two melanomas removed. Large, life threatening, but I was lucky. I bounced back, playing tennis 10 days later. My doctor said that all my illnesses may be related, and I didn't listen. I did use sunscreen though after that. I didn't know anything about the immune system.

A few years later, I injured my back so badly playing tennis, I couldn't walk for months. The pain never went away. MRI show mild disc degeneration. Amazed at the pain. Could not rehab or will it away. Nursed my way through the last few years with alot of Aleve. Gave up sports. That was hard. My friends were world class senior athletes. Slowly became separated from my past life.

I am 52 years old now. I have had this last flare up for 5 months. Started with horrible sore throat, nerve pain all over the body. Muscles feeling like cement. Great fatigue, pain and neurological problems, burning feet, all previous injuries inflamed and as bad as the first time. Stomach and bladder problems. Being a serious believer in healing myself, I have read thousands of pages of research on FMS and CFIDS, and I think they are related, if not the same disease. I am now on antibiotics. I think, as some researchers do, that this whole illness is a viral illness. Or at least brought on by a viral or bacterial nature. Some being in more pain than others, depending on the progression of the disease.

This illness is not in anyone's head. The symptoms like that of MS, Lyme disease, and Lupus are similar, and not in someone's head. Studies are now being done on the similarities in these diseases and rheumatoid arthritis. We are disabled. We rarely feel healed, just as an arthritis or MS patient might state.

In Europe, they call it a form of encephalitis. More and more people get this every day. Millions in the U.S. have it. Doctors are mis-diagnosing everyday here, and labeling us a bad case of depression. The pain is unbearable, and disabling. We have lived an oppressed life that no one understands. Not only with pain, but the ignorance of the doctors, family and friends, who look at you as a nut case. Only in the U.S.

The U. S. doctors use the term FMS freely, whenever they don't want to do proper tests to diagnose. I have witnessed people who have nearly died with infections from this disease because the medical leaders do not recognize this as an epidemic causing many complicated addictions of pain medications and antidepressants, when, in fact, they have a microbial infection causing FMS symptoms.

I refuse to live that life. I will keep pressing for answers. I will not give up. We have some issues here that need to be addressed at congress and in the medical world. Of course, that will mean some medical professionals will have to admit they were wrong. Egos have alot to do with whether we will find a cure. I believe it is out there. We need to be recognized as humans who have been mis-diagnosed and the government needs to take action to fund studies about FMS, CFIDS, and including them in viral illnesses. Only then, will we get close to a cure.

EBgirl/Linda

My name is Barbara Rubin and I have been chemically injured by pesticides. Sensitized in my early adult years to chemicals, most likely from large scale residential uses of Dursban imposed upon by my landlords, I managed my life and environment to permit me to work productively through avoidance of further exposures. I have learned that I am one of fifteen percent of the population that is deficient in an enzyme, paroxonase, which is necessary to detoxify many of these chemical in the body. There is no treatment for this deficiency except for the government to recognize that the poisons registered for use in our country are harming the majority of persons coming in contact with them.

In 1999, I supervised a school for developmentally disabled children under the auspices of a large, not-for-profit agency. I had a written accommodation plan which assured me I would not be exposed to pesticides without my knowledge and that I was permitted to avoid contact with the chemicals if used in my vicinity. The company did not keep its word and I was exposed (as were all in the school) to recurrent applications of neurotoxic pyrethroid insecticides performed after school hours without my knowledge. After six months of exposure I was left brain damaged and unable to perform even routine tasks with my prior levels of skill. MRI indicated cortical atrophy while neuropsychological evaluation estimated a 24 point loss in IQ and deficits across the board in linguistic, cognitive and sensory-motor functioning. My career as a speech-language pathologist and school administrator was ended. The exposure also left me with fibromyalgia and I live with chronic pain. I am too chemically sensitive to tolerate pain medications.

A residential pesticide exposure was imposed upon me the following year by new tenants living below my second floor apartment. They chose not to abide by their agreement not to use pesticides without notifying the landlord and myself in advance. Dichlorvos fumes, entering my apartment through the floorboards, left me so ill that the majority of my days are still spent in bed, resting and maintaining strict avoidance of all contacts with toxic chemicals. All of my possessions were contaminated and had to be discarded; library, furnishings, clothing, electronics etc. The cumulative effects of all these exposures have been devastating to myself and my family.

All incidents were reported to the EPA who informed me that insofar as the chemicals used were registered, they were not interested in investigating the users of the poisons. They suggested I litigate these matters privately, given the prior agreements that such exposures would not occur. Their indifference to the fact that routine applications of chemicals approved for use by their agency can cause such horrendous health effects, is a violation of all rational thought and moral responsibility.

Formerly an extremely productive member of society, I am now supported by SSDI (under a diagnosis of brain damage) and LTD payments (on the basis of Toxic Effects of Chemicals as well as Toxic Encephalopathy). Only 45 years old, it is unlikely I will be employable in the future. During my wait for disability payments to begin, only family and friends stood between me and starvation. I was so chemically sensitive, I was unable to tolerate their homes and lived in my car for much of the year. Not a single shelter in the New York area could accommodate me as all sprayed pesticides regularly and used fragranced cleaning products. I am still in search of safe housing due to the ubiquitous use of toxic materials in nearly all rental properties - pesticides, garden chemicals, particle board leaching formaldehyde into the air, carpeting, smoke and synthetic fragrances from surrounding tenants barring me from use of my apartments etc. I have moved ten times in the past four years and will need to do so again as soon as possible.

My story is not unique, There is a substantial body of research showing that neurological damage is becoming the norm among adults due to toxicity of materials we come in contact with daily. Learning disabilities are epidemic since the exposures of children with their immature brains and underdeveloped immune systems make them particularly vulnerable. I refer my readers to Dr. Phillip Landrigan of Mt Sinai Hospital for pediatric information and Dr. Kaye Kilburn, author of volumes on neurological problems due to toxicity. Regarding chemical injury, the works of Dr. Rea and Dr. Grace Zeim are very comprehensive.

I am disabled today because of the drive for profits which pre-empts meaningful safety testing, Removal of harmful products (like Dursban) will only occur after millions are harmed and thousands are fortunate enough to find out about it and then document it. There were 17,000 letters of protest about Dursban accumulated at the EPA before cancellation was made - through the 'voluntary' withdrawal of the product by manufacturers to avoid litigation. All the while, studies performed showed over 80% of the population had Dursban in their urine.

The taxpayers now support me instead of the industry which crippled me. The social security administration says that thirty percent of the workforce will be disabled before reaching retirement age. That does not include those with chronic health problems who remain marginal members of the workforce. Please return government to the business of protecting the citizenry instead of the business of protecting business. The GNP will continue to decline as Americans sicken and die. There are non-toxic alternatives to nearly all commonly used products, most cheaper and more effective to use than the dangerous materials. Stop the needless crippling of society by requiring the responsible use of chemicals in manufacturing. Biochemistry cannot be legislated, only understood and accepted as the basis for law making.

Thank you for your attention.