Currently, there is debate in medical and occupational health circles about whether certain illnesses -for instance, multiple chemical sensitivity (MCS), Gulf War Syndrome, and chronic fatigue syndrome (CFS)- actually exist. In all of these cases, sufferers experience a "bizarre" constellation of symptoms that don’t fit any diagnostic categories.

What they all have in common is that many of the symptoms are subjective and can’t be quantified or verified by existing tests. Nor are they explainable by our current understanding of the minutiae of human physiology, which prevents the development of objective tests to measure tiny malfunctions that can cause major disability.

There are people who fake injury and illness, but using that as an excuse to discount everyone’s illness is dangerous. The history of chronic fatigue syndrome illustrates this. There have been outbreaks of what we now call CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome) since the 1800s. Many readers will recall the Lake Tahoe "Yuppie Flu" outbreak in the early 1980s. Eventually the Centers for Disease Control established some diagnostic criteria, calling it "Chronic Fatigue Syndrome (CFS)." Pervasive fatigue, memory loss, inability to concentrate, sleep disorders, pain in joints and muscles, and immune system dysfunction are all part of this illness, which usually follows an illness such as the flu. Depression almost always accompanies CFIDS as an understandable reaction to the symptoms listed above.

While enlightened members of the medical profession were recognizing and trying to treat CFIDS, other physicians and lay people were calling it the "lazy and crazy disease." Patients’ suffering was obviously heightened by this contempt others felt for them. One young woman, Skye Dailer, was driven to suicide at age 14, after a year of illness and taunting by her schoolmates.

The debate hits home

Before taking the job, Jerry asked about biosafety cabinets, laminar flow and chemical fume hoods, and other safety equipment, and was assured that they would all be in the new facility which would open a month or two later. The new facility opened only a couple of weeks late -with nothing but a few laboratory benches. Biosafety, which is that aspect of safety devoted to protecting workers (and the general public) from bacteria, viruses, and other disease-causing microorganisms, did not exist. OSHA standards for protecting workers from bloodborne diseases were ignored.

Jerry later learned that the pig blood they were getting was never tested for infectious agents, or even parasites, one of which could have caused a miscarriage in their pregnant lab tech. The "purified human hemoglobin" turned out to be crude lysed red cells, still infectious with any viruses present in the original donor unit. And the "safety department," comprised of one person hired two months after Jerry, appeared in the blood-project facility exactly once -to listen to a biosafety seminar by one of the technicians!

We believe that Jerry developed an active Human Herpes Virus 6 infection, and CFIDS, because of his unsafe occupational blood exposure. By January, 1993, he was unable to work.

Given his medical history of excellent health until he contracted CFIDS, his physicians are convinced that occupational exposure caused his illness, but proving it to the satisfaction of workers’ compensation is another story. Since his company cooperated with getting him his long-term disability payments, we decided against fighting for workers’ compensation.

Today Jerry is still disabled. He has a handicapped parking permit, is taking thirty-odd pills, injections, and liquid supplements daily to give him enough energy to lift a whole newspaper section to read, and enough mental facility to be able to read whole articles at a time -most of the time. His I.Q. has dropped a good 30 points. Rarely is he functioning well enough to even drive local streets; if he needs to go somewhere, I take him. Fortunately, CFIDS isn’t terminal.

Unfortunately, to quote CFIDS expert Dr. Mark Loveless, "A CFIDS patient feels every day significantly as an AIDS patient feels two months before death."

Keep this in mind

Second, we can do something about unsafe conditions. I had options that I didn’t have the guts to take when I worked at a major university medical center where I was not permitted to implement a biosafety program; I subsequently contracted hepatitis B. I could have quit my job, called OSHA or their casualty insurer, or gone over my boss’ head with the safety and health problems.

Likewise, my husband should have called in OSHA or the casualty insurer or quit as soon as he realized that his employer was lying to him. Both times, we were afraid to rock the boat because we had a mortgage to pay. Obviously, a brief or even long period of unemployment would have been infinitely preferable to a lifetime of disability.

Third, buy yourself a good personal disability insurance policy large enough to replace your income. Jerry and I did get individual disability policies when we were in our 20s, with insufficient coverage. Even though Jerry’s employer provided disability coverage, that extra policy kept me from having to flip burgers to pay the bills. (It goes without saying that you have to have good medical insurance coverage.)

Finally, be charitable in how you think about and treat others, particularly ill or injured people. I can remember struggling through my own bout with hepatitis, and when Jerry is tired or forgetful, I strive to be patient. When I fail, I apologize promptly; Jerry has it tough enough without adding my anger and frustration to his load. A little compassion goes a long way to help an injured employee get back to work, or learn to live as full a life as possible with a newly-acquired permanent disability.