by Karen Richards, as part of her "People Who Are Making a Difference" series*
In the summer of 1981, Rich Carson was a 23-year-old long-distance runner who had been out of college for a year. He was an ambitious, goal-oriented young man with a very successful sales career in Santa Barbara, California.
“The day that changed my life”
Then one morning in August, Carson woke up with severe flu-like symptoms. He went to a specialist who ran tests for strep throat and mononucleosis, but both came back negative. Carson continued to be extremely ill. Finally, he said, “I was blessed to meet an internist who told me that I may be suffering from either a chronic cytomegalovirus or a chronic Epstein-Barr virus.”
Once he had a name for it, Carson began calling every researcher he could find to learn more about his illness, now known as chronic fatigue syndrome.
He recalled, “I was obsessed with what was trying to destroy my life.” By 1986, Carson was spending two or three hours a day on the telephone with researchers and CFS patients.
Although Carson said, “This illness decimated my plans for a career and family,” he refused to sit back and feel sorry for himself. Instead, he avidly read every research abstract he could get his hands on. One particular abstract dealt with low natural killer cell syndrome (LNKS), which has the same symptoms as CFS. Studies in Japan reported favorable results when LNKS patients were treated with an injectable form of lentinan, an extract derived from the root-like structure of the shitake mushroom.
Not content to wait and hope this treatment would find its way to the U.S., Carson contacted the Japanese company that produced it and convinced them to donate $30,000 worth to three U.S. doctors for research. When the resulting research met with success, Carson was determined to make sure this product could be purchased in the states. Since only one company in the U.S. sold it and it was quite expensive, Carson purchased it from Japan, put his own label on it and sold it for half the price. And that was the beginning of ProHealth, Inc.
Carson didn’t take an income from ProHealth, but preferred to focus on fundraising for research. He had developed a good relationship with most of the CFS researchers and was able to fund many of them, donating almost 100 percent of ProHealth’s profits to research.
Although ProHealth is a for-profit company, it has always been run more like a nonprofit, giving away more of its profit than any other company. To date ProHealth has donated more than $2.5 million to organizations dedicated to researching and finding treatments for CFS and FM.
Dedicated to being a resource for support and education, ProHealth maintains the ImmuneSupport.com Website, which contains the largest FM & CFS treatment and research library in the world, with over 10,000 articles and abstracts. They also offer message boards, chat rooms, and two free e-newsletters (one on FM and one on CFS). Something that impresses me about the ImmuneSupport.com Website is that, although ProHealth has nutritional products to sell, they do not push their products on the reader with intrusive ads. There may be a few very subtle links to products, but the vast majority of the site is filled with helpful, easy-to-read information. They truly live up to their motto: Commerce With Compassion.
Campaign for a Fair Name
Carson has recently taken on a new cause. He has launched a campaign to change the name Chronic Fatigue Syndrome, which he feels is demeaning to patients and trivializes the seriousness of their illness. Since late July when he first mentioned his dissatisfaction with the name, he has received hundreds of letters of support. Carson said, “My favorite letter was from someone who said that calling this disease Chronic Fatigue Syndrome is like calling Parkinson's disease ‘Chronic Shakiness Syndrome’ or calling Alzheimer's disease, ‘Chronic Forgetfulness Syndrome.’”
Rich’s Wellness Plan
Today Carson is doing better than he has at any time since the onset of his illness. He attributes much of his improvement to daily juicing and nutritional supplements, including Transfer Factor, an immune stimulant.
When asked what was the best advice he could give to someone with Fibromyalgia or Chronic Fatigue Syndrome, Carson replied, “Participate in your wellness. Stay informed; keep an open mind. Never stop trying something. Never give up!” Updated: September 14, 2006
* From the Thursday, September 14, 2006 issue of Karen Richards’ About.com Fibromyalgia & Chronic Fatigue Syndrome newsletter, at http://chronicfatigue.about.com/ Copyright 2006 About, Inc. Used with permission.
Karen Richards is a co-founder with Lynne Matallana of the National Fibromyalgia Association (NFA) and was its vice-president for eight years. From 2002 through 2005 she was Executive Editor of Fibromyalgia AWARE, the first magazine devoted to Fibromyalgia and other invisible illnesses. She continues to do freelance writing for the magazine.