In 2012, 15 researchers from a range of medical fields tried to wipe a disease off the face of the earth with a stroke of the pen.
The team, brought together by the Centers for Disease Control and Prevention (CDC), had spent the past six years attempting to answer a simple question: Was there any biological cause behind a long-controversial skin illness known as Morgellons? The bizarre ailment, according to its sufferers, caused incessant itching sensations, slowly healing lesions scattered across the body and mysterious brightly colored filaments that sprouted from underneath the skin.
The team interviewed 115 self-described Morgellons patients from Northern California and convinced 41 to undergo a battery of exams. It was a half-million-dollar effort that took two years to complete and four more to publish.
Try as they might, though, they couldn't find anything. The fibers were mostly made of cellulose—the basic building block of redwoods, algae and cotton T-shirts alike—supporting the common suspicion that bits of clothing had fallen into these patients' sores and been misidentified as something nefarious. And there was no evidence that infection caused the lesions or other commonly reported symptoms, like brain fog and fatigue. Politely implied by the researchers—but bluntly voiced by every outside observer—was that the only other likely cause of Morgellons was a delusional belief that manifests in self-inflicted wounds as the sufferers obsessively search for an affliction choking their body.
Less than a month after the study was released, the nonprofit Morgellons Research Foundation founded by Mary Leitao, the Pennsylvania woman who first named the condition after a cryptic reference to a 17th-century disease that caused "harsh hairs" to grow on a person's back, shut its doors. It had been just over a decade since she first spotted its symptoms in her 2-year-old son in 2001. Leitao disappeared from public view as well. But in the years since, the disease hasn't followed her lead. If anything, it's proliferating, thanks to the community-building power of the internet, and its sufferers have refused to go away, putting doctors in a delicate position.
"It seemed like it started along my elbow. My elbow kept itching and itching.… And then I got like little paper cuts underneath my fingernails. And, of course, with my hair, things were falling out," Debra Carver, 52, tells me over the phone in a harried, husky tone, describing her first experience with Morgellons this past November. "I guess it just feels like you have bugs underneath your skin, crawling around in these little tunnels."
After seeing a "red string or something red" fall from her hair while combing it one day, Carver was faintly reminded of something she had once heard: Morgellons. Soon, she found a private Facebook group for Morgellons sufferers. The forum confirmed her worst suspicions, but it also gave her a sense of relief. "If I didn't have that forum to be able to let some of this out and be able to talk to someone else who had this—without being told I'm schizophrenic or have mental illness—I don't know what I'd do," she says. Carver's forum is one of many active Facebook groups focused on Morgellons; the largest have thousands of members. The groups are a contemporary update to the message boards of the past that first brought sufferers together.
"The internet allows people to quickly find one another, start to compare stories and coalesce into a narrative that 'this can't all be in our heads, because we're all experiencing the exact same thing,'" says Kristin Barker, a sociologist at the University of New Mexico who has explored other controversial illnesses, notably fibromyalgia.
Meanwhile, though Leitao's organization is gone, other outspoken advocates are working to legitimize the condition. Perhaps the most prominent is the Charles E. Holman Morgellons Disease Foundation, which recently held its ninth annual Morgellons conference in Austin, Texas, in April. Its director, Cindy Casey-Holman, developed symptoms in the mid-2000s, and she and her husband, Charles, joined Leitao's crusade after seeing a news report on the condition. Eventually, the pair launched their own nonprofit in 2006. Holman and others reject the CDC's conclusions, believing the government agency is biased. "The CDC was against the whole idea from the start, without examining all the evidence," she says.
Holman's foundation and its affiliated researchers believe the bacteria responsible for causing Lyme disease, Borrelia burgdorferi, is at least partly behind Morgellons. A 2015 study funded by them found bacteria belonging to the Borrelia family in 24 out of 25 Morgellons patients tested.
But Peter Lepping, a consultant psychiatrist at the Center for Mental Health and Society in Wrexham, Wales, disagrees. He's one of the few doctors in the world to have extensively studied and treated the psychological condition most doctors think makes patients believe they have Morgellons: delusional infestation. Early accounts of the disorder date back centuries, and the predominant theme of delusion has shifted from worms and mites to bacteria and viruses in the 20th century. "But the essence is the same. You still think you're infested by something that isn't there," explains Lepping, who firmly adds that Morgellons is only its latest flavor. And he warns against granting the research promoted by the Charles E. Holman Morgellons Disease Foundation any credibility.
For instance, advocates claim to have debunked the assertion that Morgellons filaments are simply clothing fibers, pointing to their findings made under a highly powered electron microscope. But Lepping notes that even if these held up, they still wouldn't prove the disease is physical in nature. More recently, a March 2016 study by Italian researchers used the same technique to examine the filaments from a sufferer and echoed the CDC's conclusions. Lepping also explains that the positive tests for Lyme touted by advocates don't necessarily mean anything. "It just means that you've been exposed to Lyme at some point in your life. But most people who have been exposed don't have any symptoms." The CDC study, using the gold standard for Lyme detection, found zero concrete cases in its sample.
"The irony is that when patients come to us and they say they have an infestation, which is a medical problem, we say, 'Yes, indeed, you do have a medical problem—it's just not an infestation. It's a change in your brain,'" he adds. "But that doesn't reassure them."
Lepping doubts that the increase in people claiming Morgellons corresponds to an increase in delusional infestation, a rare disorder that may afflict an estimated 29,000 Americans. In other words, it's not that more people are coming down with delusions than usual. It's that now more believe they have Morgellons instead. And the label's enduring presence—there are at least 20,000 self-identified Morgellons sufferers, and the number of people contacting the Charles E. Holman Morgellons Disease Foundation has more than quadrupled in the past five years, according to Holman—has made getting through to delusional infestation patients harder, he says. Normally, a victim of delusion may reluctantly take antipsychotics after seeing a doctor or two, he explains, and heal. "But if you've spent days and weeks and months in certain chat rooms that convinced you that this is Morgellons, and it can't be anything else, and all your doctors are stupid, then it's much more difficult to reach you."
The treatment studies of delusional infestation patients, small and scattered as they are, are incredibly positive. The vast majority of patients given second-generation antipsychotics (typically in much lower doses than needed for conditions like schizophrenia) experience relief. "Some people recover full insight and will come back to you and say, 'OK, I understand that I had delusional infestation, and now I'm better.' But that's a minority," Lepping says. "Most people will say, 'Doctor, you know what? The bugs are gone, and they don't seem to bother me anymore. I think I probably had an infestation, but it doesn't seem to bother me now.' And that's OK for us because we just want people to be better."
Barker notes that the discrimination faced by those suffering mental illness may partly explain why those with Morgellons struggle so mightily to avoid being thought of as delusional.
Like the patients the CDC examined a decade ago, Debra Carver is from California. And she too has felt ostracized by the doctors she's seen. "She thinks I'm crazy, I'm delusional," she says of her latest primary care physician. Her last visit left her fearful that she would soon be institutionalized. After divulging that the doctor prescribed her Zyprexa, the brand-name version of olanzapine, as well as an antibacterial skin cream, Carver asks me what she should do. Choosing my words carefully, I say that people who have a delusion typically get better after they finish taking those drugs, but she should work with her doctor to figure out what works best for her. She responds that she's committed to taking them for at least two months, and that the cream has already made her feel much better.
"It's all about hope. Hope. If you don't have hope and faith, you're not gonna make it," she says at the end of our call, her voice starting to fade. "That's the biggest key of this whole thing: Someone to listen and pay attention to what you're saying. To believe you."
