CDC study finds no infectious cause for mysterious Bay Area illness
KTVU And Wires
ATLANTA, Ga. —
Imagine having the feeling that tiny bugs are crawling on your body, that you have oozing sores and mysterious fibers sprouting from your skin.
Sound like a horror movie? Well, at one point several years ago, government doctors were getting up to 20 calls a day from people saying they had such symptoms.
Many of these people were in California and one of that state's U.S. senators, Dianne Feinstein, asked for a scientific study. In 2008, federal health officials began to study people saying they were affected by this freakish condition called Morgellons.
The study cost nearly $600,000. Its long-awaited results, released Wednesday, could identify no common underlying medical condition or infectious source for Morgellons.
"We found no infectious cause," said Mark Eberhard, a Centers for Disease Control and Prevention official who was part of the 15-member study team.
The study appears in PLoS One, one of the Public Library of Science journals. The study can be accessed at the PLoS One website.
Sufferers of Morgellons (pronounced mor-GELL-uns) describe a variety of symptoms, including fatigue, erupting sores, crawling sensations on their skin and — perhaps worst of all — mysterious red, blue or black fibers that sprout from their skin. Some say they've suffered for decades, but the syndrome wasn't named until 2002, when "Morgellons" was chosen from a 1674 medical paper describing similar symptoms.
Afflicted patients have documented their suffering on websites and many have vainly searched for a doctor who believed them. Some doctors believe the condition is a form of delusional parasitosis, a psychosis in which people believe they are infected with parasites.
Last May, Mayo Clinic researchers published a study of 108 Morgellons patients and found none of them suffered from any unusual physical ailment. The study concluded that the sores on many of them were caused by their own scratching and picking at their skin.
The CDC study was meant to be broader, starting with a large population and then went looking for cases within the group. The intent was to give scientists a better idea of how common Morgellons actually is.
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8/7/2007 – CDC Requests Bay Area Morgellons Study (Source)
OAKLAND, CA — KTVU Channel 2 has learned the federal Centers for Disease Control has asked Kaiser Permanente to begin the nation’s first epidemiologic study of “Morgellons Disease,” a mysterious ailment that the government terms an “unexplained and debilitating condition that has emerged as a public health concern.”
Doctors Make Progress With Mysterious Disease
OAKLAND —
A horrifying and fascinating disease is affecting thousands of people in the Bay Area, along the Gulf Coast and in Florida. Though some doctors have claimed the malady is psychosomatic, other scientists are making headway unraveling the mystery of Morgellons Disease.Former Oakland A's pitcher Billy Koch has it. And so do his wife and their three children. And though they can afford top medical care, doctors have no answers.
It started in Oakland four years ago. Koch saved 44 games and was the top reliever in the major leagues. His fastball wowed crowds. And then the strangeness began.
"He freaked out. He wanted to ignore it … I wanted to too. But when it comes to your kids, you gotta stop ignoring it," said Koch's wife Brandi.
She describes their symptoms: "It was the scariest thing I had ever realized in my entire life. There was matter and black specks coming out and off of my skin."
Within two years -- at age 29 -- Billy Koch was out of baseball, partly because of the uncontrollable muscle twitching that went on for months at a time and often kept up him up all night.
The disease is characterized by slow healing skin lesions that often extrude small, dark filaments, especially after bathing.
"That's when it would really just ooze -- literally ooze out of my skin," explained Brandi Koch.
The couple was at wit's end after numerous doctors not only provided little in the way of relief, but actually were skeptical about their health problems: "There's no reasonable explanation for it. I'm not seeing things. l'm watching it happen. We're pretty sane people…" lamented Billy.
CDC Requests Bay Area Morgellons Study
OAKLAND —
KTVU Channel 2 has learned the federal Centers for Disease Control has asked Kaiser Permanente to begin the nation’s first epidemiologic study of "Morgellons Disease," a mysterious ailment that the government terms an "unexplained and debilitating condition that has emerged as a public health concern."
