Joni Mitchell was hospitalized this week, but the songwriter has been sick for years. She has described her debilitating illness as “a slow, unpredictable killer–a terrorist disease. It will blow up one of your organs, leaving you in bed for a year.” Yet doctors have described this same illness as an internet meme, a delusion spread online.
Mitchell is talking about Morgellons disease, a condition where people report their skin crawling with parasitic, foreign fibers, often sprouting out of sores and lesions, in addition to fatigue and other health problems associated with itching skin. Morgellons is emphatically not accepted by the medical community. In fact, many doctors and researchers credit the internet with creating the conditions to spread Morgellons self-diagnoses as a kind of digital folie a deux. “It seems to be a socially transmitted disease over the Internet,” mass delusional specialist (yup, that’s a thing) Robert E. Bartholomew told the Los Angeles Times in 2006.
In 2008, a panel of doctors answered questions about Morgellons for the Washington Post. Dr. Jeffrey Meffert explicitly pinpointed the internet and digital communities as the reason why the idea of the disease caught on, saying the disease “has only existed as long as high speed internet.” Skeptics don’t see Morgellons as a virus, but see it as a misbelief gone viral.
In 2012, the U.S. Center for Disease Control investigated Morgellons and concluded that it is psychosomatic. A CDC spokesperson told me the center is no longer tracking reports of Morgellons since it published the study.
Many doctors believe that people who self-diagnose with Morgellons have delusions of parasitosis and infestation, and are inflicting their abrasions on themselves. In other words: It’s all in their heads.
Screenshot from CDC
People who identify as Morgellons patients—or “Morgies”—are upset by this assessment. So where do people go when they feel like the medical community rejects them? Online. People who have what the CDC called “unexplained dermopathy” are largely self-diagnosed through web searches, or diagnosed by others in the community over the internet. The term “Morgellons” spread online because a Pennsylvania woman named Mary Leitao blogged about her son’s inexplicable skin ailment and called it “Morgellons” in 2002, naming it after an obscure condition described in the 1600s.
The majority of Morgellons patients have reported symptoms after 2002, leading some skeptical doctors to believe that the information about Morgellons on the internet was infecting people with a mass delusion, not providing a framework to understand why they felt sick.
Feeling betrayed by modern medicine, people have been amassing a crowdsourced unofficial digital literature on the disease. They’ve organized into groups like Morgellons Research Network, Leitao’s now-defunct Morgellons Research Foundation, and the Charles E. Holman Morgellons Disease Foundation. Joni Mitchell has even talked about quitting music to devote her energy to publicizing Morgellons. Looking through Morgellons support groups and forums, there’s a clear emphasis on proving that Morgies aren’t simply cuckoo; people are obsessive about documenting their fibers in photographs and videos.
Screenshot from Facebook
The persistence of the community’s digital outcry is the reason why the CDC formed a million-dollar, multi-year taskforce to research the illness.
The fact that the CDC eventually concluded that the problem was likely psychological at the end of the study has not deterred believers from continuing to clamor for a cure.
Delusion or not, paranoia abounds
Some of the efforts to prove that Morgellons is real have an undeniable conspiracy theorist vibe. It doesn’t help that some fringe groups believe that Morgellons is caused by chemtrails.
Over 14,000 people have registered with the Morgellons Research Foundation. The majority are women. While there are definitely some paranoid conspiracy Morgies in the bunch, many are simply struggling to understand why doctors cannot explain why they itch without concluding that it’s a symptom of a psychological issue.
So is it fake or what
There is an argument to be made—and it is being made, from people who are both Morgellons sufferers and doctors, like Dr. Greg Smith—that the delusion diagnosis is wrong. Dr. Anne Louise Oaklander, a Harvard Medical School associate professor who studies neurology and itching, told the Guardian that this is a case of a misdiagnosed group of people:
“In my experience, Morgellons patients are doing the best they can to make sense of symptoms that are real. They’re suffering from a chronic itch disorder that’s undiagnosed. They have been maltreated by the medical establishment. And you are welcome to quote me on that,” she adds.
Looking at the conspiracy theorist tendencies of some Morgellons patients and the lack of medical evidence pointing to a physical ailment, it’s tempting to dismiss the disease as a brand of crazy perpetuated by the web. But we don’t know whether this constellation of illnesses people call Morgellons is psychologically or neurologically based.
Even if the medical community never finds a physical root cause for Morgellons, the pain felt by people who identify as having it is clearly real. Joni Mitchell is not malingering. And whether or not the internet contributed to the prevalence of Morgellons complaints, it is definitely serving as a support system for a fringe community desperate to be heard.
Photo collage of Morgellons lesions via David/Flickr (CC BY-SA 2.0)
Contact the author at kate.knibbs@gizmodo.com.
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