Every couple of months, it seems, comes a new media story on Morgellons disease, a “mysterious ailment” in which
Most individuals with this disease report disturbing crawling, stinging, and biting sensations, as well as non-healing skin lesions, which are associated with highly unusual structures. These structures can be described as fiber-like or filamentous, and are the most striking feature of this disease. In addition, patients report the presence of seed-like granules and black speck-like material associated with their skin.
Sounds like something that’s right up my alley of interest, but I’ve not written anything on it yet. This isn’t because I’m not interested, but simply because there’s hardly anything in the biomedical literature about the disease–if it’s even a disease at all. Nevertheless, the Chicago Tribune has a new story on the topic, detailing some of the difficulties that come with deciding if it’s a real ailment at all, and if so, how to study it.
Thousands of victims concentrated in Texas, California and Florida claim to be afflicted by the debilitating malady, for which there is no known cause and no certain cure. One young Austin man apparently committed suicide when the agony grew too acute, while many others, spurned by disbelieving doctors, are suffering in silence.
But whether the symptoms constitute a frightening new disease suddenly surfacing across the nation, or a case of mass hysteria abetted by Internet message boards and breathless local TV news reports, is a question that experts at the federal Centers for Disease Control and Prevention in Atlanta are urgently trying to answer.
“We don’t know yet what it is, so our first aim is to try to characterize it scientifically,” said Dan Rutz, a CDC spokesman. “There’s a concern that there’s an infectious process going on. It would be very disturbing from a public health standpoint if that turns out to be case. We don’t have any evidence to support that, but we are approaching this with an open mind.”
Those who claim to suffer from Morgellons–or know those that do–have been highly critical of the biomedical community’s response to reports of the illness. Some think it’s completely made up; others think something biological is indeed going on, but they have no idea what.
Morgellons victims have no doubt that the joint pain, fatigue and self-described “brain fog” they are suffering is real. From the crusty lesions that break out all over their bodies, they say they routinely yank blue, red, black and translucent filaments, some of them as long as an eyelash and others visible only under a microscope. Sometimes, instead of fibers, they extract small black granules resembling tiny peppercorns.
“When the lesions and fibers appear, it feels like there’s something stinging you from inside your skin,” said Stephanie Bailey, 35, an Austin resident who’s on medical leave from her job with the state environmental agency. “It sounds so unbelievable that people just think you are nuts. But this is not something I am making up.”
Yet that is precisely what skeptics insist the Morgellons sufferers are doing.
Some experts in dermatology and psychiatry say the hallmark traits of Morgellons–the crawling sensations, the mystery fibers and the penchant of sufferers to obsessively collect samples of the granules and fuzz to show their doctors–closely resemble a well-known psychiatric condition known as delusions of parasitosis, the belief that tiny bugs are burrowing beneath the skin.
The lesions are self-inflicted, caused by incessant scratching at the imagined parasites, the skeptics insist. The fibers are nothing more than lint from clothing, tissues or bandages. And the hypochondria is being spread thanks to sensational “sweeps week” TV news reports and Web sites, which reinforce the beliefs of psychologically vulnerable people that they have contracted a new disease.
The attention the disease has received via sensational reporting also makes it more difficult to know if it’s real, or if, as suggested, it’s just a psychiatric condition. One skeptic runs a website called Morgellons watch, where he has one post describing fibers in a tissue sample. However, he notes the samples came from his own healing pimple, and the fibers are simply clothing fibers. Is this the case with many Morgellons sufferers? A
MD PhD who runs serves as the research director of the Morgellons foundation says it’s not, and that the fibers he’s uncovered in patients “aren’t just environmental contaminants.” How he tested that, though, isn’t mentioned in the article.
In all, I think it’s a fascinating area, whether it’s actually due to some kind of novel agent, a psychiatric ailment that’s been fueled by media interest and reporting, or something else altogether that hasn’t been suggested yet. Either way, let me make a prediction. If it’s concluded that it’s not really something novel, you can be sure that there will be allegations of scientists being too “closed-minded” to recognize it as a disease. If it’s concluded that it’s actually a new disease, potentially caused by an infectious agent, there will be allegations that scientists are “fear-mongering” or just making up a new disease to sell drugs.