Erin Allday, Chronicle Staff Writer
January 17, 2008
Bay Area researchers are beginning the first major U.S. study into a mystery disease known for its frightening symptoms - among them, open sores and unidentifiable objects poking out of the skin - that doctors have long suspected is all in patients' heads.
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 research will be funded by the U.S. Centers for Disease Control and Prevention.
Researchers are hoping to come up with a more specific definition of Morgellons and how prevalent it is in the Bay Area, which has one of the largest concentrations of self-reported cases of the disease in the country.
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.
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.
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.
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.
"This is a descriptive study. There are no hypotheses to be tested," said Joe Selby, director of Kaiser's Northern California division of research. "We recognize that many people in the United States are currently suffering with symptoms and they are very frustrated as to whether there is evidence of their disease."
More information about Morgellons can be found at:
Information about Morgellons
Q: What is Morgellons?
A: It's a mysterious condition primarily marked by skin disorders. The CDC refers to it as an "unexplained dermopathy."
Q: What are its symptoms?
A: 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.
Q: What are common diagnoses of Morgellons symptoms?
A: Many doctors do not believe Morgellons exists, and patients are sometimes diagnosed with skin conditions such as scabies or eczema; Lyme disease; or delusional parasitosis, a psychiatric condition.
Q: Is there a treatment?
A: There is no standard treatment.
Q: How many people have Morgellons?
A: The Morgellons Research Foundation reports that 10,000 families in the United States have registered claiming at least one family member has the disease. Of those families, 150 to 500 are in the Bay Area.