When Joni Mitchell was admitted to the hospital this week after being found unconscious in her Los Angeles home, a controversial affliction she has long suffered with hit the headlines again.
She has yet to disclose the cause, but Mitchell, 71, has discussed a number of health complaints in recent years, including Morgellons disease — a mysterious illness that has been the subject of ongoing debate among medical researchers and patients.
“I couldn’t wear clothing. I couldn’t leave my house for several years,” she described in her 2014 book Joni Mitchell: In Her Own Words. “Sometimes it got so I’d have to crawl across the floor. My legs would cramp up, just like a polio spasm. It hit all of the places where I had polio.”
People who believe they suffer from Morgellons report a range of symptoms, including sensations of crawling or stinging on and under their skin, open sores, and the appearance of string-like fibers that seem to sprout from the sores. “Fibers in a variety of colors protrude out of my skin like mushrooms after a rainstorm,” Mitchell told The LA Times in 2010. “They cannot be forensically identified as animal, vegetable or mineral.”
Often, sufferers say their skin feels like it’s erupting from underneath, infested by insects, worms, or mysterious fibers. Like Mitchell, most say their symptoms are debilitating: they point to lesions that won’t heal, and say the biting and stinging that afflicts them every day leaves them fatigued and depressed, even affecting their memory.
“[It’s] as if you’re being bitten by fleas and lice,” Mitchell wrote in her book. “Morgellons is constantly morphing. There are times when it’s directly attacking the nervous system, as if you’re being bitten by fleas and lice. It’s all in the tissue and it’s not a hallucination. It was eating me alive, sucking the juices out. I’ve been sick all my life.”
According to the Centers for Disease Control and Prevention, Morgellons “is not currently recognized as a distinct clinical disorder with established diagnostic criteria that are generally accepted by the medical community.” The condition is not well understood, the CDC says, and most of what we know about it “is based on isolated case reports or anecdotal accounts.” But despite the controversy, it’s obvious that people with Morgellons are experiencing something that’s truly taking a toll on their quality of life.
The condition was first described in the 1600s, and then named in 2001 by an American, Mary Leitao, whose son’s itching couldn’t be remedied or explained by modern medicine. Leitao eventually scraped his skin and examined the samples under a microscope. She found fiber-like strands, which she determined “cannot be coming out of my son’s body,” she told the Pittsburgh Post-Gazette.
After getting frustrated by her doctors’ dismissive tones, she launched the Morgellons Research Foundation and began pressuring Congress to figure out what was going on. The movement gained traction in the United States in 2005, when lawmakers requested that the Centers for Disease Control and Prevention investigate.
Research findings on Morgellons
For the past decade, researchers have searched for a biological cause or single underlying factor that might explain the suffering. But they have mostly concluded that Morgellons is “a psychosis or mass-shared delusion.”
In one of the most comprehensive studies to date, published in the journal PLOS, researchers from the CDC collected detailed epidemiological information, medical histories, and skin samples from 115 Morgellons sufferers in Northern California. The fibrous material and solid objects were extracted and biopsied, and patients were given blood and psychiatric testing.
Although the CDC researchers did some observe some similarities among the patients, they did not find evidence of an underlying cause. Most of those who were studied fit the profile of a white woman in middle age, who reports overall fair to poor health. A majority reported chronic fatigue and displayed some cognitive impairments, such as memory loss or attention deficit.
A significant percentage of participants also had symptoms of depression and signs of “preoccupation” with health. Half tested positive for at least one illicit or prescription drug — including amphetamines, barbiturates, benzodiazepines, cannabinoids, cocaine, opiates and propoxyphene. Many drugs can cause sensory side effects, including the feeling of skin-crawling; however, it is not clear whether the drugs caused the symptoms or whether they were being used to deal with the disease.
Based on their analysis of the samples, the researchers concluded that the fiber-like strands were coming from external sources, such as from clothing or carpet that may have gotten stuck in an open wound. While some patients had sores, these appeared to have arisen from chronic picking and scratching, and their skin damage seemed to be caused by nothing more than sun exposure.
