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 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 £40 microscope and examined the cotton. What were those curling, coloured fibres? He Googled the words: "Fibres. Itch. Sting. Skin." And there was his answer. It must be: all the symptoms fitted. He had a new disease called morgellons. The fibres 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 fibres. 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 Congress demanding action. In response, more than 40 senators, including Hillary Clinton, John McCain and a pre-presidential Barack Obama, pressured the Centres For Disease Control And Prevention (CDC) to investigate; in 2006, it formed a special taskforce, setting aside $1m 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... Fibres in a variety of colours 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 suburb. He shows me pictures he's collected of his fibres. 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 coloured fibre 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 – GPs, allergy doctors, infectious diseases clinicians and dermatologists. Most end up agreeing with the skin specialist to whom he first took samples of his fibre-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.
Paul is not convinced by this diagnosis. He carries an alcohol hand gel everywhere he goes, has four showers a day and steam-cleans his clothes. The stress leaves him exhausted, short-tempered. He has difficulty concentrating or applying himself at work. His lowest points have been "pretty much feeling like ending it. Thinking, could I go through with it? Probably. It's associated with the times the medical profession have dismissed me. It's just… I can't see myself living for ever with this."
Has he mentioned these thoughts to his doctor?
"No, because talking about things like that adds a mental angle – supports the prognosis of DOP. And it's absolutely a physical condition. I mean, look!"
The evidence on his computer does appear convincing. Much thinner than his body hair, the fibres seem to be protruding from his sores. But what are they? And how did they get there? To find out, I'm heading to the 4th Annual Morgellons Conference in Austin, Texas, to meet a molecular biologist who doesn't believe the medical consensus. Rather, he argues, the forensic tests he's commissioned on the fibres point to something altogether more unworldly.
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."
Last year, he approached several commercial laboratories to run further tests, but the moment they discovered the job was related to morgellons, firm after firm backed out. Finally, Wymore found a lab prepared to take the work. It is these results that will be revealed during the course of the two-day conference.
https://www.theguardian.com/lifeandstyle/2011/may/07/morgellons-mysterious-illness
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 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 £40 microscope and examined the cotton. What were those curling, coloured fibres? He Googled the words: "Fibres. Itch. Sting. Skin." And there was his answer. It must be: all the symptoms fitted. He had a new disease called morgellons. The fibres 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 fibres. 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 Congress demanding action. In response, more than 40 senators, including Hillary Clinton, John McCain and a pre-presidential Barack Obama, pressured the Centres For Disease Control And Prevention (CDC) to investigate; in 2006, it formed a special taskforce, setting aside $1m 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... Fibres in a variety of colours 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 suburb. He shows me pictures he's collected of his fibres. 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 coloured fibre 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 – GPs, allergy doctors, infectious diseases clinicians and dermatologists. Most end up agreeing with the skin specialist to whom he first took samples of his fibre-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.
Paul is not convinced by this diagnosis. He carries an alcohol hand gel everywhere he goes, has four showers a day and steam-cleans his clothes. The stress leaves him exhausted, short-tempered. He has difficulty concentrating or applying himself at work. His lowest points have been "pretty much feeling like ending it. Thinking, could I go through with it? Probably. It's associated with the times the medical profession have dismissed me. It's just… I can't see myself living for ever with this."
Has he mentioned these thoughts to his doctor?
"No, because talking about things like that adds a mental angle – supports the prognosis of DOP. And it's absolutely a physical condition. I mean, look!"
The evidence on his computer does appear convincing. Much thinner than his body hair, the fibres seem to be protruding from his sores. But what are they? And how did they get there? To find out, I'm heading to the 4th Annual Morgellons Conference in Austin, Texas, to meet a molecular biologist who doesn't believe the medical consensus. Rather, he argues, the forensic tests he's commissioned on the fibres point to something altogether more unworldly.
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."
Last year, he approached several commercial laboratories to run further tests, but the moment they discovered the job was related to morgellons, firm after firm backed out. Finally, Wymore found a lab prepared to take the work. It is these results that will be revealed during the course of the two-day conference.
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