The symptoms of the bizarre illness known as Morgellons are enough to make your skin crawl. For patients who say they are suffering from the condition, that sensation is all too real.
Sufferers report feeling that bugs are crawling all over their skin or just under it. They have fatigue and painful sores. They also say that they’ve pulled “fibers” and other solid materials like “specks, granules, dots, worms, sand, eggs, fuzz balls and larvae” through their skin, leaving lesions, according to new research by the Centers for Disease Control and Prevention (CDC).
The new study — a $600,000 project launched in 2008 in response to a massive swell of interest and inquiries about the condition from lawmakers and patients — sought to determine how common Morgellons is. Perhaps more importantly for sufferers, the study also looked for a medical cause. The result: there is none.
No one denies that people with Morgellons are suffering from something. But the new findings suggest that their symptoms may exist only in their minds.
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CDC researchers took skin biopsies and urine and blood samples to look for infectious diseases, including bacteria or fungus, that could explain the illness. There were none. They looked for environmental causes too, and couldn’t find any.
Patients’ skin lesions were determined to be self-inflicted, from scratching and rubbing by the patient — not from external causes. And when researchers analyzed fibers from patients’ skin, they found mostly cotton and nylon, suggesting the samples had rubbed off clothing. “We were able to answer conclusively that they were not living entities,” CDC researcher and study author Mark Eberhard told USA Today.
The study was conducted among 3.2 million people in Northern California who all had health insurance through Kaiser Permanente from 2006 to 2008. Based on patient records, the researchers identified 115 patients who had reported symptoms consistent with Morgellons. Of those patients, 77% were white and female, with an average age of 52.
Overall, the study found, Morgellons occurred in about 4 out of every 100,000 people in the Kaiser network, making it a rare condition. Out of the 115 patients identified, most answered researchers’ survey questions, and about a third submitted to physical and psychological testing.
Though a medical cause could not be identified, the researchers did note some common trends among people with Morgellons: poor health. More than half of patients rated their overall health as fair or poor, and 70% reported chronic fatigue. Many had one or more co-existing medical or psychiatric conditions, including depression. About 59% had cognitive deficits, and 50% had a hair sample that tested positive for drugs. Most had “clinically significant somatic concerns” or preoccupations with their health.
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The long-awaited findings were a disappointment to many Morgellons sufferers, many of whom do not accept that their illness is a result of psychosis or, as some doctors say, a form delusional parasitosis, in which people believe they are infected with parasites.
The San Francisco Chronicle reported:
“We just want to be acknowledged. This is not a delusion,” said Cindy Casey, 49, who worked as a nurse in a Bay Area intensive care unit for 16 years before she went on disability from Morgellons. She now lives in Texas, where she runs a foundation for Morgellons research. …
Casey said she suffers from lesions all over her body and a “popping and tingling” sensation, primarily in her legs. She itches all over, so badly that it’s painful and she has trouble sleeping, she said.
The symptoms can be so maddening, she said, that she has no doubt that many Morgellons patients come across as “crazy” to doctors — and it’s not surprising that she and others are labeled as delusional, she admits.
Although the CDC report concluded that no medical explanation for Morgellons can be found, the paper “confirms what anybody who has ever seen a patient with this knows, which is that these patients are suffering greatly and their suffering is real; they shouldn’t be dismissed,” Jason Reichenberg, director of dermatology at the University of Texas Southwestern-Austin, told USA Today.
The study authors agree, suggesting that doctors use the new research to tailor “their diagnostic and treatment approaches to patients who may be affected.” Patients with such “unexplained dermopathy,” they said, may benefit from standard therapies for their co-existing medical conditions or cognitive behavioral therapy for their similar conditions like delusional infestation.
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Read the entire study, published in the journal PLoS One, here.