The Unpersuadables: Adventures with the Enemies of Science (19 page)

Since Leitao began drawing attention to the problem,
thousands of sufferers in the US have written to members of Congress
, demanding action. In response, more than forty senators, including Hillary Clinton, John McCain and a pre-presidential Barack Obama, pressured the government agency the Centers for Disease Control (CDC) to investigate.
In 2008, the CDC established a special task force
in collaboration with the US Armed Forces Institute of Pathology, with an initial budget of one million dollars. At a 2008 press conference, held to update the media on the agreed protocol for a scientific study, principal investigator Dr Michele Pearson admitted, ‘We don’t know what it is.’

So, it is new and it is frightening and it is profoundly peculiar. But if you were to seek the view of the medical establishment, you would find the strangest fact of all about the disease.

Morgellons doesn’t exist.

*

I have met Paul in a Tudor-fronted coaching inn, in a comfy executive suburb west of Birmingham. He arrived in a black Audi with leather seats, his suit jacket hanging on a hook over a rear window. There is chill-out music, a wood-fired pizza oven and, in the sunny garden, a flock of cyclists supping soft drinks from ice-clinking glasses. Paul is showing me pictures that he has collected of his fibres. A grim parade of JPEGs flicks past on his screen – sores and scabs and nasal hairs, all magnified by a factor of two hundred. In each photo, a tiny coloured fibre on or in his skin.

‘Is it an excrement?’ he asks. ‘A by-product? A structure they live in?’ A waitress passes with a bowl of salad as he gestures towards an oozing wound. ‘Is it a breathing pipe?’ He shakes his head. ‘It’s just like something from science fiction. It’s something that you’d see in a movie or in a book on aliens from another planet. It’s out of this world.’

I nod and scratch my neck while Paul absentmindedly digs his nails into a lesion just below the hem of his khaki shorts. They visibly pepper his legs and arms – little red welts, some dulled to a waxy maroon, older ones now just plasticky-white scar tissue.

Paul has seen an array of experts – allergy doctors, tropical- and infectious-disease specialists, dermatologists. He has visited his GP more times than he can remember. None of them have given him an answer that satisfies him, or offered an end to the itching. His most recent attempt was at a local teaching hospital. ‘I thought,
Teaching hospital! They might want to do a study on me
. Last week, I took them
some samples of the fibres on a piece of cotton wool. But they discharged me. They said there was nothing they could do.’

Everywhere Paul goes, he carries a pot of alcohol hand-gel, which he has spiked with a traditional Middle Eastern parasite-killer called neem oil. In between his four daily showers, he steam cleans his clothes. The stress of it all leaves him exhausted, short-tempered. He has difficulty concentrating and applying himself at work. ‘It affects my performance a bit,’ he says.

‘What does your wife think?’ I ask.

His voice cracks.

‘Frustrated,’ he says. ‘Sick of me being depressed and irritated. She wants her normal life back. And sometimes, without any progress coming along, I get depressed. Very depressed.’

‘When was your lowest moment?’

He breaks eye contact. ‘I don’t want to go into that.’ He stares into his half of ale, scratches his wrist and says, eventually, ‘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 forever with this.’

‘Have you mentioned these thoughts to your doctor?’

‘No, because talking about suic—’ He stops himself. ‘Things like that …’ Another pause. ‘Well, it adds a mental angle.’

Paul is referring to the pathology that clinicians and Skeptics alike claim is actually at the root of Morgellons. They say that what people like him are really suffering from is a form of psychosis called delusions of parasitosis, or DOP. He is, in other words, crazy. It is a view typified by
academics such as Jeffrey Meffert
, an associate professor of dermatology at the University of Texas in San Antonio, who has created a special presentation devoted to debunking Morgellons that he regularly presents to doctors and who told the
Washington Post
, ‘Any fibres that I have ever been presented with by one of my patients have always been textile fibres.’ It is thought that it is spread, not by otherworldy creatures but by the Internet. As
Dr Mary Seeman, Emeritus Professor of Psychiatry
at the University of Toronto, explained to the
New York Times
, ‘When a person has something bothering him these days, the first thing he does is go online.’
Dr Steven Novella of
The Skeptics Guide to the Universe
agrees: ‘It is a combination of a cultural phenomenon spreading mostly online, giving specific manifestation to an underlying psychological condition. I am willing to be convinced that there is a biological process going on, but so far no compelling evidence to support this hypothesis has been put forward.’

