Morgellons Disease, a mysterious disease marked by strange skin eruptions, if finally getting attention from researchers. The U.S. Centers for Disease Control and Prevention (CDC) is paying California-based Kaiser Permanente $338,000 to test and interview patients suffering from Morgellons, a bizarre and recently emerging skin disorder. The CDC began the collaborative study to determine whether Morgellons is a legitimate illness or patient imagination. Both Kaiser and the CDC will gather information about the illness, including common symptoms, possible causes, and risk factors and will look only at patients in northern California, the state with the highest number of self-reported cases.
Biochemist Vitaly Citovsky of Stony Brook University has been studying Morgellons for a year. A range of symptoms, including non-healing skin eruptions, characterizes the disorder, called Morgellons by some and fiber disease by others. Patients report stringy, fibrous, and seed-like granules and/or black speck-like material emerging from lesions. Lesions range from minor to disfiguring and may not heal. “It’s not recognized officially as a medical condition,” Citovsky said Monday. “Our dermatology department does not recognize it. Many people who are affected have bizarre, inconceivable symptoms.” Citovsky said doctors have no idea whether to categorize it as a disease with a specific cause, a syndrome with several components, or an emotional problem.
Patients also report odd skin sensations, such as stinging, crawling, and biting; some cite joint pain, Chronic Fatigue Syndrome, and Fibromyalgia; others cite problems with concentration and memory, including changes in cognition, memory loss, mood disturbance, and neurological manifestations. A few report live worms or fibrous material bursting through their skin.
Morgellons is a poorly understood condition a growing number of physicians believes to be a chronic infectious disease, but which is not yet fully recognized by the medical community. “Many consider it a psychiatric problem,” Citovsky said. “However, there might be something that they develop,” he added, whose laboratory analyses discovered the chemical make-up of the fibers. “They’re made up of polysaccharides, sugars; long chains of sugar molecules. The problem is the people who deny the existence of the disease. They say this is lint or dirt that people find on their skin, but it’s not dirt, it’s not lint, it’s not twigs. But on the other hand, it is not a living creature.”
Citovsky received samples of the fibrous material last year from San Francisco physician Raphael Stricker. Stricker wrote the first paper on Morgellons, along with biologist Mary Leitao, whose son suffered from the disorder and who named the disorder after she found a medical history book reference on a 17th century disease in which fibrous material emerged from people’s skin. She now runs a Morgellons foundation in Pennsylvania. Stricker sent samples of the material to Citovsky’s lab because he thought the Stony Brook biochemist could produce answers. Citovsky received a small grant from Morgellons Research Foundation and said the CDC rebuffed him when he offered to share his research, hoping to join the effort. “I said, ‘We’re doing a little work on this, and do you want to know what we’re doing?’ They said no.”
At this time, the cause of Morgellons is unknown and there is no cure.
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