Among the many heroes in the CFIDS movement, Rich Carson, founder of The CFIDS Buyers Club, stands out as the most successful individual CFIDS fundraiser in the world. Despite 13 years of battling the disease, he refuses to give up his quest to solve its mysteries by raising money to fund promising medical research.
During this long journey, he has subscribed to the belief that “destiny is not so much a matter of chance, but a matter of choice.” This conviction has helped him overcome the discouragement that so many CFIDS patients face. He says, “people with CFIDS have got to wrestle with this disease, do whatever they possibly can. But the worst thing is to sit back passively and wait for medical science to come up with a cure. You absolutely have to participate in your wellness.”
In 1981, 24-year-old Rich Carson came down with what he assumed was an acute case of the flu or strep throat. As a young, ambitious cable television salesman, he immediately went to an ear, nose and throat (ENT) doctor, hoping to resolve the illness and return to work. Unable to find the cause of Rich’s ailment, the ENT recommended an internist, who discovered that Rich’s spleen and lymph nodes were enlarged and his Epstein-Barr virus (EBV) and cytomegalovirus (CMV) titers were unusually high.
“He did something that I consider to be almost a miracle in my life, especially considering that it was 1981,” said. Rich. “He scratched his head and said ‘I don’t know what is wrong with you. You’re definitely sick. Even though I’ve never heard of such a disease, I think you have something I would call chronic Epstein-Barr virus or chronic CMV. If you take very, very good care of yourself and avoid alcohol and stress, you’ll probably be well within a year.”‘
The internist’s diagnosis was especially incredible, since the term chronic EBV, the precursor to what is now known as chronic fatigue syndrome (CFS) or chronic fatigue and immune dysfunction syndrome (CFIDS), was not even officially used in this disease until 1983.
Because Rich was so ill, he was forced to leave his job, where he had achieved top sales honors, and move in with his parents. He began learning about nutritional supplements and trying to speed his recovery. His doctor’s advice to take good care of himself and his belief that “if we nourish our bodies, our bodies will take care of themselves” led him to learn as much as possible about vitamins and ways they might help him.
When his illness had not resolved after the internist’s one-year prognosis, he became distressed. “I didn’t understand why I wasn’t getting well from chronic EBV or CMV, but at least I knew there was a name and an organic basis to the disease.”
After several years of recuperation, he was able to return to work, this time as a stockbroker. He was not able to work very many hours “but I was fortunate to be a stockbroker when there was a good, strong bull market, which helped me to survive financially,” he said.
In early 1985, his sister, a nurse, sent him two articles from The Annals of Internal Medicine, one by Stephen Straus and the other by James Jones, which described a disease, called chronic EBV or persistent EBV. “I read them with my mouth open, and I thought, my God, there really is a name to this disease which has literally destroyed the quality of my life for the past four years.”
Empowered, he began telephoning all the authors and co-authors of both papers. He spent hours in his office with the door closed, talking to researchers across the country about this new disease. His networking paid off when he quickly became recognized as a lay expert in what was then called CEBV.
In one of his conversations, he was referred to a fellow patient in Los Angeles. “She was the first patient I ever talked to, and it was as if I had found my long-lost sister. It was just amazing to know that there was somebody else out there with this disease who could actually understand what I was going through.” As a result, he started a local support group and began networking with patients.
In 1986, he read an article in Newsweek about the well-known director Blake Edwards in which Edwards mentioned that he suffered from CEBV. “I was amazed -here was this famous guy and he was sick, too. So I called Blake Edwards repeatedly and he finally returned my call and quickly referred me to his physician.” After what was basically a screen call, the physician was impressed by Rich’s knowledge of the disease. Soon after, “Blake called me back and recognized me as somewhat of an authority on the disease and we established a relationship.” This link opened the door for Rich to begin the large-scale fundraising within the entertainment industry for which he as become known.
His circle of CEBV/CFIDS patients and researchers became wider and wider as others were referred to him. Marc Iverson, founder of The CFIDS Association of America, was one of these people. When Marc read Hillary Johnson’s landmark two-part article about life as a CEBV (CFIDS) patient in Rolling Stone magazine, he immediately telephoned her.
In the course of their conversations, Hillary told Marc about a Santa Barbara CFIDS patient/activist named Rich Carson who was raising money for research. “I immediately called him,” said Marc, “and we struck up a fast friendship. We were both interested in making a difference by funding research to develop a cure and encouraging publication of articles in scientific journals to increase legitimacy for CFIDS.”
