Bizarre Morgellons remains a mystery

CDC is investigating
New diseases emerge more frequently than most people realize. There has been roughly one per year since the 1970s. Some have a huge impact, such as AIDS; it has killed millions, but it surfaced as a strange pneumonia in five gay men in 1981. Others arrive with barely a ripple, such as the Dandenong virus, which killed three Australian women last year after they all received organs from an unknowingly infected donor.

But deciding whether a new disease exists is a long, contentious process of doing interviews, performing physical exams, conducting lab experiments, crunching data with computers, trawling textbooks for past cases and searching for a reasonable explanation if one isn’t immediately obvious. At the end of the process, disease detectives ideally want to end up with an agent — a bacterium, a virus, a genetic trigger or a toxin — that causes the symptoms they are seeing, a set of symptoms that only one thing can cause. An official designation as a disease means that sufferers are taken seriously; tests are devised to help make a diagnosis, treatments can be researched and insurance usually ends up paying for care.

The more cryptic the cause or symptoms are, the longer the process takes and the harder it is for the medical establishment to recognize a new disease. West Nile virus was a well-known, generally mild illness in Europe, Africa and the Middle East — but when the virus crossed the Atlantic in 1999 and caused brain inflammation in 59 New Yorkers, killing seven of them, doctors didn’t immediately recognize it because the symptoms were so different. Women complained of chronic pain, stiffness and fatigue for decades before organized medicine recognized the syndrome as fibromyalgia. For years afterward, rank-and-file doctors refused to diagnose it, in part because medical research has not uncovered a definite cause. “A lot of new diseases came up in the 20th century that people scoffed at,” says Howard Markel, M.D., professor and director of the Center for the History of Medicine at the University of Michigan Medical School in Ann Arbor.

So far, Morgellons has two strikes against its being recognized as a distinct disease: Hundreds of conditions share many of its symptoms, and no one can imagine what would make specks and fibers emerge from intact skin. What little has been written about it in the medical literature essentially says that Morgellons is delusional parasitosis, in which disruptions in brain chemistry cause the unshakable belief that organisms are digging into and sprouting from the skin. The itching and crawling sensations, the papers say, are the effect of neurons misfiring. The rashes are the result of patients obsessively scratching. And the fibers are environmental contaminants — pet hair, clothing fluff, fragments of dead insects—that collect on their sticky, self-inflicted wounds. In other words, it’s all in the patient’s head. Nevertheless, the authors say, doctors shouldn’t scold or correct patients who claim to have contracted Morgellons. Instead, they should establish rapport, so as to get the sufferers on the right psychiatric drugs.

Patients, naturally, feel patronized. With medical opinion so uniformly against them, they made their own Morgellons community on the Internet. There are two major organizations, the Morgellons Research Foundation and the Charles E. Holman Foundation, as well as 720 videos on YouTube and 20 groups on Yahoo! where people compare symptoms and discuss such topics as trying veterinary drugs as remedies. The online presence brings sufferers individual comfort and group power: The MRF claimed the CDC began investigating the syndrome in part because it was prompted by “more than 40 members of Congress” responding to its members’ letters.

Ironically, though, the virtual Morgellons community might be undermining the validation its sufferers are seeking. Medical history abounds with accounts of people getting sick because they heard or saw it happening to someone else, a phenomenon that used to be called hysteria and now goes by the more polite psychogenic illness. It has caused outbreaks of itching, fainting and difficulty breathing, along with mass panic attacks such as several in Africa and Asia in which hundreds of men came to believe that their penis was shrinking back into their body. Timothy F. Jones, M.D., an epidemiologist with the Tennessee Department of Health, investigated a 1998 episode in which 170 high school students and staff went to emergency rooms after smelling “toxic fumes” that were never proven to exist. He says psychogenic outbreaks spread rapidly, usually among people within sight of one another, and dissipate quickly when the affected people are separated.

That is not exactly what has happened with Morgellons. Its community accumulated over several years, and most of its members have never met. Still, cybersharing may have profound suggestive power. Chat groups and social-networking sites have been accused of fostering anorexia and suicide clusters. Morgellons accounts may have influenced psychologically vulnerable people to adopt the syndrome as their own — including people who are authentically sick but mistaken about the cause, Dr. Jones says.

That sufferers are sharing information about Morgellons on the Internet could also foil the search for an explanation. Epidemiologists consider unrelated people telling the same story to different doctors to be a reliable early warning signal of a new illness, but publicity is the medical equivalent of polluting the jury pool. That means when disease detectives question patients, their responses might be influenced by what they’ve heard, making some studies impossible to do. “Say you have an outbreak of food-borne illness,” Dr. Jones says. “If you ask people to tell you their symptoms, they might say, ‘Nausea and vomiting.’ But if you read them a list of symptoms, they will say, ‘Oh, I had that, too.’ It’s not a conscious thing; it’s the power of suggestion.”

But even if patients have altered their stories in the retelling, there are so many tales that investigators are nonetheless likely to listen. “If it’s just one person saying, ‘I got this rash’ or ‘I got these fiber lesions,’ that’s one thing,” says Dr. Markel, the medical historian. “If there are thousands of them, that’s another thing. That is very compelling and at least merits a hearing.”

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