CFIDS & FM Health Resource’s Rich Carson: Planning and Perseverance

Planning and perseverance have always been Rich Carson’s strengths. A former stockbroker and investment specialist, he is also a person with CFIDS and a dedicated crusader for finding a cure. Carson has raised more than $2.2 million so far on behalf of fellow patients.

When he first fell ill in 1981, Carson found his life unraveling. His memory began to deteriorate, forcing him to quit his job and move in with his parents. Instead of becoming discouraged, Carson became determined. He began a mission to find the root cause of his illness. Turning what energy he had to playing detective, he poured over published studies and began calling prominent researchers and fellow patients in search of answers.

Raising money to explore new research avenues became another major objective. Carson established connections with the entertainment industry to get results. He was responsible for organizing the first major celebrity fundraiser for CFIDS, which attracted many well-known names in Hollywood, research and government, and brought in more than $250,000.

Along the way, Carson realized that research alone is not enough. Individuals with CFIDS need more immediate help, including treatment resources and options. To address these needs, he began one of the first CFIDS support groups in the country.

In 1989 he founded the CFIDS and Fibromyalgia Health Resource as a way to offer nutritional supplements to the CFIDS community. The Health Resource, which has grown to more than 25,000 members, also serves as an information clearinghouse. A free newsletter, Healthwatch, is distributed to members, along with a

bi-weekly email news bulletin. More information about Health Resource is available on their website,

“This is not a commercial venture that will contribute to personal wealth, but a way to support those who have this terrible illness,” says Carson. “It exists for the benefit of patients, with more than half of our profits dedicated to research and advocacy, a track record I believe is unsurpassed in private industry.”

On the research front, Carson has become particularly interested in human herpesvirus 6 (HHV6), which can infect the central nervous system. Recent studies have found the virus in an active, replicating form in CFIDS and multiple sclerosis patients. Most people with a normal immune system are not affected by the virus, but it can be very serious in individuals whose immune systems are suppressed, such as chemotherapy or transplant patients. The Health resource has persuaded several top researchers to explore the possible role HHV6 may play in CFIDS, and is currently funding a pilot research program.

The Health Resource also has made very generous donations to The CFIDS Association and numerous researchers and support groups. In keeping with that tradition, Carson has pledged 100% of the profits from purchases made by Association members in response to a special offer advertised in [the September/October 1999] issue of the Chronicle.

Carson encourages fellow sufferers to make a personal investment in their own health. Even if it isn’t monetary, he feels everyone needs to make the commitment to taking charge of their future.

“The happiest day of my life will be when my company goes out of business because a cure has been found,” he says. “That is the goal that I am working toward, the goal that everyone with this disease should be working toward.”

Rich Carson has been a determined, dedicated and successful fundraiser for CFIDS. And if everything goes according to plan, he will find a way to beat it.

(Originally published in The CFIDS Chronicle, Sept/Oct Vol. 12, No. 5.)

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