"It's clear that this is a complex disorder and is likely due to multiple factors," she explains. "Some common conditions may be causing the symptoms -- diabetes, thyroid conditions, autoimmune conditions. These can present with chronic ulcerative lesions, chronic itching. Those are some things we hope look for as part of our evaluation."
Kaiser Permanante was chosen for the study because of its electronic search system, Pearson says. "We can query their database for certain diagnoses and symptoms, complaints. We can try to identify people who came in with fibers, threads, and other symptoms. It's a good way to identify patients who are potentially eligible."
Case Study of Morgellons
Mary Leitao, a biologist in Pittsburgh, was spreading cream on her 2-year-old son's arm when she noticed something very unusual. "I saw this material, this fibrous material, come out of his skin. ... It was balls of fiber, like they were all bound together. When I applied the cream, they came out of his skin."
He soon began itching -- a lot -- and developed "pretty severe skin lesions," Leitao tells WebMD. "He would wake up with bloody bed sheets and was very, very uncomfortable. It was frightening."
Most frightening, and frustrating, was the dearth of information on this condition. "I'm a scientist. I did literature searches, and nothing could be found." But online she quickly met people with the same condition.
It was Leitao who called the condition "Morgellons" in 2002, naming it after a seemingly similar illness first described centuries ago. She then launched the Morgellons Research Foundation web site. It provides a registration service for people to report their symptoms.
Since 2002, up to 11,059 families have registered on her site, says Leitao. In November 2007, Leitao notified the CDC that 37% of those families had multiple family members with the symptoms.
"It's going to be a difficult investigation," says Pearson. "We're trying to figure out this unexplained condition for which we don't have a blueprint. The symptoms are complex. We'll be looking at the range of symptoms and the extent to which it overlaps with other conditions."