The Morgellons Mystery
Warning: what follows will make your skin crawl—literally. It is a disturbing condition that causes victims to develop open sores that won’t heal, sprout strange, brightly colored fibers, and feel sensations of something moving, stinging and biting under the skin. Sufferers have experienced fatigue, memory loss, impaired vision and joint pain.
But perhaps most troubling is the fact that the medical profession hasn’t even been able to agree whether it’s a real disease or its alleged sufferers are just delusional.
While doctors and scientists are hesitant to call it a legitimate new illness, reports of the phenomenon, known as Morgellons, are spreading. The Morgellons Research Foundation, or MRF, reports that 12,596 families have registered with them so far, mostly from Texas, Florida, and California. Reports have now begun to come in from Canada and Europe as well. Mary Leitao, whose son developed the condition after complaining of “bugs,” formed the group to help the affliction gain legitimacy in the medical community.
The strange blue, green, red and black fibers, also described as wires or threads, are the most striking characteristics tying together alleged cases of Morgellons. Leitao coined the disease’s name herself after finding accounts of a disease by that name involving “harsh hairs” in the 17th-century medical researcher Sir Thomas Browne’s “Letter To A Friend.”
The CDC is conducting an investigation into the phenomenon, at present labeled an Unexplained Dermopathy, together with Kaiser Permanente’s Northern California Division of Research and the U.S. Armed Forces Institute of Pathology.
The study, being conducted in three stages, began in January. Participants will undergo clinical evaluations, including general, dermatological, and mental health exams, skin biopsies, multiple blood tests and urine samples.
“We have no data on it at this point,” said CDC spokeswoman Lola Russell. “This is an initial investigation. This is population-based research, a descriptive study, to help us learn more about people who may have been affected by this condition. We have now begun the process of quantifying it and qualitatively looking at it.”
Russell said she could not comment on any new developments or clues as to what the strange fibers or crawling sensations could be.
“We’re not commenting on any of that, because we don’t know any of that,” she said. That’s why we’re doing research and tests. We’re not even at that point yet.”
No information is available yet as to whether or not the condition is parasitic, what treatment options may be, or how people can protect themselves. Russell said that the CDC hopes to have data to share with the public by next January.
“That’s still open,” she said. “This is something that we’re looking into and we hope to find more information about it. It’s unknown at this point. It hasn’t been specifically linked to any infectious agent. These are questions that for the moment, we don’t know
the answer to. It’s very new.”
It should come as no surprise that such an unacknowledged medical mystery has spun several conspiracy theories. Some Morgellons speculators have been calling the disease a government “inside job.” They hypothesize that the condition might have originated in “chemtrails,” allegedly jet contrails used to test out new agents of biological warfare.
Russell said the CDC could not respond to such allegations.
“The CDC does not have a position on this. We don’t know anything about the condition, we’re looking to find out more about it,” she said. “We’re trying to even describe it, to even give details on it…if there is a condition that fits this description, if there is a protocol for it.”
The National Institutes of Health has launched a new Undiagnosed Diseases Program to deal with mysterious conditions like Morgellons.
“Morgellons may come up in this particular study, but it will not be exclusively about that,” said Kelli Marciel of the NIH’s Office of Rare Diseases.
Russell said that if there are suspicious factors or patterns in the illness, there will be follow-up studies.
The difficult part of trying to scientifically pin down Morgellons is that most of what is known about it comes from self reports by those affected. There is no official protocol for it or any type of systematic surveillance. The majority of information on it so far has been collected by the Morgellons Research Foundation’s registry. The CDC received roughly 1,200 inquiries about it in 2007, according to the transcript of a January media briefing.
The very lack of information about Morgellons is what makes it all the more unsettling for the general public.
“We’re working with science here, not opinion,” said Russell. “So our scientists are working very hard at something that has been of concern to a number of people and we’re dedicated to finding out as much as we can about it.”
The Morgellons Research Foundation and Dr. Joe Selby, Director of the Division of Research at Kaiser Permanente, could not be reached as of press time.
-Stephanie Wynalek is pursuing a bachelor’s degree in journalism and media studies at Rutgers University.