In 2001, Mary Leitao noticed something odd: a fiber poking out of an irritated patch of skin on her two-year-old son’s lip. In the weeks to come, more fibers emerged. Leitao examined them under the light of her RadioShack microscope, but she couldn’t figure out what they were. So she turned to the internet. There she found a community of people who seemed to be suffering from a similar condition. Leitao was worried. But she couldn’t convince physicians to take her seriously. So she took matters into her own hands. Leitao created a new disease and dubbed it Morgellons. She launched the Morgellons Research Foundation. Then, in 2006, she organized a media campaign.
Morgellons disease received so much attention that, in 2008, the CDC agreed to conduct an investigation into the “unexplained skin condition, commonly referred to as Morgellons.” On January 25, the journal PLoS One published the results. The researchers found no link to any infectious or environmental agent. “Most sores appeared to result from chronic scratching and picking, without an underlying cause,” the authors write. The fibers? Likely cotton from the patients’ clothing or sheets.
According to the Morgellons Research Foundation, “Morgellons disease is a poorly understood condition which a growing number of physicians believe to be a chronic infectious disease.” The long list of symptoms includes itching, biting and crawling sensations, ‘filaments’ or fibers which emerge from the skin, skin lesions, joint pain, debilitating fatigue, changes in cognition, memory loss, and mood disturbance. The researchers involved in the CDC investigation found that Morgellons bears many similarities to delusional parasitosis, a recognized psychiatric condition in which patients have unusual skin sensations that they attribute to an infectious cause.
This is not the answer the Morgellons community was hoping for. “We just want to be acknowledged. This is not a delusion,” Cindy Casey, a nurse who runs a foundation for Morgellons Research, told the San Francisco Chronicle. “We would really love to understand the etiology and be able to hope for some kind of treatment,” Casey said.
Proponents of odd-ball medical theories for which little evidence exists like to bring up examples of other medical discoveries that were once deemed crazy but are now widely accepted. They talk about Barry Marshall, who was given the cold shoulder when he first suggested that the bacteria Helicobacter pylori could cause stomach ulcers. He later won a Nobel prize. And they talk about Ignaz Semmelweis, who was ostracized from the medical community for arguing that doctors could drastically reduce the number of newborn deaths by washing their hands with a bleach solution before delivering babies. There’s even a name for the medical establishment’s tendency to reject new ideas that run counter to established beliefs. It’s called the Semmelweis reflex. (I first encountered the term in Seth Mnookin’s excellent book The Panic Virus, which contains an entire chapter on Morgellons.)
As I perused the Morgellons web sites — one of them claims the fibers are man-made nanostructures and states that “humanity is under attack” — I found myself wondering how you tell the difference between the Semmelweis reflex and an appropriate rejection of crazy talk. No one can prove the Morgellons doesn’t exist. Yet no one has produced any credible evidence that it does.
In 2008, Brigid Schulte, a Washington Post reporter, wrote a lengthy article about Morgellons for the paper’s weekend magazine. Then she hosted an online chat with readers. Dermatologist Jeffrey Meffert and physician Douglas Buckner, co-director of the Morgellons Research Foundation, joined the conversation. 
I stumbled across this exchange.
Douglas Buckner: Fibers as in Morgellons is new and has not been seen before in modern medicine or written about in the medical books. If something does not exist in the med books or the journals then it does not exist with the close minded, time pressed doctors. This is called Semmelweis Reflex, “the immediate dismissal of new scientific information without thought or examination.”
Jeffrey Meffert: Is there a reverse Semmelweiss effect where we are required to believe anything someone says until the established community disproves it? That is one of my complaints with the mrf. You have turned the scientific method on it’s head. We must believe that fiber disease is a (new? ancient? you’ve said both in different posts today) disease entity on your say so until I can prove you wrong.
Exactly, Meffert. Exactly.
Clearly Morgellons patients are ill. But the evidence suggests they are suffering from a variety of disorders already recognized by the medical community, not sickened by some mysterious infectious disease that causes fibers to grow out of their skin. That should be welcome news because it means they are one step closer to a cure.
**
Image credit: “Panic in the Streets” and “The Mayor” courtesy of Wikimedia Commons; mob scene courtesy of tedbassman on flickr.
thanks, cassandra, for that well-told morality tale.
i’m struck by the very modern tendency to invent new “diseases” to explain people’s vague chronic symptoms. before morgellons there was chronic fatigue syndrome and fibromyalgia and chronic Lyme disease. a similar movement — irate and ill laypeople who postulate a scientifically unproven cause for their illness and who accuse the “medical establishment” of ignoring them — is represented by the vaccine/autism people and by anti-vaccine people more generally. we all wanted a medically aware and active populace, but this is not what we envisioned a few decades ago when we thought that PPIs were the best thing since generic drugs.
i wonder what psychological explanation underlies this historicaly recent and scientifically untenable trend?
I wonder too, skeptico. Thanks for the thoughtful comment.