In addition to expanding his network of patients and doctors, Rich was continuing his quest to identify nutritional supplements which might alleviate his symptoms. In 1991, he read an article in a medical journal about a Japanese disease called low natural killer cell syndrome (LNKS), which was virtually identical to CFIDS.
Japanese doctors were treating LNKS with an extract of the shiitake mushroom called lentinin, which seemed to possess anti-viral and immune system stimulating qualities. Encouraged, he contacted the Japanese manufacturer and the U.S. distributor of LEM, a nutritional supplement containing lentinin, and convinced them to donate $20,000 worth of the substance for a trial study under Dr. Jay Goldstein’s direction. Dr. Goldstein was pleased with the results and began recommending the product to his patients. Rich negotiated a much-reduced cost with the distributor to offer LEM to CFIDS patients for considerably less than they would pay at a health food store.
With this agreement, the idea of a buyers club was born. He was hearing about other nutritional supplements, such as CoQ10, that seemed to be effective in treating CFIDS symptoms. Some of these products were expensive or difficult to find. Rich negotiated with their manufacturers to offer them to CFIDS patients at discounted prices. As his inventory grew and sales climbed, he was able to donate Buyers Club profits to CFIDS research.
He also realized that the Buyers Club could do more than sell products to patients, it could educate them about the benefits of nutritional supplements in CFIDS treatment. Thus, the Healthwatch quarterly newsletter free to all Buyers Club members was created. Recent articles have featured information on metabolic deficiencies, the supplements CoQ10 and ginkgo biloba as well as tips for recovery.
As the CFIDS Buyers Club grows Rich constantly searches for potential new treatments. He regularly reads many of the well-recognized peer-reviewed scientific medical journals, as well as countless magazines dedicated to general health, nutritional supplements and alternative forms of medical therapies. He also listens very carefully to CFIDS patients’ reports of new, promising therapies. When asked about the products he hears about most commonly, he referenced ATP+, a combination of malic acid and magnesium; CoQ10, which seems to enhance immunity; Quercetin, an anti-allergy supplement; Evening Primrose Oil, the subject of a treatment study by Dr Peter 0. Behan in Scotland; and that old standby, vitamin C.
He also pays careful attention to mainstream medical discoveries. A long-time proponent of Kutapressin, he is very excited about the possibility of scientists genetically isolating the active ingredient in Kutapressin and creating a new drug that may be 1,000 times more potent than the present form of Kutapressin. He is also looking forward to more testing on Famvir, an antivira1 pharmaceutical drug which has recently received FDA approval. It has been seen to be effective against HHV-6, EBV, CMV and even the newly discovered HHV -7. “If those viruses are involved in this disease, as is commonly believed, Famvir provides a new therapy for some people,” he said. “Ampligen is another thing I’m excited about, especially the oral form of Ampligen that is reportedly being used by Dr. Luc Montagrer (the discoverer of HlV) at the Pasteur Institute in France for the treatment of AIDS.”
The CFIDS Association of America has been a major beneficiary of Rich’s work. In addition to approximately $525,000 he has raised privately for CFIDS research since the late 1980s, Rich has facilitated donations of over $675,000 to the Association. Marc Iverson fondly remembers having the privilege of introducing him at a 1991 fundraiser held at the home of Blake Edwards and his wife, Julie Andrews. “It’s hard to believe, but many people on the West Coast were not aware of all the work Rich had done on behalf of CFIDS patients. I was honored to be the one to present him there.”
For the second year in a row, Rich has pledged to raise $125,000 to help make the Association’s annual Matching Grant fundraiser possible. This money is donated through the generosity of CFIDS patients and advocates Rich knows, many of whom work in the entertainment industry. In addition, members of the CFIDS Buyers Club contribute additional amounts to the fundraiser every year through private donations and purchases of Buyers Club products.
Although he knows $125,000 is out of reach for most people, he encourages other CFIDS patients to follow his lead. “Do something that will help other people and help themselves get well. You can’t sit back and let this destroy and consume your life you’ve got to take a pro-active stance.”
He feels that every CFIDS patient, no matter how sick, has something to offer. “If patients have money to donate, they can do something right there. Whether it’s $5 or $5,000, every bit will help. If they have been financially devastated by CFIDS, like some patients I’ve met and talked with, they can write letters and ask their friends and relatives to write letters to members of Congress to encourage federally-funded CFIDS research, ” he says.
“This really is a big project if one person tries to do it all him/herself. But if everybody does a little something, then the goal of facilitating research becomes very easy . You’ve got to take that first step, realize that it’s part of your therapy and that will make you feel good. And that will keep you feeling optimistic in spite of CFIDS.”
(This article originally appeared in the CFIDS Chronicle, Winter 1994/1995.)