COMMENTARY

Morgellons: Real Disease or Imaginary Malady?

Andrew Scull, PhD

Disclosures

June 18, 2015

In This Article

Morgellons: Real Disease or Imaginary Malady?

Editor’s note: This article has been updated from an earlier version and is intended as a historical perspective on Morgellons disease.

In late March, the singer Joni Mitchell was found unconscious at home and rushed to a Los Angeles hospital. In celebrity-obsessed Tinseltown, this was front-page news.

Fortunately, Mitchell recovered quite rapidly, but her hospitalization brought to mainstream attention a hitherto obscure ailment that has been dubbed "Morgellons disease." Sufferers report intense itching, a sensation that something is crawling under their skin, and lesions that will not heal, and that fibers extrude from their sores. Often, these mysterious chronic symptoms are accompanied by listlessness, chronic fatigue, and problems with memory and concentration.

Middle-aged white women seem particularly prone to the condition, and among those afflicted with it, the usual suspects are invoked to explain what is going on: an autoimmune disease; Lyme disease; environmental pollution; viral infections; or that all-purpose bogey that circulates in some circles, the side effects of vaccines.

A decade or so ago, the Charles E. Holman Morgellons Disease Foundation was established "to play an integral role in spreading the understanding of Morgellons Disease to others." The foundation, and those suffering from the syndrome, face an uphill battle.

Mainstream medicine is dismissive. In 2012, the Centers for Disease Control and Prevention (CDC), in partnership with Kaiser Permanente of Northern California, published the results of a careful study[1] of what they called "an unexplained dermopathy." The authors acknowledged that those who claimed to be suffering from Morgellons disease had "a significantly reduced health-related quality of life," but they rejected the claim that their suffering had any somatic cause, infectious or otherwise. The mysterious fibers, they found, were most likely composed of cotton that stuck to the sores created when the patients repeatedly scratched their skin.

The researchers could find no evidence of bacterial, fungal, or parasitic infection, and concluded that Morgellons was instead a psychiatric disorder, "similar to more commonly recognized conditions, such as delusional infestation" (an unshakeable yet erroneous delusion that one's skin is infested with bugs or parasites). The CDC pronounced the issue closed as far as it was concerned, archived the study for historical purposes, and declined to take matters any further.

The Morgellons community has not been amused, to put it mildly. They denounce the medical establishment in harsh terms (a representative headline is "CDC Creeps Formally Call Morgellons An Hallucination"), and many invoke conspiracy theories to explain findings they cannot accept. The idea that they suffer from a psychiatric condition, not a "real" physical illness, is anathema to them, and websites have proliferated to advance the cause.

Victims travel from doctor to doctor seeking validation that their condition is "real." A handful of physicians have accepted their claims and are embraced by the community, who rush to be treated by them and to cite their opinions—the only problem being that some proffer antifungal therapies and others antibacterial or antiparasitic pills, whereas still others urge a regimen of "natural" foods and detoxification via the wonders of colonic irrigation. Adding to the sense of confusion, these medics' theories of what precisely is organically wrong run the gamut, with their only common feature being an insistence that the disease has organic roots.

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