What really causes Morgellons, the disease that makes colored fibers grow out of your body?

Illustration for article titled What really causes Morgellons, the disease that makes colored fibers grow out of your body?

For over a decade, people suffering from Morgellons disease have been told that they're experiencing delusions. Even when they show doctors evidence that strange, multicolored fibers are growing out of itchy patches on their skin.

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Now we may be getting closer to an answer.

Last weekend, Guardian reporter Will Storrs published a fascinating article on the people who suffer from this controversial disease, describing his trip to a conference for people with Morgellons, and his quest to get answers from neuroscientists and doctors.

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He begins by introducing us to a few people with Morgellons, and some of the scientists who studied the disease in the mid-2000s:

In spring 2005, Randy Wymore, associate professor of pharmacology at Oklahoma State University, stumbled across an article about morgellons. Reading about the fibres sufferers believed were the byproduct of some weird parasite, but which were dismissed by dermatologists as humdrum environmental detritus, he thought, "But this should be easy to figure out." He emailed sufferers, requesting samples, then compared them with samples of cotton, nylon, carpets and curtains. Examining them under the microscope, he got a shock. The sufferers' fibres looked utterly different.

Wymore arranged for fibre analysis at the Tulsa police department's forensic laboratory. Moments into his tests, a detective with 28 years' experience of this sort of work murmured, "I don't think I've ever seen anything like this." The morgellons particles didn't match any of the 800 fibres on their database, nor the 85,000 known organic compounds. He heated one fibre to 600C and was astonished to find it didn't burn. By the day's end, Wymore concluded, "There's something real going on here. Something we don't understand at all."

The medical consensus, however, is "delusions of parasitosis" (DOP), in which people believe they're covered in bugs or other parasites. But people with Morgellons say they don't believe they're covered in bugs - they simply feel itchy, and they keep finding this spiny, colored threads poking out of their skin. Some believe they've been infected with nanofibers, and others think parasites under their skin are extruding the red and blue-tinged fibers.

Though Storrs offers evidence that some people suffering from Morgellons may also be neurotic - many at the conference he attended were riling up hotel staff by complaining of phantom bugs in their beds - he also suggests a possible cause of the malady. It may be a neurological disorder where people experience phantom itching. It isn't a mental illness, but instead a disorder of the nervous system.

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Storrs writes:

I contact Dr Anne Louise Oaklander, associate professor at Harvard Medical School and perhaps the only neurologist in the world to specialise in itch. I email her describing morgellons, pointing out it's probably some form of DOP. But when we speak, she knows all about morgellons already. "In my experience, morgellons patients are doing the best they can to make sense of symptoms that are real. They're suffering from a chronic itch disorder that's undiagnosed. They have been maltreated by the medical establishment. And you are welcome to quote me on that," she adds.

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This is a fascinating, compassionate article about a group of people whose maladies have been ignored by mainstream medicine - and who, despite everything, continue bravely to insist that they deserve medical treatment. They are clearly suffering a disorder, and it's time science came up with something better than "they're crazy."

Read the whole article via The Guardian

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DISCUSSION

ThatAsherPowell
@AsherPowell

Interesting article.

I've learned just not to knock someone's pain into the it's all in your head category. Why? Because once I slowly developed symptoms (difficulty swallowing) and I ended up going to a few specialists. It got worse (no swallowing of solids) and a barrage of tests were run and all that jazz. It was hinted that it may be all physiological and as a teen-agerish girl it probably had something to do with some kind of deep seeded issue I had with weight (huh?). As a year of tests, scans and doctors visits continued, I got worse (nothing with any viscosity, watery stuff only) and I was told there was nothing wrong with me, it's really all in your head and there is absolutely nothing anyone can do for you.

Turns out I have an extremely rare disease (achalasia) that paralyzes the muscles of your esophagus as well as a sphincter that regulates the intake of food from your esophagus to your stomach. Only 5 people in the world know how to properly diagnose and treat it (via surgery). While the majority of the medical community don't know what the fuck it is and their patients just tend to suffer and slowly starve to the point of emaciation (that was what I did for a year).

I should also point out that due to the fact I went so long with being untreated I developed a severe case aspiration pneumonia (the worst kind you can get) but didn't know about it because of the progression of my condition. So when I got my surgery done, something that was supposed to be an in and out procedure turned into a huge medical emergency that could have cost me my life. When they finished the surgery I crashed when they tried to take me off of the ventilator because my lungs weren't up to the task of actually breathing. They ended up listing me as critical, putting me on life support and taking me up to the ICU, where I ended up in a medical induced coma for 24 hrs before a near weeklong stay battling the pneumonia and suffering from a collapsed lung.

So yeah, I hate it when people say it's all in your head.