KTVU Health and Science Editor John Fowler was the first in the nation to report on this “mystery disease” as it was called in 2004. He reported the skin disorder seemed to cause fibers and filaments to emerge from the skin of sufferers, and also seemed to cause neurological problems patients described as "brain fog."
John followed up with other reports, and founders of a non-profit group hoping to help sufferers understand the disease named it Morgellons. As of February this year, the Morgellons Research Foundation has identified more than ten thousand families nationwide. John profiled former A’s pitcher Billy Koch who says both he and his wife have symptoms.
CDC Launching Investigation Of Morgellons Disease
ATLANTA —
Imagine your body pocked by erupting sores. The sensation of little bugs crawling all over you. And worst of all, mysterious red and blue fibers sprouting from your skin.
It may sound like a macabre science fiction movie, but a growing legion of Americans say they suffer from this condition. And now the U.S. Centers for Disease Control and Prevention is investigating.
Some doctors dismiss these patients as delusional. But the condition -- called Morgellons -- has caused a small frenzy on the Internet, with hundreds of people pleading for help.
"Sometimes the government doesn't want to panic people until they can figure out a definitive cause," said Pat Boddie, a 62-year-old Alabama woman who said she's had Morgellons for 14 years.
"They're trying to figure out if this is going to be an epidemic. I hate to tell them, but it already is," she said.
The CDC has been receiving as many as 20 calls a day from self-diagnosed Morgellons patients. The agency has been urged to investigate by, among others, U.S. Sen. Dianne Feinstein of California.
"We're going into this with an open mind," said Dan Rutz, spokesman for a CDC Morgellons task force that began meeting in June.
But so far there is no evidence of an infectious agent, and health officials say there is not yet enough evidence even to call it a disease.
People claiming to have Morgellons report a wide variety of symptoms, ranging from joint pain to irregular bowel movements. But most describe crawling sensations along the skin, sores, fatigue, "brain fog," and the appearance of small or microscopic fibers on or under the skin.
Some say they've suffered for decades, but the syndrome did not get a name until 2002, when the name "Morgellons" (pronounced mor-GELL-uns) was chosen by Mary Leitao. The South Carolina woman, who said her son suffers from the condition, founded the Morgellons Research Foundation.
She found the name in a 1674 medical paper that described a condition called Morgellons, with symptoms somewhat like her son's. So she began using the name. "I never expected it to stick," she said.
Leitao's organization has become a leading source of information and research advocacy, but it too has become controversial.
Last week, at least three of the eight members of the organization resigned over disagreements with Leitao, the executive director, about how she's been running the foundation. One member -- the board's chairman -- sent a letter to the U.S. Internal Revenue Service, saying Leitao had failed to produce requested financial records and he voiced suspicions of financial impropriety.
U.S. Orders Study Of Bizarre Morgellons Condition
UNDATED —
It sounds like a freakish ailment from a horror movie: Sores erupt on your skin, mysterious threads pop out of them, and you feel like tiny bugs are crawling all over you.
Some experts believe it's a psychiatric phenomenon, yet hundreds of people say it's a true physical condition. It's called Morgellons, and now the government is about to begin its first medical study of it.
The U.S. Centers for Disease Control and Prevention is paying California-based health care giant Kaiser Permanente $338,000 to test and interview patients suffering from Morgellons' bizarre symptoms. The one-year effort will attempt to define the condition and better determine how common it is.
The study will be done in northern California, the source of many of the reports of Morgellons (pronounced mor-GELL-uns). Researchers will begin screening for patients immediately, CDC officials said Wednesday. A Kaiser official expects about 150 to 500 study participants.
Morgellons sufferers describe symptoms that include erupting sores, fatigue, the sensation of bugs crawling over them and -- perhaps worst of all -- mysterious red, blue or black fibers that sprout from their skin. They've documented their suffering on Web sites.
Some doctors believe the condition is a form of delusional parasitosis, a psychosis in which people believe they are infected with parasites.
In the study, volunteers will get blood tests and skin exams, as well as psychological evaluations, said Dr. Michele Pearson, who leads a CDC task force overseeing the study.
