The Unpersuadables: Adventures with the Enemies of Science (20 page)

I had no idea what she meant.

She rolled her eyes and explained, ‘He touches the money, then he touches our food …’

Tonight, Margot describes a scene which ends up proving no less memorable: her, sat naked in a bath full of bleach, behind a locked door, wearing times-three magnification spectacles, holding a magnifying glass and a nit comb, scraping her face onto sticky office labels and examining the ‘black specks’ that were falling out. Perhaps sensing my reaction, she tries to reassure me: ‘I was just being analytical,’ she insists.

When bathing in bleach all night didn’t help, Margot brought her dermatologist samples of her sticky labels. Shaking his head, he told her, ‘I can’t tell you how many people bring me specimens of lint and black specks in matchboxes.’ She was diagnosed with DOP. Her employment was terminated. ‘I’m a midwife,’ she says, in her defence.
‘I take urine and blood samples – specimens. So I was taking them a specimen. And that’s what wrecked my life and career.’

As I am talking with Margot, I notice Randy Wymore, the molecular biologist I have been desperate to speak with, sitting at a nearby table. He is a slim, neat man wearing a charcoal shirt, orange tie and tidily squared goatee. When I sit with him, I find him to be incorrigibly bright, light and happy, even when delivering wholly discouraging news.

The first two samples that Wymore sent to the laboratory were not from Morgellons patients, but test fibres gathered from a barn and a cotton bud and then some debris from the filter in an air-conditioning unit. When the technicians correctly identified what they were, Wymore felt confident enough to submit the real things. And, so far, he says, ‘We have not yet
exactly
replicated the
exact
results of the forensics people in Tulsa.’

Indeed, the laboratory has found Wymore’s various Morgellons fibres to be: nylon; cotton; a blonde human hair; a fungal residue; a rodent hair; and down, likely from geese or ducks.

‘That’s disappointing,’ I say.

He leans his head to one side and smiles.

‘It is for the most part disappointing,’ he says. ‘But there was a bunch of cellulose that didn’t make sense on one. And another
was
unknown.’

‘Really?’

‘Well, they said it was a “big fungal fibre.” But they weren’t
completely
convinced.’

The next day, nursing practitioner Dr Ginger Savely – who claims to have treated over five hundred Morgellons patients – leads an informal discussion in the hotel conference room. Around large circular tables they sit: the oozing and the itchy, the dismissed and the angry. ‘I’ve seen a fibre go into my glasses’ says one. ‘I’ve seen one burrow into a pad’; ‘One of my doctors thinks it’s nanotechnology’; ‘Check your clothing from China for nematodes’; ‘Never put your suitcase on the floor of a train’; ‘I was attacked by a swarm of some type of tiny wasps that seemed to inject parts of their bodies under my skin.’

I am writing the words ‘tiny wasps’ into my notepad when a furious
woman with a terrifying itch-scar on her jaw says, ‘I have Erin Brockovich’s lawyer’s number in my purse. Don’t you think I’m not going to use it.’

‘But who are you going to sue?’ asks a frail elderly lady two tables away.

We all look expectantly at her. There is a moment of tense quiet.

‘I don’t know,’ she says.

In a far corner, a woman with a round plaster on a dry, dusty, pinkly scrubbed cheek weeps gently.

Ten minutes later, I am alone in the lobby, attempting to focus my thoughts. My task here is straightforward. Has Paul been failed by his medics, or is he crazy? Are these people infested with uncommon parasites or uncommon beliefs? Over at the reception desk, a conventioneer is complaining loudly, hammering her finger on the counter.

‘It’s disgusting! Bugs! In. The. Bed. I’ve already been in two rooms. I had to drive to Walmart to buy fresh linen at 5 a.m. There’s this
white
stuff all over the counter …’

When she has gone, I approach the desk and ask the receptionist if the weekend has seen a surge in complaints about cleanliness.

‘Oh yeah.’ She nods towards the conference room. ‘And they’re all coming from
those
people.’ She leans forward and whispers conspiratorially. ‘I think it’s part of their condition.’

Satisfied, I retire to the lobby to await my allotted chat with Dr Savely.

‘So, what do you think,’ I ask her, ‘about these tiny wasps?’

‘Hmmm, no,’ she says. ‘But I haven’t totally dismissed the whole genetically modified organisms thing. Something may have gone amuck.’

‘Nanotechnology?’ I ask. ‘Some defence experiment gone awry?’

‘If something like that went wrong and got out to the public …’

I decide to confess to Dr Savely my conclusion: that these people are, in fact, crazy.

‘These people are not crazy,’ she insists. ‘They’re good, solid people who have been dealt a bad lot.’

A woman approaches the vending machine behind the doctor. Between her palm and the top of her walking stick, there is a layer of tissue paper. We sit there as she creaks slowly past us.

‘There’s definitely
an element
of craziness here,’ I say.

‘But I truly believe it’s understandable,’ she says. ‘For people to say you’re delusional is very anxiety-provoking. Then they get depressed. Who wouldn’t? Hello! The next stage is usually an obsessive-compulsive thing – paying attention to the body in great detail. But, again, I feel this is understandable in the circumstances.’

