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A Vision of Support

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By Michael Colin • www.ProHealth.com • April 1, 1994


There's an ancient Greek myth that tells of Sisyphus, a former king who was condemned by the Gods to roll a huge boulder up a tall mountain. He'd labor painfully to push that massive rock to the mountaintop only to have it roll back down, whereupon he'd repeat the process. Forever.

For people suffering from CFIDS, the simple act of getting out of bed can seem like a similarly endless chore, and without the real hope of a cure for this debilitating condition, many persons with CFIDS believe their future is as bleak as that of Sisyphus.

Early in 1990, a former investment broker named Rich Carson was struggling with his own CFIDS boulder. In his tenth year of illness (and despite having been totally disabled with CFlDS for three years), Rich had been active as both a research advocate and fund-raising activist for CFlDS sufferers.

While these activities--which included leading a CFIDS support group with a membership of over a hundred sufferers--gave Rich a gratifying sense of productivity in the face of his illness, he was nevertheless confronted constantly with the galling lack of treatment resources for CFIDS patients. It was this awareness that led to his forming the CFIDS Buyers Club.

Rich had been reading a scientific journal article about how Japanese doctors were using lentinan, an extract of the shiitake mushroom, to successfully treat Japanese patients with CFIDS (a condition known as "low natural killer cell syndrome" in Japan). Excited by the prospect of helping literally thousands of patients suffering from. CFlDS, Rich convinced the lentinan manufacturer to donate $30,000 worth of the substance - packaged as LEM - to Dr. Jay Goldstein, a prominent CF1DS researcher, for a patient study.

Buoyed by Dr. Goldstein's reports of "very good results" in his sample of CFIDS patients taking LEM, Rich wanted to make the supplement available to American PWCs. In 1990 he founded the CFIDS Buyers Club to make LEM available to the public, along with supplements recently discovered to ease symptoms of CFIDS--products such as coenzyme Q10, ginkgo biloba and malic acid.

In no time at all, however, Rich came to recognize that the CFIDS Buyers Club had great potential beyond making nutritional supplements available at discount prices. He saw the CFlDS Buyers Club as a "resource for the latest information on using these supplements in the treatment of CFIDS." The CFIDS Buyers Club, Rich realized," can provide an international network of additional sources of information. while using its resources to raise funds for research."

Since that time, the Club has continued to serve those three related functions: marketing supplements at near-wholesale prices to CFIDS sufferers; serving as a clearinghouse for current information concerning CFIDS and its treatment; and raising funds for research.

The CFlDS Buyers Club has grown to a current membership of over 14,000 individuals. According to Rich, "The Buyers Club concept is all about strength in numbers. The more members we have, the greater our buying power. We can buy greater quantities of supplements at lower prices and pass the savings along. As membership increases, prices decrease." And, he adds, "the more members we have, the more revenues we have to donate to research."

Sympathetic to the plight of CFlDS sufferers because of his own affliction with the disease, Rich sees the CFIDS Buyers Club not as a commercial venture, but rather as an opportunity to form an organization with human motives and altruistic ends. For that reason, the Buyers Club donates nearly all of its profits to support CFIDS research. The bulk of funds raised are channeled directly to research programs through the CFlDS Association of America, whose steering committee includes some of the nation's leading virologists and immunologists, including Drs. Paul Cheney, David Bell, Elaine DeFrietas and Nancy Klimas. "I have absolute confidence in the committee's research grant review process and ongoing system of monitoring the researchers' progress," says Rich.

The affiliation between Rich Carson and the CFIDS Association of America transcends the business of raising funds. There exists within that affiliation a common sense of selfless purpose, a connection more personal than professional. Recently, for example, a joint fund-raiser spearheaded by CFIDS Association of America President Marc Iverson (another dedicated, self-sacrificing CFIDS activist) and Rich Carson and the Buyers Club raised $250,000 for research. "I can't tell you how good it feels," says Rich, "to know that our efforts are making a difference. And I can't think of a better group to work with than the CFIDS Association of America."

To date, Rich and the CFIDS Buyers Club have made or facilitated contributions of almost $700,000 to the CFIDS Association... almost all of that money going directly to researching causes and treatments for Chronic Fatigue Immune Dysfunction Syndrome.

Rich Carson is certain that this year will be the most successful ever for raising money to research the cause and cure of CFIDS. According to Rich, the Club will take part in three major fund-raisers in 1994, the most exciting of which may be a benefit concert by one of the biggest names in rock music.

"We're in negotiations right now," says Rich. And when Rich Carson talks about negotiating with big names in the music business, he's not just waxing grandiose; most of the $1,200,000 in total contributions raised by Rich has come from, prominent members of the entertainment industry. Other fund-raising events planned for 1994 include the sale of a calendar written and illustrated by CFIDS patients and another important joint fund-raiser with the CFIDS Association of America.

Unlike the mythical Sisyphus, who never managed to escape his punishment at the hands of the gods, Rich Carson and the CFIDS Buyers Club have overcome the cruel "gods" of governmental apathy and medical skepticism: they have helped to establish the credibility of a condition once derided as the "yuppie flu" and at the same time have channeled over a million dollars toward researching and curing that condition. Through fund-raising, along with founding and administering the CFIDS Buyers Club, Rich has found a way to turn his illness into an opportunity to help others

President Marc Iverson (another dedicated, self-sacrificing CFIDS activist) and Rich Carson and the Buyers Club raised $250,000 for research. "I can't tell you how good it feels," says Rich, "to know that our efforts are making a difference. And I can't think of a better group to work with than the CFIDS Association of America."

To date, Rich and the CFIDS Buyers Club have made or facilitated contributions of almost $700,000 to the CFIDS Association... almost all of that money going directly to researching causes and treatments for Chronic Fatigue Immune Dysfunction Syndrome.

Rich Carson is certain that this year will be the most successful ever for raising money to research the cause and cure of CFIDS. Accoording to Rich, the Club will take part in three major fund-raisers in 1994, the most exciting of which may be a benefit concert by one of the biggest names in rock music. “We' re in negotiations right now," says Rich... and when Rich Carson talks about negotiating with big names in the music business, he's not just waxing grandiose; most of the $1,200,000 in total contributions raised by Rich has come from prominent members of the entertainment industry .

Other fund-raising events planned for 1994 include sale of a calendar written and illustrated by CFIDS patients (see page 9) and another important joint fund-raiser with the CFIDS Association of America.

Unlike the mythical Sisyphus, who never managed to escape his punishment at the hands of the gods, Rich Carson and the CFIDS Buyers Club have overcome the cruel "gods" of governmental apathy and medical skepticism; they have helped to establish the credibility of a condition once derided as the "yuppie flu" and at the same time have channeled over a million dollars toward researching a cure for that condition. Through fundraising, along with founding and administering the FMS Buyers Club, Rich has found a way to turn his illness into an opportunity to help others.

(This article originally appeared in HealthWatch, Spring, 1994.)



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