A major new study of the straight-out-of-science-fiction syndrome known as Morgellons will be launched in Northern California, federal health officials said Wednesday.
The U.S. Centers for Disease Control has contracted with Kaiser Permanente Northern California to investigate the mystery disease which makes sufferers feel like bugs are crawling under their skin. Symptoms include itching, biting and crawling sensations and red, blue or black filaments that emerge from skin lesions.
“The cause of this condition is unknown,” Dr. Michele Pearson, principal investigator with the CDC, said during a telephone news conference Wednesday. “Those who suffer from this condition, as well as their families and physicians, have questions, and we want to help them find meaningful answers.”
The San Francisco Bay Area is believed to be one of the nation’s hot spots for the malady, according to a patient registry maintained by the Morgellons Research Foundation, an advocacy group. Others include the Los Angeles region, Texas and Florida.
Scientists and doctors continue to debate whether Morgellons (pronounced mor-GELL-uns) represents a real, physical disease or is a type of mental illness. People suffering from the syndrome are typically treated with psychiatric drugs, although one clinic in Texas has treated patients with long-term antibiotics.
In addition to the feeling of bugs crawling under the skin and the mysterious fibers, patients also complain of fatigue, joint pain, hair loss, vision problems and difficulty in thinking clearly.
The syndrome was dubbed Morgellons in 2002 by Mary Leitao, a Pittsburgh biologist who drew the name from a centuries-old medical paper describing what may be a related illness. Leitao, founder of the Morgellons Research Foundation, believes one of her children exhibited Morgellons symptoms.
Dermatologists, however, define the syndrome as a form of “delusional parasitosis,” and note its association with schizophrenia, obsessive behavior, bipolar disorder, depression and anxiety disorders.
Skeptics of Morgellons believe that the fibers or filaments patients say originated in their skin are actually tiny cotton fibers from clothing or household dust. The skin lesions reported by some patients are actually self-induced from itching sensations that may have some other physical cause, skeptics say.
Still, patients’ suffering is undeniably real, said Pearson. The CDC has been planning the rigorous Morgellons study since 2006 and has been looking into the syndrome since 2002.
In recent years, Pearson said, the federal health agency has received a growing number of inquiries from patients and physicians about the syndrome. Last year, the agency logged about 1,200 inquiries about Morgellons. For now, the CDC is calling the malady “unexplained dermopathy.” Perhaps to ease tensions between skeptics and believers in Morgellons, the agency has removed a page on Delusional Parasitosis from its Web site.
The new study, which will begin immediately, will involve people who sought care for Morgellons-like symptoms at Kaiser Permanente’s Northern California facilities between July 1, 2006 and Dec. 31, 2007. Kaiser will receive $338,000 from the CDC for the study.
Of Kaiser’s 3.4 million members in Northern California, 150 to 500 people may qualify for the study, said Dr. Joe Selby, director of Kaiser Permanente-Northern California’s Division of Research. The study will not accept additional volunteers.
Eligible patients will be contacted and asked to take a survey of their symptoms and other factors that may be related to the syndrome. Patients also may be asked to volunteer for comprehensive medical examinations, including skin biopsies, mental health screenings and blood tests. The Armed Forces Institute of Pathology also will assist with the study.
Mary Leitao, the Morgellons advocate, said she was “very pleased” to hear that the study is finally under way.
“It’s difficult enough to be sick,” Leitao said, “but to also have to fight the perception that your illness isn’t real is very disheartening for people.”
IF YOU’RE INTERESTED
More information is available at www.cdc.gov/unexplaineddermopathy/ or (404) 718-1199.
