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Morgellons, the Mysterious Disease Being Studied in US

by Medindia Content Team on Jan 18 2008 12:19 PM

The first major study of the mysterious and frightening Morgellons has been taken up in the US. It is a condition primarily marked by skin disorders. The Centers for Disease Control and Prevention (CDC) refers to it as an "unexplained dermopathy."

Unexplained sores that won't heal; materials protruding from the skin that look like thin, multicolored threads or black sand; chronic fatigue; "brain fog," including difficulty concentrating and short-term memory problems; muscle and joint pain; sensation of something crawling beneath the skin.

The study into Morgellons will start immediately, as Kaiser Permanente contacts Northern California patients who have reported symptoms of the mystery disease in the past 18 months. The region seems to have one of the largest concentrations of self-reported cases of the disease in the country.

The research will be funded by the CDC.

Researchers are hoping to come up with a more specific definition of Morgellons and how prevalent it is in the Bay Area, which They also hope to determine once and for all whether Morgellons is a psychiatric condition."The suffering and the impact of this condition on people's lives, whatever you want to label it, what they're experiencing is real," said Michele Pearson, a principal investigator with the CDC. "That's why this agency has decided to look into it in-depth."

The CDC is not yet agreeing that Morgellons is a medical condition, but Pearson said there's no debating that people are ill and need help.

In addition to the skin problems, symptoms of Morgellons include fatigue, confusion and memory problems, joint pain and a sensation of pins and needles or something crawling on the skin.

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Many doctors believe that Morgellons is actually a psychiatric condition called delusional parasitosis. They say the filaments that patients report growing out of their skin are actually lint or threads from clothing, and the open sores are caused by patients scratching at skin when they perceive a crawling sensation.

San Francisco resident Pat Miller has been to more than a dozen doctors since he first developed symptoms several years ago. He's been diagnosed with a wide variety of skin conditions, as well as delusional parasitosis, and few doctors have been willing to consider Morgellons.

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He said the Kaiser study, no matter the outcome of it, feels like validation of what he's been going through.

"It sounds to me like if they're involving Kaiser in this study and tracing it in a systematic, methodical way, that pretty much means that, yeah, they think there's something going on," Miller said. "I've developed this lack of love for doctors and health care systems. You pretty much have to become your own doctor."

Unofficial reports of Morgellons are becoming more common, said Pearson. The CDC has taken 1,200 calls in the past year from patients who believe they have Morgellons, and at Kaiser, doctors are increasingly frustrated trying to diagnose a condition with no known cause or treatment.

"There are many hypotheses as to what may be causing it, but there is no textbook on this condition," Pearson said. "It's been a very frustrating journey, not just for patients but also for the physicians treating them."

Patients have been reporting Morgellons symptoms to the CDC regularly for the past three or four years, although it's possible the condition has been around for centuries. A South Carolina mom who believes her three children have the illness found a reference to a similar disease in a 1674 medical study. The disease was called Morgellons in 1674, and modern-day sufferers adopted the name, reports San Francisco Chronicle.

The CDC does not officially report cases of Morgellons. The nonprofit Morgellons Research Foundation says that more than 10,000 families in the United States have registered with the Web site, claiming at least one family member has the disease.

About 24 percent of registered families are in California, and the Bay Area is one of several hot spots in the country. The research foundation estimates that 150 to 500 people in Northern California have Morgellons.

The Kaiser study will perform medical exams - including dermatological tests, blood analysis and psychiatric evaluations - at offices in Oakland. Researchers hope to carefully examine skin biopsies and any fibers or other materials that patients report growing out of their skin.

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