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'Morgellons Disease' Is Creepy. But Is It Real?

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January 24, 2008

The symptoms associated with Morgellons disease are alarming: skin lesions, colored threads of unknown origin under the skin, intense itching, reports of worms crawling out of eyeballs. Thousands claim to be sufferers of the condition, while most doctors dismiss Morgellons as a delusion.

One thing everyone can agree on is that those who claim to have Morgellons disease are suffering. The question is: From what?

The Centers for Disease Control and Prevention announced plans last week to learn more about Morgellons through a study with health care provider Kaiser Permanente in California, an area where many Morgellons sufferers are clustered.

"Our position is to be, quite frankly, open minded and objective. We're approaching this as we would approach any other investigation of an unknown or unexplained condition," said Dr. Michele Pearson, lead investigator of the CDC study. "We want to take a scientifically rigorous approach to try and figure this out."

After finding no satisfactory diagnosis for strange lesions on her son's face, Mary Leitao discovered strange fibers in the lesions. Dismissed by doctors, she found references to a disease called Morgellons in the 16th and 17th centuries that counted "harsh hairs" among its symptoms. She started a Web site seeking fellow sufferers, and to date more than 11,000 families have registered.

That there is so much self-diagnosis of Morgellons contributes to the skeptical attitude most doctors take toward the condition. Sufferers bringing in fibers as physical evidence doesn't help.

"When you go to medical school, you are trained that if somebody comes into your office ... if somebody brings you a Ziploc baggie full of stuff, it's called the Ziploc baggie sign, and ... you're crazy," says Washington Post reporter Brigid Schulte, who has been following the Morgellons phenomenon.

Pearson says the CDC study, in addition to addressing the nature of the "unexplained dermopathy," has other aims.

"One thing we've heard quite clearly from people affected with this condition is that they often go see a provider, [and] the provider has never heard of this condition ... so one thing we hope to do is raise awareness that this does exist."

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