ATLANTA – Imagine your body pocked by erupting sores. The sensation of little bugs crawling all over you. And worst of all, mysterious red and blue fibers sprouting from your skin.
It may sound like a macabre science fiction movie, but a growing legion of Americans say they suffer from this condition. And now the U.S. Centers for Disease Control and Prevention is investigating.
Some doctors dismiss these patients as delusional. But the condition – called Morgellons – has caused a small frenzy on the Internet, with hundreds of people pleading for help.
“Sometimes the government doesn’t want to panic people until they can figure out a definitive cause,” said Pat Boddie, a 62-year-old Alabama woman who said she’s had Morgellons for 14 years.
The CDC has been receiving as many as 20 calls a day from self-diagnosed Morgellons patients. The agency has been urged to investigate by, among others, U.S. Sen. Dianne Feinstein of California.
“We’re going into this with an open mind,” said Dan Rutz, spokesman for a CDC Morgellons task force that began meeting in June.
But so far there is no evidence of an infectious agent, and health officials say there is not yet enough evidence even to call it a disease.
People claiming to have Morgellons report a wide variety of symptoms, ranging from joint pain to irregular bowel movements. But most describe crawling sensations along the skin, sores, fatigue, “brain fog” and the appearance of small or microscopic fibers on or under the skin.
Some say they’ve suffered for decades, but the syndrome did not get a name until 2002, when the name “Morgellons” (pronounced mor-GELL-uns) was chosen by Mary Leitao. The South Carolina woman, who said her son suffers from the condition, founded the Morgellons Research Foundation.
She found the name in a 1674 medical paper that described a condition called Morgellons, with symptoms somewhat like her son’s. So she began using the name. “I never expected it to stick,” she said.
Leitao’s organization has become a leading source of information and research advocacy, but it too has become controversial.
Earlier this month, at least three of the eight members of the organization resigned over disagreements with Leitao, the executive director, about how she’s been running the foundation. One member – the board’s chairman – sent a letter to the U.S. Internal Revenue Service, saying Leitao had failed to produce requested financial records and he voiced suspicions of financial impropriety.
Another board member who resigned, Dr. Greg Smith, a Gainesville, Ga., pediatrician, had recently posted a donations-soliciting letter for the foundation on an Internet site frequented by Morgellons patients. Subsequently, he posted a retraction.
“I cannot in good faith ask anyone to contribute to the foundation,” Smith wrote.
Leitao described the controversy as “a power struggle” and said she’s done nothing illegal.
Some doctors believe Morgellons is produced by the mind, not the body.
“I think of Morgellons as a piece of a larger phenomenon – delusional parasitosis,” said Dr. Annette Matthews, a psychiatrist at the Oregon Health & Science University in Portland.
Delusional parasitosis is a psychosis in which sufferers believe they are infected with parasites. Often the patients have a real-life problem with scabies, lice or some other tiny attackers, but then imagine they are continuing to plague them, Matthews said.
Asked about reports of multiple Morgellons cases within a family, Matthews said delusions are transmissible – the psychiatric term is “folie a deux,” for instances in which people come to share a delusion.
Some people will biopsy themselves, or seek large quantities of antibiotics, herbal remedies, industrial bug killers and other expensive and potentially harmful treatments, she said.
The CDC’s Rutz said there may be several subgroups among the people who identify themselves as Morgellons sufferers. One group may have delusional parasitosis, but another may have something else.
The 12-person CDC task force includes two pathologists, a toxicologist, an ethicist, a mental health expert and specialists in infectious, parasitic, environmental and chronic disease. The group is developing a case definition of Morgellons.