In 1981, at the age of 23, Rich Carson was the top sales person at Cox Cable TV in Santa Barbara, CA. Then he woke up one day in August 1981 with severe flu-like symptoms. When the symptoms didn’t improve after two weeks, Carson went to an ear-nose-throat specialist, who ran tests for strep throat and mononucleosis. Both tests were negative. Carson then saw an internist who informed Carson that he may be suffering from either “a chronic Cytomegalovirus or a chronic Epstein-Barr virus infection.”
“While the doctor wasn’t sure what I had, I was incredibly lucky, as things have turned out, to get an early diagnosis,” Carson says “I didn’t have to wander from doctor to doctor, and I was never referred to a psychiatrist. The internist told me that I really was sick, and I wasn’t imagining it.”
Formerly a long-distance runner, Carson began “wasting-away.” He was forced to quit his sales job and move in with his parents. After a few months after he first became ill, he noticed he was jaundiced and the memory problems he’d had since becoming ill began to get worse. While staying with his parents, Carson treated himself by taking vitamins, getting lots of rest, exercising moderately, and avoiding alcohol. He took a job as a stockbroker, though the work became difficult as his memory continued to deteriorate.
Carson’s despair over his “mystery” illness mounted. Then, in Spring 1985, Carson’s sister sent him two articles about a newly identified illness: Chronic Epstein-Barr Virus Syndrome, or CEBV. “I read these articles and I thought, oh my God, this is the disease that’s been destroying my life for so long!” Carson recalls.
So Carson telephoned every researcher he could find who was investigating this new illness, which has since come to be known as Chronic Fatigue Syndrome(CFS). “I developed early relationships with many of the researchers who are still working on CFS,” he says. By 1986, Carson was spending two or three hours a day on the telephone with CFS patients and researchers. He also started one of the first, and the largest, CFS support groups in the country.
Unfortunately, Carson had to resign as support group leader in early 1987. “My memory kept getting worse, my mind kept deteriorating,” he says. “Sometimes after work, I would forget where my car was parked.” By July 1987, Carson’s mental capabilities had deteriorated so much that his physician sent him to a specialist to measure his level of cognitive functioning, Carson was told that he tested “borderline” on math skills.
“‘Borderline’ meant borderline retarded,” says Carson, who had always been mathematically gifted. “The doctor also documented a 30-point drop in my IQ at that time.” Carson then had an MRI brain scan performed, which showed the odd “bright spots'” or lesions, that have since been identified in other CFS patients.
“The good news was that the areas of brain dysfunction seen on MRI correlated with the dysfunction seen in the psychometric tests,” Carson comments. “That meant that there was an organic basis to my cognitive losses. The bad news was that my doctors told me I would never work again as a stockbroker until I was completely recovered from this illness.”
So in 1987, after six years of illness, Carson became totally disabled. He was ordered by his doctors not to work, and to avoid all kinds of stress. Fortunately, just a year previously, Carson began what would now become his life’s work: raising money for research on CFS. He turned what energy he had to his fundraising efforts. Since that time, he has raised approximately $400,000 for CFS research. Most of Carson’s fundraising efforts are done at his own expense: phone calls, postage, and his labor. He estimates that he has devoted over 4,000 hours to CFS fundraising since 1986.
“I have been able to reach a number of wealthy people who have CFS, or who are concerned about the illness,” says Carson. “I’ve earned a reputation for having accurate knowledge to give them, and for maintaining their confidentiality. I think these contributors realize that I have their best interests at heart, so they trust me.” Some of Carson’s primary contributors are prominent figures of the film and television industry.
In early 1989, Carson convinced a manufacturer and a supplier of the shiitake mushroom extract LEM (which has been shown to possess both anti-viral and immune stimulating properties) to donate $30,000 worth of the substance to Dr. Jay Goldstein, a CFS researcher in Anaheim, for a study of CFS patients. Goldstein “got very good results” in his small sample of CFS patients who took LEM, according to Carson.
These days, Carson is feeling better-except for occasional relapses, which he treats with LEM and a new drug called Kutapressin. Carson cannot explain why he has relapses. That, he says wearily, is part of the cloak mystery still surrounding CFS.
But he still continues his fundraising efforts and expresses confidence that the mystery will soon be solved. It is, in fact, the steadfast belief that keeps Carson forging ahead through the adversity of his illness. “There has been some very exciting research on two new experimental drugs,” he says, “exciting to the point of perhaps even being a cure for CFS. So now, every time I find some more money to put into research, I tell myself: this is the support that will make the difference. And I believe it will.”
Editor’s note: Since this article appeared in the New York Native, Richard Carson has continued his volunteer fundraising work on behalf of CFS patients and to date has raised over $2 million.