Morgellons Disease

Today the skeptical eye focuses on a newly described condition from the medical fringe: Morgellons disease. This is a skin condition in which a painful rash or other open sores appear on various parts of the body, but with a unique characteristic: Found embedded within these sores are colored fibers, apparently made of plastic or other synthetics. Morgellons has created something of a battle line drawn in the sand between sufferers and medical science. Sufferers believe these fibers are being extruded from the body itself, while doctors and psychiatrists generally agree that the fibers come from the environment and are merely being caught in the sores as always happens with scabs.

Skin rashes and sores are one of the physical symptoms of acute stress, and to most doctors who are aware of it, Morgellons appears to be nothing more than this. It's often compared to delusional parasitosis, where the patient believes that the normal itching of a stress-induced rash is caused by unseen parasites living in or on the skin. No parasites are ever found, but some patients tend to react with hostility toward any diagnosis that does not support their preconceived notion. But doctors can only go by the best state of our current knowledge, and are the first to admit that we don't know everything about the human body or about diseases. So to take a truly skeptical perspective, we start by setting aside what we think we know and looking at the evidence, beginning with the history.

Morgellons had a particularly inauspicious beginning. In 2001, a former hospital lab technician turned stay-at-home mom, Mary Leitao, noticed a raw patch under the lip of her two-year-old son Drew. She took him to eight (!) different doctors, dissatisfied with each diagnosis that there was nothing unusual wrong with Drew. She picked fibers from the surface of the scab and examined them under Drew's toy microscope. Her own conclusion was that the fibers were being extruded from Drew's skin, rather than coming from a blanket or stuffed animal or anything else that toddlers bury their faces in. Drawing on the word morgellons from an old French reference to black hairs, she created the name Morgellons Disease.

Leitao demanded that the doctors prescribe antibiotics, which they would not do, given the lack of any apparent illness. She became obsessed with finding a doctor who would validate this new disease she'd invented. One doctor at Johns Hopkins wrote to another "I found no evidence of [anything suspicious] in Andrew... Ms. Leitao would benefit from a psychiatric evaluation and support, whether Andrew has Morgellons Disease or not. I hope she will cease to use her son in further exploring this problem."

Another doctor at Johns Hopkins agreed, and even took it a step further, stating that Leitao appeared to be a case of Münchausen's by proxy. Münchausen's Syndrome is where you pretend to be sick because you love getting attention from doctors and hospitals. Münchausen's by proxy is a psychiatric syndrome where you take a child or other family member, and promote them as being sick, to get the same attention. It need not be a conscious deception, Mary Leitao almost certainly does genuinely believe her son is ill; but the psychiatric pathology is the same. She has since gone on to found the Morgellons Research Foundation, which currently lists 14,700 registrants.

An Internet search today reveals that Morgellons has become conflated with chemtrail conspiracy mongering. Some believe that contrails left by airplanes are actually the government spraying toxins to sicken the population with Morgellons. An article on the conspiracy theory website Rense.com compares two pictures, one claimed to show a fiber from a Morgellons sufferer, and another claiming to show a fiber from chemtrail spraying. It says:

Common characteristics of both types of fibers appear to be similar size and chaotic, uncontrolled growth. If these fibers are the result of highly advanced nanotechnology then we have found the disease, and possible who is behind it. But what would be the purpose of forcing this ailment on the population? Torture? To create a new pandemic in order to sell a new drug for a "treatment?"

Many pro-Morgellons sources claim that the fibers have defied all explanation: They are not human hair, they are not synthetic fiber, and they are not natural plant-based fibers. But I found two significant problems with these assertions. First, they seem to be nothing more than assertions, often accompanied by a story that someone looked at them under a microscope and was somehow able to rule out all known fiber compositions. Second, there is little agreement on the characteristics of the fibers, and thus no way such an assertion can be broadly applied. Some sufferers describe hard, solid plastic shards, often in bright colors. Some describe them as thick hairs. The most common photograph on the Internet shows a tangle of fine filaments. Others find curly threads consistent with synthetic fibers from brightly colored blankets, carpet, or sweaters.

