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Figments of the Imagination?
But look on the official American Academy of Dermatology Web site, and Morgellons isn't there. The skin afflictions starting with M jump from "Molluscum contagiosum" to "Mucocutaneous candidiasis." Ditto on the Infectious Diseases Society of America. A search for Morgellons on the National Institutes of Health site returns "no pages found." There is only one study of Morgellons in a peer-reviewed medical journal, the holy grail for Western medicine.
Jeffrey Meffert, an associate professor of dermatology at the University of Texas in San Antonio and a member of the American Academy of Dermatology, gives presentations to the medical community debunking Morgellons. It's not that people aren't suffering; they are, he says. It's just that he thinks they have something else, such as scabies or an eczema-like skin condition called prurigo nodularis that's little understood and for which there is no good treatment. And the fibers, he says, are easy to explain.
"People with very itchy skin have scabs, which ooze and tend to pick up threads from the environment, from dogs, cats, air filters, car upholstery, carpet," he says. "Any fibers that I have ever been presented with by one of my patients have always been textile fibers."
Despite the extreme skepticism in mainstream medical circles, the federal government is now taking Morgellons seriously because of pressure from sufferers and the Morgellons Research Foundation, the nonprofit organization that Mary Leitao founded in 2002 and now runs out of her house in Pennsylvania. The group is funded through contributions -- $29,649 in 2006, according to its Web site. And it uses much of the money to promote public awareness and provide small research grants.
In recent years, self-described sufferers clicked on the foundation Web site and sent thousands of form letters to members of Congress. More than 40 members from both parties, including presidential candidates Sens. Hillary Rodham Clinton, Barack Obama and John McCain, leaned on the Centers for Disease Control and Prevention, the nation's public health watchdog, to look into the disease. Sen. Barbara Boxer wrote seven times.
As a result, the CDC has budgeted nearly $1 million in the next two years for Morgellons research and is undertaking the first major epidemiological study of what it is calling an "unexplained dermopathy." Sen. Tom Harkin inserted language in a Labor Health and Human Services bill, later vetoed by President Bush, urging the CDC to continue the Morgellons investigation and "as quickly as possible to plan and begin this important research."
The CDC has contracted with Kaiser-Permanente to begin the study early this year in California. It's hoping to send the fibers collected from patients to the Armed Forces Institute of Pathology in Washington for analysis.
"No one is denying or trying to downplay that these people have something going on. It's just what is the something?" says Mark Eberhard, division director for parasitic disease at the CDC and part of a 12-member task force investigating Morgellons. He says he began to hear of similar cases when he was in graduate school 35 years ago. "This is a topic that people in the medical community have not wanted to engage on because it's very complex," he says. "There's not a clear direction forward . . . This is why we need to be very open. I'm a parasitologist, but maybe there's a virus or bacteria. We need to start with a very broad approach."
The task force will include psychiatrists. "Some of this may even be a mental condition," Eberhard says. "That's why we've been suggesting that there has to be not only a physical but mental evaluation as well as part of any study."
Sue had been going to see Praveen Gupta , a family practice physician in Rockville, for regular physicals for 14 years. He would get after her for drinking too much coffee, sometimes as many as 30 cups a day, he noted in his records. (Sue says she has never had more than five cups a day.) And he tried to get her to cut back on her three-pack-a-day smoking habit. He knew her husband and four children and thought they were all rather nice. And he knew she'd had her share of tragedies, including a son who'd been diagnosed with a malignant brain tumor. But nothing prepared him for her call in late November 2004.
He jotted notes in her medical chart: "She says she's coughing up bugs and worms." She complained of lesions all over her neck, chest, arms and legs that wouldn't heal and itching that would not end and worsened at night. She couldn't sleep. She couldn't think straight. And she said she saw fibers -- strange red, blue and black fibers -- coming out of her skin. Alarmed, he made an appointment for her to come see him that December. But when Sue came in, Gupta says, he found nothing.
"Just a generalized rash, which she could have scratched herself. Nothing out of the ordinary," Gupta says. "It was very bizarre. She brought a sample in. It didn't look like worms, that's for sure. It didn't look like any parasites, that's for sure. It looked like it could have been from the carpet. It could have been dog or cat hair, for all I know."