But Paul is convinced. ‘It is
absolutely
a physical condition,’ he insists. ‘I mean, look!’

Indeed, the evidence of his JPEGs does seem undeniable. Much thinner than his body hair, the fibres bask expansively in craterous sores, hide deep in trench-like wrinkles and peer tentatively from follicles. They are indisputably there. Morgellons seems to represent a mystery even deeper than that of homeopathy. Its adherents offer physical evidence. Just for once, I wonder, perhaps the Skeptics might turn out to be wrong.

In an attempt to find out, I am travelling to the Fourth Annual Morgellons Conference in Austin, Texas, to meet a molecular biologist who doesn’t believe the medical consensus. Rather, the forensic tests he has commissioned on the fibres point to something altogether more alien.

*

In the spring of 2005, Randy Wymore
, an associate professor of pharmacology at Oklahoma State University, accidentally stumbled across a report about Morgellons. Reading about the fibres that patients believed were the by-product of some weird parasite, but which were typically dismissed by disbelieving dermatologists as textile fragments, he thought, ‘But this should be easy to figure out.’ He emailed sufferers, requesting samples, then compared them to bits of cotton and nylon and carpets and curtains that he had found about the place. When he peered down the microscope’s dark tunnel for the first time, he got a shock. The Morgellons fibres looked utterly different.

Wymore arranged for specialist fibre analysts at the Tulsa Police Department’s forensic laboratory to have a look. Twenty seconds into their tests, Wymore heard a detective with twenty-eight years’ experience of doing exactly this sort of work murmur, ‘I don’t think I’ve ever seen anything like this.’ As the day wound on, they discovered that the
Morgellons samples didn’t match any of the eight hundred fibres they had on their database, nor the eighty-five thousand known organic compounds. He heated one fibre to 600°C and was astonished to find that it didn’t burn. By the day’s end, Wymore had concluded, ‘There’s something real going on here. Something that we don’t understand at all.’

In downtime from teaching, Wymore still works on the mystery. In 2011, he approached a number of commercial laboratories and attempted to hire them to tease apart the elements which make the fibres up. But
the moment they discovered the job was related to Morgellons
, firm after firm backed out. Finally, Wymore found a laboratory that was prepared to take the work. Their initial analyses are now in, but the conclusions unannounced. More than anything else, it is this that I am hoping to hear about over the coming days.

It all begins an hour south of Austin, Texas, in the lobby of the Westoak Woods Church convention centre. Morgellons sufferers are gathering around the Continental breakfast buffet. From the UK, Spain, Germany, Mexico and twenty-two US states, they dig greedily into the sticky array – Krispie Treats, Strawberry Cheese-flavour Danish pastries, and Mrs Spunkmeyer blueberry muffins – as loose threads of conversation rise from the hubbub: ‘I mix Vaseline with sulphur and cover my entire body to suffocate them’; ‘The more you try to prove you’re not crazy, the more crazy they think you are’; ‘The whole medical community is part of this. I wouldn’t say it’s a conspiracy but …’ At a nearby trestle table, a man sells pots of ‘Mor Gone gel’ (‘Until There Is A Cure … There Is Mor Gone’).

Many of the attendees that are moving slowly towards the conference hall will have been diagnosed with DOP, a subject that possesses a day-one speaker, paediatrician Greg Smith, with a fury that bounces him about the stage, all eyes and spit and jabbing fingers.

‘Excuse me, people!’ he says. ‘This is morally and ethically wrong! So let me make a political statement, boys and girls.’

He dramatically pulls off his jumper, to reveal a T-shirt: ‘DOP’ with a red line through it.

‘No more!’ he shouts above the whoops and applause. ‘No more!’

Out in the car park, Smith tells me that he has been a sufferer
since 2004. ‘I put a sweatshirt I’d been wearing in the garden over my arm and there was this intense burning, sticking sensation. I thought it was cactus spines. I began picking to get them out, but it wasn’t long before it was all over my body.’ He describes ‘almost an obsession. You just can’t stop picking. You feel the sensation of something that’s trying to come out of your skin. You’ve just got to get in there. And there’s this sense of incredible release when you get something out of it.’

‘What are they?’ I ask.