So now let's look at the common medical explanation for Morgellons: Acute stress. Acute stress is known to produce all the same symptoms reported by Morgellons sufferers, including painful, itching skin rashes that the patients scratch, producing open sores that capture fibers from clothing and the environment. Stress also results in chronic fatigue, headaches, sleep loss, memory loss, and mood disorders. Do you think Morgellons might be stressful? Here's a description of what it's like to have Morgellons, from Mary Leitao's Morgellons Research Foundation:

It is difficult to understand the tremendous suffering caused by this disease. Many patients report feeling abandoned by the medical community, as they experience increasingly bizarre, disfiguring and painful symptoms, while often being unable to receive medical treatment for their condition. A large number of patients become financially devastated and without health insurance because they can no longer work. Most people who suffer from Morgellons disease report feeling frightened and hopeless.

I've gotten at least a dozen emails from Morgellons sufferers over the past couple of years, and I've also gone to YouTube and watched the reports of dozens more. There is one thing that they nearly all have in common: They almost always say something like "The doctors told me I was crazy, they told me I was imagining it, they told me it was all in my head." In my experience communicating with such people, I've come to doubt that what they were told was actually worded like this. It was probably something like "the causes of what you're going through are usually psychogenic," which the patient misinterprets and exaggerates into a straw man when they retell it. Psychiatrist Alistair Munro, author of Delusional Disorder, said "The moment you mention psychiatrists, these patients get extremely angry. They say there's nothing wrong with their brain."

You don't have to be crazy, and you don't have to imagine anything, to experience these symptoms. It's common for people who are perfectly sane and smart to make erroneous self-diagnoses. The wealth of validating, affirming information on the Internet, on sites like Mary Leitao's, exacerbate this problem. Many patients see themselves as "armed for battle" with doctors, with a battery full of information from the Internet. This frequently results in a stalemate. Patients charge that the doctors have closed their minds to the possibility that they suffer from a physical disease, and doctors find that patients have closed their minds to all but their own Internet-supported self diagnosis.

So how do we bridge this gap? Both parties have to open their minds and take steps. The doctors have already done so. In early 2008, the Centers for Disease Control launched a major investigation to learn more about Morgellons, which for now they're calling "unexplained dermopathy". The investigation is currently underway, and there's an email address and a phone number with recorded updates on the latest news. The study is being done through a medical center in Northern California that has an unusually high number of patients reporting the symptoms. For more information, visit CDC.gov/unexplaineddermopathy.

Getting the patients to take steps of their own and open their minds has proven substantially more difficult, for the reasons just discussed. Doctors face the challenge of getting patients to agree to treatment for a diagnosis to which they're often actively hostile. Despite many doctors' best efforts to communicate to their patients that they might benefit from treating the stress that accompanies their symptoms, all too often patients wrongly hear "You're crazy, you're imagining it." It's like a mine field. If I were a doctor, this would be my pitch to a Morgellons sufferer:

We don't yet know what causes these filaments and the related symptoms, but the CDC is currently investigating it. We hope to have a proven diagnosis and treatment once they finish their studies. In the meantime, we may be able to make you more comfortable by helping you deal with the stress that this is causing you. Whatever the cause turns out to be, the accompanying stress is making you suffer more than you deserve to.

Does stress treatment help? The psychiatric literature does contain published accounts of delusional parasitosis being successfully treated with psychotropic drugs and with psychotherapy, but practitioners consistently report the difficulty of getting patients to undergo such treatment. So far there don't seem to be any randomized controlled trials of treatments for Morgellons specifically, but from everything we know about delusional parasitosis and other psychogenic conditions, there's every reason to expect psychotherapy to be equally effective for Morgellons.

The Morgellons Research Foundation does recommend one treatment: the use of long-term antibiotics to treat presumed bacteria. Although bacterial infections are known not to cause strange plastic fibers to grow from your skin, and thus are logically ruled out as the cause, the belief that the antibiotic will help can leverage the placebo effect to reduce or eliminate the stress caused by belief in the disease. In any case where there is no actual disease agent, a placebo of any kind has a good chance of becoming a partial or complete cure. But there are good reasons not to take unnecessary antibiotics, so non-drug therapies would be preferred, if sufferers would be willing to attempt them.

If you really want to help someone who suffers from Morgellons or any other psychogenic condition, you can't only rely on telling them they're wrong and depending on them to take all the steps. But you also don't have to dishonestly pretend their self-diagnosis is true. There is middle ground that you can both reach, if you're both willing to find it.

By Brian Dunning
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