It all started in August 2007, on a family holiday in New England. Paul had been watching Harry Potter and the Order of the Phoenix with his wife and two sons, and he had started to itch. His legs, his arms, his torso — it was everywhere. It must be fleas in the seat, he decided.
But the 55-year-old IT executive from Birmingham, England, has been itching ever since, and the mystery of what is wrong with him has only deepened. When Paul rubbed his fingertips over the pimples that dotted his skin, he felt spines. Weird, alien things, like splinters. Then, in 2008, his wife was soothing his back with surgical spirit when the cotton swab she was using gathered a curious blue-black haze from his skin. Paul went out, bought a US$65 microscope and examined the cotton. What were those curling, colored fibers? He Googled the words: “Fibers. Itch. Sting. Skin.” And there was his answer. It must be: all the symptoms fitted. He had a new disease called morgellons. The fibers were the product of mysterious creatures that burrow and breed in the body. As he read on, he had no idea that morgellons would turn out to be the worst kind of answer imaginable.
Morgellons was named in 2001 by an American called Mary Leitao, whose son complained of sores around his mouth and the sensation of “bugs.” Examining him with a toy microscope, Leitao found him to be covered in unexplained red, blue, black and white fibers. Since then, workers at her Morgellons Research Foundation say they have been contacted by more than 12,000 affected families. Campaign group the Charles E Holman Foundation states there are sufferers in “every continent except Antarctica.” Thousands have written to the US Congress demanding action. In response, more than 40 senators, including US Secretary of State Hillary Clinton and a pre-presidential Barack Obama, pressed the US Centers for Disease Control and Prevention to investigate; in 2006, it formed a special task force, setting aside US$1 million to study the condition. Sufferers include folk singer Joni Mitchell, who has complained of “this weird incurable disease that seems like it’s from outer space ... Fibers in a variety of colors protrude out of my skin: they cannot be forensically identified as animal, vegetable or mineral. Morgellons is a slow, unpredictable killer — a terrorist disease. It will blow up one of your organs, leaving you in bed for a year.”
So it’s new, frightening and profoundly odd. But if you were to seek the view of the medical establishment, you’d find the strangest fact about this disease: morgellons doesn’t exist.
I meet Paul in a pub in a Birmingham, England, suburb. He shows me pictures he’s collected of his fibers. On his laptop, a grim parade of images flicks past. There are sores, scabs and nasal hairs, each magnified by a factor of 200. In each photo there is a tiny colored fiber on or in his skin.
“Is it an excrement?” he asks. “A byproduct? A structure they live in?” A waitress passes with a tray of salad as he points to an oozing wound. “Is it a breathing pipe?”
Paul absent-mindedly digs his nails into a lesion just below the hem of his shorts. Little red welts pepper his legs and arms, some dulled to a waxy maroon, others just plasticky-white scar tissue.
He has seen an array of experts — his family doctor, allergy doctors, infectious diseases clinicians and dermatologists. Most end up agreeing with the skin specialist to whom he first took samples of his fiber-stained cotton: his sores are self-inflicted and he suffers from delusions of parasitosis (DOP), a psychiatric condition in which people falsely believe themselves to be infested. This particular form of DOP is thought to be unique, in that it’s spread through the Internet. Whereas in the past, episodes of mass hysteria were limited to small communities — perhaps the most famous being the witch panic in Salem, Massachusetts in the 1690s — today, imagined symptoms can spread much farther on the Web.