‘Little particles and things,’ he says, his eyes shining. ‘You feel the sensation of something that’s trying to come out of your skin.’ He is pacing back and forth now. He is becoming breathless. ‘You
feel
that. And when you try to start picking, sometimes it’s a little fibre, sometimes it’s a little hard lump, sometimes little black specks or pearl-like objects that are round and maybe half a millimetre across. When it comes out, you feel instant relief. It’s something in all my experience that I had never heard of. It made no sense. But I saw it over and over again.’

Sometimes, these fibres can behave in ways that Smith describes as ‘bizarre’. He tells me of one occasion in which he felt a sharp pain in his eye. ‘I took off my glasses and looked in the mirror,’ he says. ‘And there was a fibre there. It was white and really, really tiny. I was trying to get it out with my finger, and all of a sudden it moved across the surface of my eye and tried to dig in. I got tweezers and started to pick the thing out of eyeball. I was in terrible pain.’

I am horrified.

‘Did it bleed?’

‘I’ve still got the scar,’ he nods. ‘When I went to the emergency room and told the story of what had been going on – they called a
psychiatrist
in! I was like, “Wait a minute, what the heck is going on here?” Fortunately, he didn’t commit me and after another consultation with him he became convinced I was not crazy.’

‘So, it was a Morgellons fibre?’ I say. ‘And it
moved
?’

‘Of course it was a fibre!’ he says. ‘It honest-to-God moved.’

Smith tells me that a Morgellons patient who finds unusual fibres in their skin will typically bring a sample to show their doctor. But
when they do this, they’re unknowingly falling into a terrible trap. It is a behaviour that is known among medical professionals as ‘the matchbox sign’ and it is used as evidence against them, to prove that they are mentally ill.

‘The matchbox sign was first described in about 1930,’ he says. ‘They say it’s an indicator that you have DOP. This is something that infuriates me. It has absolutely zero relevance to anything.’

Back in the UK, of course, Paul received his diagnosis of DOP after taking fibre-smeared cotton to his dermatologist. I tell Greg Smith that, were I to find unexplained particles in my skin, I would probably do exactly the same.

‘Of course!’ he says. ‘It’s what anyone would do if they had any sense at all. But the dermatologist will stand ten feet away and diagnose you as delusional.’

‘But surely they can see the fibres?’

‘They can if they look. But they will not look!’

‘And if you try to show them the fibres, that makes you delusional?’

‘You’re crazy! You brought this in for them to look at? First step – bang.’

‘But this is madness!’ I say.

‘It’s total madness! It’s inexcusable. Unconscionable.’

We speak about the CDC study. Like almost everyone here, Smith is suspicious of it. There is a widespread acceptance at this conference that the American authorities have already decided that Morgellons is psychological and – in classic hominin style – are merely looking for evidence to reinforce their hunch. Both Smith and Randy Wymore, the molecular biologist who arranged the forensic examination in Tulsa, have repeatedly offered to assist in finding patients, and have been ignored.

‘Have you heard of the phrase “Garbage In Garbage Out”?’ he says. ‘It doesn’t matter what conclusion that study comes to, even if it is totally favourable to the Morgellons community. It’s not well designed. It’s trash.’

As he speaks I notice Smith’s exposed skin shows a waxy galaxy of scars. Although he still itches, all of his lesions appear to have healed. It is a remarkable thing. Skeptics believe that Morgellons sores are not
made by burrowing parasites but by obsessive scratchers eroding the skin away. If Smith is correct, though, and the creatures are responsible for the sores, how has he managed to stop those creatures creating them?

‘I absolutely positively stopped picking,’ he tells me.

‘And that was
it
?’

‘Sure,’ he replies, shrugging somewhat bemusedly, as if what he has just said doesn’t run counter to everything that he is supposed to believe.

*

That evening, the Morgellons sufferers are enjoying a celebratory enchilada buffet at a suburban Mexican restaurant. Over the lukewarm feast, I have a long conversation with a British conventioneer – a midwife from Ramsgate named Margot. Earlier in the day, when I first met Margot, she said something that has been loitering in my mind ever since, wanting my attention but not quite sure why or what it is doing there. We were at a cafe, waiting for the man to pass us our change and our lunch. He dropped the coins into our hands and turned to wrap our sandwiches. As he did so, Margot sighed theatrically and gave me a look as if to say, ‘Unbelievable! Did you see that?!’