Disease or delusion? Skeptics say lesions in Morgellons disease (left) are similar to those caused by patients' neurotic scratching and picking (right). Credit: Interactive Medical Media, LLC

She felt as if something were crawling on her. The skin on her arms, legs and face erupted into lesions, harboring what looked like small eggs and creatures with flagella; and stiff, white, cotton-like threads emerged from her thighs. She tried spraying herself down with vinegar and slathering on scabies cream bought off the Internet.

But the worst part, says Susan—she prefers not to use her last name—was that no one believed her.

Then a few months ago she found an online community, all of whom suffered similar ghoulish symptoms, and had christened their condition 'Morgellons disease.' The virtual Morgellons Research Foundation has around 5,000 registrants.

“I felt so relieved,” she says. “I found all these people talking about the same thing I was.”

There really is no scientific basis at this point to believe that this is real. Stephen Stone, American Academy of Dermatology

After months of futile campaigns—and claims of a cover-up by the government—she and her fellow sufferers can claim a small victory: in June, the US Centers for Disease Control and Prevention (CDC) began investigating the phenomenon.

The agency plans to first define Morgellons with a set of criteria that distinguishes it from other illnesses. “It is likely that for many of these people, they can be helped through another case definition,” says Dan Rutz, a CDC spokesman.

Rutz is being diplomatic.

Most dermatologists deny the disease exists, saying the people who claim to suffer from it have either common skin illnesses or psychological disorders such as delusional parasitosis, in which people become irrationally convinced that they harbor parasites. In such disorders, people often have lesions, but those are caused by the patients' own scratching and picking.

“There really is no scientific basis at this point to believe that this is real,” says Stephen Stone, president of the American Academy of Dermatology. Many patients with symptoms similar to Morgellons respond well to antipsychotics, Stone says. But “admittedly, there are some that did not. I guess you have to keep an open mind to the possibility that something is going on.”

Noah Scheinfeld, assistant clinical professor of dermatology at Columbia University, says patients sometimes come in with pieces of their skin mixed with other materials in a box or a piece of Saran Wrap.

“Such patients are a challenge to help and to treat,” he says. “They want to be believed above all and tend to be socially isolated.” Scheinfeld says the Internet has helped those with parasitic delusions to band together and reinforce each others' beliefs.

To the sufferers, nothing could be more real. In her most recent email, Susan said light yellow worms were crawling out of her face and black crud was oozing from her pores. “I'm in tears, I'm afraid, I'm screaming I am so scared and distraught,” she said.

At least one scientist—albeit not an expert in the field—is taking it seriously. Morgellons patients have masses of dark fibers visible at×60 magnification under the unbroken skin, while unaffected individuals do not, says Randy Wymore, assistant professor of pharmacology at Oklahoma State University. “That took away any possibility that this was not a real thing,” Wymore says.

Wymore usually works on potassium channels but is now planning to investigate the nature of the fibers, which he says are quite unlike those from textiles. “This is quite a mystery,” he says. “It is both intellectually intriguing and frightening. We cannot be so intellectually arrogant as to believe there is nothing new under the sun.”