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.
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.
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.
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.
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.”