Joni Mitchell and the mystery of Morgellons disease
The hospitalization of music legend Joni Mitchell on Tuesday night shocked and worried millions of fans. Mitchell was found unconscious at her home and rushed to the emergency room, but the nature of her illness is still unconfirmed. The incident revived concern about an odd and mysterious health condition Mitchell has spoken about suffering in the past. It is known as Morgellons disease, and it reportedly affects some 13,000 people in the U.S. It's in fact so mysterious and odd that the consensus in the majority of the medical community is that Morgellons doesn't actually exist.
People who complain of Morgellons disease cite a number of symptoms, but the primary issue is the presence of colorful fibers or "filaments" that sprout from lesions or appear under the skin. Symptoms of Morgellons -- named from a 1674 medical paper that described similar symptoms -- also include sensations of itching, biting or crawling on the skin, as well as chronic fatigue, joint pain, difficulty with memory and thinking, mood changes and some neurological problems.
In 2010, Mitchell told a reporter at the Los Angeles Times that she has a "weird, incurable disease that seems like it's from outer space." She said the condition is the reason why she often hides from the public eye. Mitchell described seeing "fibers in a variety of colors protrude out of my skin like mushrooms after a rainstorm: they cannot be forensically identified as animal, vegetable or mineral."
"Morgellons is a slow, unpredictable killer -- a terrorist disease: it will blow up one of your organs, leaving you in bed for a year," she continued. "Morgellons is always diagnosed as 'delusion of parasites,' and they send you to a psychiatrist. I'm actually trying to get out of the music business to battle for Morgellons sufferers to receive the credibility that's owed to them."
Over the years, the U.S. Centers for Disease Control and Prevention has made efforts to respond to the Morgellons community by conducting investigations, and even at one point enlisting the U.S. Armed Forces Institute of Pathology and the American Academy of Dermatology to help with research. A handful of studies suggest Morgellons is simply an indication that a person may need to seek treatment for depression, skin-picking disorder, anxiety and even substance abuse.
One paper published in 2012 in the respected, peer-reviewed journal PloS One -- "Clinical, Epidemiologic, Histopathologic and Molecular Features of an Unexplained Dermopathy" -- identified 115 patients from Kaiser Permanente in California who reported symptoms of the condition. The median age of the Morgellons sufferers was 52, though ages ranged from 17 to 93 years old. A majority were female and white. More than half reported overall fair or poor health, while 77 percent said they suffered from chronic fatigue. The researchers identified cognitive deficiencies in 59 percent of the patients and "clinically significant" somatic complaints -- a fancy term for hypochondria -- in 63 percent.
Physical symptoms also appeared to be questionable to the researchers. Half of hair samples analyzed in the study were found to have drug traces and half the patients had sun damage to skin.
In the study, patients with skin lesions were found to have some type of bug bite (such as fleas, bed bugs or mosquitoes) or self-inflicted wounds from chronic skin picking. The researchers did not collect any specimens that could be categorized as parasites; the main substance identified in samples of skin fibers was cellulose, most likely particles from cotton clothing.
At the completion of the $600,000 study, the researchers still weren't convinced: "This unexplained dermopathy was rare among this population of Northern California residents, but associated with significantly reduced health-related quality of life. No common underlying medical condition or infectious source was identified, similar to more commonly recognized conditions such as delusional infestation," they wrote at the conclusion of their study.
Cindy Casey Holman, a registered nurse and the director of the Charles E. Holman Morgellons Disease Foundation, says the study was flawed and that the bacteria Borrelia burgdorferi (Bb) has been cultured from Morgellons skin lesions.
"A serious and often deadly systemic infection is present in Morgellons samples. Still patients are being prescribed antipsychotics while the infection goes undetected and untreated," Holman told CBS News in an email. "Clouding the picture is that some patients do exhibit psychiatric manifestations. But spirochetal infections, such as Borrelia burgdorferi, are well known to affect the central nervous system and cause psychiatric symptoms. Yet the infection is ignored while dermatologists offer dangerous antipsychotics as the only treatment."
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.
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.