About a year and a half ago, I learned most of what I know about Morgellons Disease while spending a week researching a Skeptoid episode on the subject. It’s a bizarre condition in which sufferers believe that their skin is extruding strange fibers; sometimes colored, sometimes synthetic, always strange. Doctors and psychiatrists have compared it to delusional parasitosis, where imagined parasites are crawling in and on the skin.
Morgellons was invented (it would not be accurate to say diagnosed) in 2001, by a mom whose toddler son developed an unremarkable raw patch on his chin. When the scab collected fibers — almost certainly from the environment — she believed that they were being extruded from his skin. She took him to doctor after doctor, looking for one who would confirm her belief, but none would. A consensus rose among the doctors that she suffered from Munchausen by Proxy, in which an individual thrives on attention from doctors through presenting a family member as an extraordinary medical case. Reports are that she tried eight different doctors, and when none agreed with her claim, she coined the term Morgellons disease. An active community of Morgellons sufferers has grown worldwide ever since.
The general feeling among the medical profession (and with which I agree, based on my research) is that most of the patients who have self-diagnosed with Morgellons are suffering from acute stress or other psychiatric conditions. Among the many possible physical manifestations of acute stress is skin sores. The sufferer scratches, causing scabs. Environmental fibers become caught in the scab. Combined with other highly uncomfortable symptoms, and a bit of Internet research, the fibers convince the sufferer that Morgellons is the cause. It is noteworthy that prior to Morgellons’ appearance on the Internet in 2001, there were no reports of a strange disease in which the body extrudes colorful plastic fibers.
In accordance with public pressure to investigate Morgellons, the Centers for Disease Control and Prevention initiated a large-scale investigation of the reports, to determine whether a new medical condition had indeed been discovered. As noted in my Skeptoid episode, the CDC’s latest news was reported on a special web page, http://www.cdc.gov/unexplaineddermopathy/. Sufferers were able to keep up on the latest research.
And now, on January 25, 2012, the CDC has released its results. In short, they found no physiological cause, and that nearly all sufferers also reported other conditions considered to be psychogenic. An accurate summary of their findings is that the patients who believe their body is extruding fibers are wrong, the fibers come from elsewhere (cotton was the most common composition detected), and the condition is delusional (my words, not the CDC’s). The study, reported in PLoS ONE, concluded:
To our knowledge, this represents the most comprehensive, and the first population-based, study of persons who have symptoms consistent with the unexplained dermopathy referred to as Morgellons. We were not able to conclude based on this study whether this unexplained dermopathy represents a new condition, as has been proposed by those who use the term Morgellons, or wider recognition of an existing condition such as delusional infestation, with which it shares a number of clinical and epidemiologic features. We found little on biopsy that was treatable, suggesting that the diagnostic yield of skin biopsy, without other supporting clinical evidence, may be low. However, we did find among our study population co-existing conditions for which there are currently available therapies (drug use, somatization). These data should assist clinicians in tailoring their diagnostic and treatment approaches to patients who may be affected. In the absence of an established cause or treatment, patients with this unexplained dermopathy may benefit from receipt of standard therapies for co-existing medical conditions and/or those recommended for similar conditions such delusions infestation.
How will this news be received by the Morgellons community? Predictably, the findings will be rejected, in favor of their desired theory that an actual disease agent is present. There will most likely be claims of a Big Pharma conspiracy, or charges that doctors are afraid of discovering new conditions that “rock the boat” or conflict with “mainstream dogma”.
But the true problem is that many such patients will continue to go untreated, due to their hostility toward a psychiatric diagnosis which (in my experience) they misinterpret as “calling them crazy”. After all — they reason — the fibers are there, real, and physical; how could it just be psychological? Acute stress and other psychiatric conditions can be highly disabling and can cause physiological symptoms. No one is “calling them crazy”; it’s simply a different diagnosis than the one they prefer.
Even assuming the CDC’s findings are correct, they will likely have very little impact helping the sufferers. And that’s the real tragedy of Morgellons.