“No parasites or mycobacteria were detected,” the CDC researchers reported. “Most materials collected from participants’ skin were composed of cellulose, likely of cotton origin.” The researchers could not uncover any particular underlying medical condition or infectious source, and concluded that Morgellons is “similar to more commonly recognized conditions such as delusional infestation [also known as delusional parasitosis].”
In conclusion, the CDC wrote:
This comprehensive study of an unexplained apparent dermopathy demonstrated no infectious cause and no evidence of an environmental link. There was no indication that it would be helpful to perform additional testing for infectious diseases as a potential cause. Future efforts should focus on helping patients reduce their symptoms through careful attention to treatment of co-existing medical, including psychiatric conditions, that might be contributing to their symptoms.
The emphasis on some type of psychological cause is echoed by other research on Morgellons patients. One study, out of the Mayo Clinic, concluded: “Although patients are convinced that their skin is infested with parasites or inanimate material,” skin biopsies and specimen analyses turned up no evidence of infestation. The patients were probably suffering from delusional parasitosis — or the false belief that one is infected with parasites — the researchers determined.
Some recent research suggests that Morgellons may belong in the same family as tick-borne illnesses like Lyme disease — but this is a relatively new theory and the link hasn’t been confirmed by multiple studies. Additionally, some sufferers report that their Morgellons symptoms disappeared after taking a course of antibiotics typically used to treat infections from bacteria or protozoa. But doctors could argue, that could be explained by another great mystery: The placebo effect.
Relieving patients’ suffering should remain a priority
For now, delusional parasitosis is the most common diagnosis for Morgellons sufferers, with many skeptics arguing that this is just “a cultural entity spreading mainly on the internet.” (There are a few medical experts who think Morgellons is a real disease, but they are in the minority.)
Because the medical community is skeptical of Morgellons, most people self-diagnose with the help of Dr. Google. As a result, there is an active online community of Morgellons sufferers online. Many post photos of specimens on the Morgellons Research and Support Network‘s Facebook page and other social media.
Doctors, for their part, seem exasperated by the phenomenon. As Jeffrey Meffert, a dermatologist at the University of Texas Health Science Center in San Antonio, told Newsweek, “People with delusional parasitosis are very functional and rational except when it comes to this one issue.” He continued: “Many dermatologists would rather these patients never show up, because they don’t feel they have the time to spend. No one knows how to deal with them.”
Still, the issue hasn’t gone away, and likely won’t any time soon. For people like Mitchell, the lack of empirical evidence doesn’t diminish their suffering. They feel dismissed by most doctors and let down by modern medicine. Not having answers and lacking credibility is a large part of the problem, and something Mitchell hoped to combat.
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 said.
Indeed, there is evidence to suggest that some of these patients may be suffering from diagnosable physical conditions. As the Washington Post explains:
At the Mayo Clinic in Rochester, Minn., doctors are beginning to discover how imprecise a diagnosis of “delusions of parasitosis” can be. In the past five years, 175 people have been admitted to the clinic with that diagnosis. After thorough evaluations, however, with doctors taking the time to search for underlying problems, only half of those patients left the clinic with that diagnosis intact. Doctors found a very real cause of the itching in the other half.
Despite the controversy in the medical field, many doctors agree on one thing: Those who complain of Morgellons are suffering, and they need treatment. “It’s really important to discuss that there might be other ways to approach the disease,” Dr. Jason Reichenberg, director of dermatology at the University of Texas Southwestern-Austin, told USA Today.
Many times patients are advised to undergo psychological evaluation for depression or anxiety to deal with their symptoms, but that does little to alleviate pain. Other patients have reported some success with alternative treatments, but only after finding doctors who took their complaints seriously.
“Until we can find an exact cause or a cure, it’s important that we try to improve their suffering,” added Reichenberg.