By Todd Cohen
CHARLOTTE, N.C. — Before development of magnetic resonance imaging, it was difficult to diagnose multiple sclerosis, a condition then known as “hysterical paralysis” that was believed to be rooted in an individual’s character.
“There was a lot of doubt, a lot of stigma, a lot of uncertainty about whether this was real or not,” says Kim McCleary, president and CEO of the Charlotte-based CFIDS Association of America.
Today, despite 20 years of progress in promoting research and education about “chronic fatigue and immune dysfunction syndrome,” or CFIDS, the association still faces big challenges, similar to those once faced by MS advocates, in helping to find an effective way to diagnose and treat the disease, McLeary says.
Formed in 1987 by Marc Iverson of Charlotte eight years after he had become abruptly ill with CFIDS, the association has funded $4.8 million in pilot studies, making it the second-largest funder of research on the disease after the federal government.
Now, the organization is set to expand its research effort by adding a scientific director to its staff and launching a long-term effort to raise millions of dollars from individuals.
Four times as many women as men have the disease, which affects mainly adolescents and adults and cuts across all racial and socioeconomic groups, although some studies show people of color, especially blacks and Hispanics, are at higher risk of getting the disease than are whites and Asians.
It typically comes on suddenly and feels like “the worst flu you’ve ever had,” McLeary says.
Treatment mainly focuses on managing the symptoms, which include sleep disturbance, body and joint pain, foggy-headedness, swollen lymph nodes, headache and soar throat.
The cause of the disease is not known.
Operating with an annual budget of $4.5 million, the association focuses on education, public policy and research.
Through a three-year, $6 million contract with the federal Centers for Disease Control, for example, the association in 2005 launched its first-ever public-awareness campaign.
And through a separate contract, the association is working to teach medical-school physicians, interns and residents about the disease.
The organization also works on Capitol Hill and with federal health agencies on public-policy issues.
In 1998, for example, the association was instrumental in uncovering and helping to bring to Congress’ attention the fact the Centers for Disease Control over five years had spent less on the disease than it had claimed to Congress, disclosures that led to restoration of the funded research, McLeary says.
In the quiet phase of a campaign expected to take 10 years, the association already has raised $330,000 in its effort to expand funding for research, including a lead gift of $100,000 from a donor who wants to remain anonymous.
Now, building on over 4,000 journal articles, the challenge is to find a test to help doctors diagnose the disease and develop better ways of dealing with it, McLeary says.
“We need better treatment,” she says, “drugs to treat the condition, not just the symptoms.”