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Marc Iverson: CFIDS Association of America Founder

  [ 6 votes ]   [ Discuss This Article ]
By Cort Johnson* • • July 20, 2009

Marc Iverson was on the fast track to success in the 1970’s. A graduate of Colgate, Wharton and Harvard (CPA, MBA) he was, at 27, a young vice president at Barclays America Bank with a very bright future.

In the fall of 1979, however, that bright future disappeared. Out of the blue Marc’s energy levels plummeted, he began experiencing vertigo, and his once razor sharp mind lost its edge. His promising career in a shambles, Mark went on a seven-year odyssey from one doctor to another.

Finally, in 1987, he found a physician who could give him a diagnosis: "chronic Epstein-Barr virus." Getting the diagnosis spurred him into action, and within months he’d co-founded the Charlotte Chronic Epstein-Barr Virus Association (CCEBVA) in North Carolina to spur research efforts focused on the disease.

Mark’s initial diagnosis would turn out to be incorrect, but his vision of an organization that would inform, advocate and provide research funding for this disease lived on and grew.

Within months after its formation, the CCEBVA had awarded its first research grant (to Dr. Paul Cheney), organized its first scientific conference, and started its newsletter (the CFIDS Chronicle). The first paid staff member was added the next year. In 1988, the CCEBVA morphed into the Chronic Fatigue Immune Dysfunction Syndrome Association of Charlotte (CFIDSAC), and in 1993 it went national as the CFIDS Association of America (CAA).

The CFIDS Association of America would grow to be the dominant ME/CFS support group in the US, and now with a staff of 13, it is still the only ME/CFS support group with paid staff.

Mark served as Chairman of the Board of Directors of the CFIDS Association of America for 13 years. His guidance and the prominent role he played as a donor and fundraiser were critical in the Association’s development.

During Mark’s tenure, the CFIDS Association made advances that were remarkable for a small support organization advocating for a controversial and misunderstood disease. These accomplishments included the creation of an NIH CFS research program; a special review panel devoted to CFS grants; a federal advisory committee (the CFSAC, one of the few devoted to a single disease); a Social Security Ruling on CFS – rare for a single disease; and the discovery of a CFS-related accounting scandal at the CDC.

Citing his health problems, family obligations and a different vision for the CFIDS Association of America’s future, Mark Iverson resigned from the organization in 2001. Still an active philanthropist, he continues to donate to numerous ME/CFS organizations and causes, including the IACFS/ME, the CFIDS Association of America, and Dr. Cheney’s work.
* Cort Johnson, a noted research reporter, is founder of the website Phoenix Rising: A Guide to ME/CFS ( and publisher of the bi-monthly Phoenix Rising Newsletter.

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