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By Eileen Sheehan

From Summer 2014 Forum

May 12th was International CFIDS/ME Awareness Day! Its purpose is to call attention to Chronic Fatigue Immune Dysfunction/Myalgic-Encephalomyelitis and explain why you should be concerned.

We’ve lived in Hendersonville, North Carolina, since 1986 and I’m 80 years old. I have an illness common to untold thousands around the globe and Operation Desert Storm veterans diagnosed with Gulf War Illness (GWI)! A simple example is post-exertional malaise defined as exacerbation of symptoms following physical and/or mental effort. Exercise makes us worse and could lead to relapse. We were not believed. We were denied disability benefits. We are not depressed, it’s not all in our heads and we are angry.

I woke up October 19, 1989 and thought I was dying. It felt like an elephant was crushing my chest, my head hurt, my throat was sore and I ached all over. We planned to leave that afternoon for my husband’s high school reunion. I urged him to make the trip alone. We didn’t know it then, but I wasn’t going very far for a long time. Except to bed. Except to doctors.

Knowing the date your life changed was part of chronic fatigue syndrome (CFS) criteria. Suffering debilitating fatigue for at least six months was another. My husband literally carried me from doctor to doctor for physical and emotional support. He knew I was neither lazy nor crazy, but doctors were skeptical because countless blood test results were normal.

An Infectious Disease specialist said this was “classic CFS” and I would recover. That never happened. Eventually I refused all tests. Our health insurance paid a lot for nothing. My “Be Our Guest” column, “Chronic Fatigue Syndrome is Misunderstood” was written and published fourteen years later (Times-News, June 26, 2003). It ended, “We are excited that researchers are zeroing in on neurotoxins. It would be thrilling to learn I’ve only been poisoned.”

Then I found an all-patient organization on-line in time to participate in research with The National CFIDS Foundation, Inc. It was conducted by Dr. Yoshitsugi Hokama, and staff at John A. Burns School of Medicine Pathology Laboratory in Honolulu. He is a prominent toxicologist, professor of pathology (retired) and federal consultant. I read that Dr. Hokama, at first, thought this project was ridiculous, but he wanted the Foundation’s medical director and volunteer board to quit pestering him! After testing just one sample, he quickly asked for more.

A nurse prepared my blood to send in an unbreakable test-tube. Don bought the little pack to keep it cool, but not freeze, and got a special FedEx label to ensure the box would arrive at the lab by noon the next day. A check for $100 was enclosed for lab expenses. He handed the package to the FedEx driver that night.

The “CFS Profile Test Results” were confidential and faxed to participants’ physicians. The final report was amazing. Every sample cell was taken apart and they were identical. A neurotoxin! This was an autoimmune disease and those results are replicated.

The Department of Health and Human Services (DHHS) is a federal agency with NIH (National Institutes for Health) and CDC (Centers for Disease Control) under its auspices. In conjunction with The World Health Organization (WHO), their mission is to protect our health; however, they ignore that replicated science and use tax dollars obfuscating and denying that a serious problem with exposure to ionizing radiation exists.

That money needs to be used finding a treatment and cure. Future generations will require treatments because nuclear warfare, defective waste storage and accidental leaks in power plants occurred decades ago. Precious time was wasted while damage to human beings was not taken seriously.

Contamination might be in food, air or water. In the 1980s, AIDS was taken seriously, but CFS was not. Were government health agencies afraid where a thorough investigation might lead them? I wonder.

In 2014, knowing I’ve been poisoned is no longer thrilling. It is an outrage.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606