FRANK X. MULLEN JR.
(03/02/09) For the Reno Gazette
The Centers for Disease Control and Prevention research into Morgellons disease, called the "unexplained dermopathy" investigation, is in the ninth month and results may be released by the end of the year, officials said.
The CDC Web site says: "the suffering that many people associate with this condition is best addressed by a careful, objective scientific analysis. Considering the complexity of this condition, we believe that a measured and thorough approach offers the best chance for finding useful answers."
The agency awarded a contract to Kaiser Permanente's Northern California Division of Research to assist in the investigation. The $545,000 study is being designed and led by CDC, moved to action after inquiries from the public, health care providers, public health officials, Congress, and news media, according to the agency.
Celebrities also get the disease; singer Joni Mitchell last week told Billboard magazine that she is being treated for the illness.
Doctors who believe the disease exists say it may be an syndrome that thrives in people with compromised immune systems. At least one researcher has been studying the condition for years.
Randy Wymore, an assistant professor of pharmacology and physiology who directs the Center for the Investigation of Morgellons Disease at the Oklahoma State University Center for Health Sciences, has been examining the "fibers" that seem to sprout from patients' skin lesions.
Although many doctors insist the fibers are merely bits of clothing fabric stuck to patients' scabs, Wymore found that samples from patients hundreds of miles apart were similar and were not known textile fibers. He said the "black spots" called "seeds" by some patients aren't pepper grains, as some dermatologists have assumed.
Wymore could not immediately be reached for comment, but in an interview with the Reno Gazette-Journal last year he said that Morgellons is a real disease and patients' suffering is made worse by doctors' disbelief.
He said some self-diagnosed Morgellons patients may be delusional but others definitely have the disease.
Yet, there is no accepted universal treatment or cure. Many patients find they are on their own.
"It's a lonely, isolated existence," said Mel Friedman, a Reno man who said he used two drugs and three homeopathic remedies to successfully treat the disease. "You find out who your friends are. Because no one knows how it spreads, some people won't get anywhere near you."
He said he hopes the CDC study bears fruit but doesn't have a lot of faith in the agency's ability to solve the medical mystery. He sees it as a plodding bureaucracy and part of the medical establishment that denies the illness exists.
But his doctor, Shannon Zamboni, said she's glad the federal agency is taking the disease seriously.
"Doctors want to help patients," she said. "But they can't do that if they don't know what's happening to them."