People who say they have Morgellons describe sores that will not close, a crawling or stinging feeling in the skin, and threads, specks or grains working their way out of it. Many bring samples to appointments in tape, jars or matchboxes. Most dermatologists who see them reach a diagnosis the patients reject: delusional infestation, a condition in which someone is convinced their skin is infested when no infestation can be found. Twenty years of argument have not settled what is actually happening, and the people living with it are caught in the middle.
Where the name came from
The term is modern but borrowed. In 2001 Mary Leitao, a Pennsylvania mother, took her toddler son to a series of doctors over sores on his lip and his complaints of bugs under his skin. When one physician raised the possibility of Munchausen syndrome by proxy, she named the illness herself. She found the word in a case-history essay by Sir Thomas Browne, the seventeenth-century English physician, which mentions a complaint of children in Languedoc called the morgellons, in which coarse hairs broke out on their backs. Browne’s passage has no established connection to anything described today; what it supplied was a label. Leitao set up a foundation and a website, and self-identified patients began finding each other online. By the mid-2000s newspapers were running the question as a headline, and an advocacy group, the Charles E. Holman Foundation, had started an annual conference in Austin, Texas.
The CDC study
Inquiries to the Centers for Disease Control and Prevention rose through 2006 to 2009, and after a reported cluster in Northern California the agency opened an investigation with Kaiser Permanente Northern California, a health plan covering roughly 3.2 million members in 13 counties. The results, led by Michele Pearson, were published in PLOS ONE on January 25, 2012.
The team searched medical records for people aged 13 and over who reported fibers or material emerging from the skin along with lesions or unpleasant skin sensations. They identified 115 such patients, a prevalence of about 3.65 per 100,000 members, and found no geographic clustering. Most were middle-aged, white and female. The investigators ran clinical examinations, neurocognitive testing, skin biopsies and laboratory analysis of the material patients supplied.
No infectious cause turned up. No parasites and no mycobacteria were detected, and the rates of specific parasitic infections were no higher than in the general population. The most common finding in biopsies was solar elastosis, sun damage to the connective tissue of the skin, which is unremarkable in Californians; about 40 percent of the sampled lesions looked like the result of long-term scratching or rubbing, and others resembled insect bites. Skin that looked normal was normal under the microscope. The fibers themselves were mostly cellulose, consistent with cotton, and were found embedded in crusts and scabs, pointing to clothing or to contamination during collection.
What the study did find was that these patients were genuinely unwell. Seventy percent reported chronic fatigue, 54 percent rated their health as fair or poor, cognitive deficits showed up in 59 percent, and quality-of-life scores were far below average. Half had drugs detected in hair samples. The authors would not declare the matter closed: they wrote that their data did not allow them to say whether this was a new condition or a recognized one such as delusional infestation.
The competing readings
A Mayo Clinic study published in the Archives of Dermatology in May 2011 pointed the same way. Reviewing 108 patients seen for suspected delusional infestation, the team found no evidence of infestation in any of the 80 biopsies. Among the specimens patients brought in, exactly one contained a parasite, a pubic louse the authors judged unrelated to the symptoms. Sixty-one percent of biopsies did show dermatitis and nearly half showed scratching damage, which is itself consistent with the patients’ pain.
A minority of researchers argue for an infectious cause. Marianne Middelveen, Raphael Stricker and colleagues reported in BMC Dermatology in 2015 that they had detected Borrelia spirochetes, the bacteria behind Lyme disease, in dermatological specimens from 24 of 25 patients, and cultured them from blood in seven. They described Morgellons as a genuine somatic illness and the filaments as keratin and collagen produced by the patients’ own skin cells rather than textile fibers. That work has not been replicated by independent groups, and most dermatologists and public health agencies do not accept it.
Where it stands
The symptoms are real, measurable and disabling, and the people reporting them are not inventing their suffering. What the best available evidence does not support is an infectious agent, an environmental trigger or fibers of unknown origin. The CDC has conducted the only population-based study and declined to name the condition. In a 2013 Harper’s Magazine essay, Leslie Jamison described a disease defined as much by disbelief as by any lesion, which is close to how it still functions: a set of real symptoms without an agreed cause, and patients who often feel dismissed twice over.