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, Rich 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. Rich 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, Rich 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, Rich was spending two or three hours a day on the telephone with researchers and CFS patients.
Although Rich 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., Rich 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, he 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, Rich 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.
Rich 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.
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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 $3 million to organizations dedicated to researching and finding treatments for CFS and FM.
Committed to being a resource for support and education, ProHealth maintains the ProHealth.com Website, which contains the largest FM & ME/CFS treatment and research library in the world, with over 33,000 articles and medical abstracts. They also offer message boards, chat rooms, and three free e-newsletters (FM, ME/CFS, and Wellness).
Something that impresses me about the ProHealth.com Web site is that they always put the patient first. When they ask for readers’ input, they really listen and give all suggestions serious consideration. They truly live up to their motto: Commerce With Compassion.
Fair Name Campaign
Now Rich Carson has taken on a new cause – launching the Fair Name 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 2006 when he first mentioned his dissatisfaction with the name, he has received hundreds of letters of support. Rich 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.’”
Subsequently he organized a team of eight top U.S. CFS specialists, who agreed to serve as a Name Change Advisory Board. The board proposed to the patient community that the name be changed to the acronym ME/CFS. Next, to carry the Board’s groundwork forward, Rich encouraged the formation of a voluntary Fair Name Implementation Committee, which grew to include 14 highly respected leaders in the CFS research, medical, advocacy/support, philanthropic, and patient communities. And finally, to help the patient community organize for a vote on adoption of the proposed name ME/CFS to replace ‘Chronic Fatigue Syndrome’, Rich has supported the Fair Name Implementation Committee in their work to establish a completely independent ME/CFS Fair Name Campaign Web site (http://www.afairname.org).
Rich’s Wellness Plan
Today Rich 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 ME/CFS, Rich replied, “Participate in your wellness. Stay informed; keep an open mind. Never stop trying something. Never give up!”
* ©2006 by Karen Lee Richards. Used with permission of About.com. All rights reserved. Karen Lee Richards is the Lead Expert, specializing in fibromyalgia and ME/CFS, for HealthCentral’s ChronicPainConnection (http://www.chronicpainconnection.com). Karen is co-founder of the National Fibromyalgia Association (NFA) and was Executive Editor of Fibromyalgia AWARE magazine for four years.