Not wholly convinced, I slip back into the conference room, where Margot is using her £700 Wi-Fi iPad telescope to examine herself. Suddenly, I have an idea.

‘Can I have a go?’

Pushing the lens into my palm, I immediately see a fibre. The group falls into a hush. ‘Did you clean your hand?’ asks Margot. She fetches an anti-bacterial wet-wipe. I scrub and try again. I find an even bigger fibre. I wipe for a second time. And find another one. Margot looks up at me with wet, sorry eyes. ‘Are you worried?’ She puts a kind, comforting hand on my arm. ‘Oh, don’t be worried, Will. I’m sure you haven’t got it.’

*

Back in London,
I find a 2008 paper on Morgellons
in a journal called
Dermatologic Therapy
. It describes Morgellons patients picking ‘at their skin continuously in order to “extract” an organism’; ‘obsessive cleaning rituals, showering often’ and individuals going ‘to many physicians, such as infectious disease specialists and dermatologists’ – all behaviours that are ‘consistent with DOP’ and also consistent with Paul. (For treatment, the authors recommend prescribing a benign anti-parasitic ointment to build trust, then topping it up with an anti-psychotic.) After finding fibres on my own hand, I am satisfied that Morgellons is some twenty-first-century genre of OCD that’s spread like an Internet meme and the fibres are – just as Dr Wymore’s labs are reporting – particles of everyday, miscellaneous stuff: cotton, human hair, rat hair and so on.

I am finalising my research when I decide to check one final point that has been niggling maddeningly. The itch. Both Paul and Greg’s Morgellons began with an explosion of it. It is even affecting me: the night following my meeting with Paul, I couldn’t sleep for itching. I
had two showers before bed and another in the morning. All through the convention – even as I write these words – I am tormented; driven to senseless scratching. Why are itches so infectious?

For background, I contact Dr Anne Louise Oaklander, an associate professor at Harvard Medical School and probably the only neurologist in the world to specialise in itches. I email her describing Morgellons, carefully acknowledging that it is some form of DOP. But when we speak, Dr Oaklander tells me she knows all about Morgellons already. And then she says something that stuns me.

‘In my experience, Morgellons patients are doing the best they can to make sense of symptoms that are real. These people have been maltreated by the medical establishment. And you’re very welcome to quote me on that. They’re suffering from a chronic itch disorder that’s undiagnosed.’

To understand all this, it is first necessary to grasp some remarkable facts about itches.
In 1987 a team of German researchers found
itches weren’t simply weak forms of pain they had always been assumed to be. Rather, they concluded that itches have their own separate and dedicated network of nerves. And remarkably sensitive things they turned out to be: whereas a pain nerve has sensory jurisdiction of roughly a millimetre, an itch nerve can pick up disturbances on the skin over seventy-five millimetres away.

Dr Oaklander surmises that itches evolved as a way for humans to automatically rid themselves of dangerous insects. When a mosquito lands on our arm and it tickles, this sensation is not, as you might assume, the straightforward feeling of its legs pressing on our skin. That crawling, grubbing, tickling sensation is, in fact, a neurological alarm system that is wailing madly, begging for a scratch.

This alarm system can go wrong for a variety of reasons – shingles, sciatica, spinal-cord tumours or lesions, to name a few. It can ring suddenly, severely and without anything touching the skin. This, Oaklander believes, is what is happening to Morgellons patients.

‘That they have insects on them is a very reasonable conclusion to reach, because, to them, it feels no different to how it would if there
were
insects on them. To your brain, it’s exactly the same. So you need to look at what’s going on with their nerves. Unfortunately, what can
happen is a dermatologist fails to find an explanation and jumps to a psychiatric one.’

Of the obsessive investigations that Morgellons patients conduct on themselves, Oaklander says: ‘When you feel an itch, what do you do? You look. That’s the natural response. They may become fixated on the insect explanation for lack of a better one.’

But, she adds, that is not to say there aren’t some patients whose major problem
is
psychiatric. Others still might suffer delusions in addition to their undiagnosed neuropathic illness. Nevertheless, ‘It’s not up to some primary-care physician to conclude that a patient has a major psychiatric disorder.’

If Oaklander turns out to be correct, it makes sense that Greg Smith’s lesions healed when he stopped scratching. If the fibres
are
picked up by the environment, it explains how I found them on my hand. And if Morgellons is not actually a disease, but rather a witchbag of symptoms that might all have nerve-related maladies as its source, it squares something that Dr Savely said she is ‘constantly perplexed’ about: ‘When I find a treatment that helps one person, it doesn’t help the next at all. Every patient is a whole new ballgame.’

Thrilled at this development, I phone Paul and explain the itch-nerve theory. But he doesn’t seem very excited.

‘I can’t see how that relates to my condition,’ he sighs. ‘I’ve got marks on my back that I can’t even reach. I’ve not created those by scratching.’

It is a good point, perhaps, but one that I quietly dismiss. It now seems so likely that Paul is either delusional, or has some undiagnosed itch disorder, that I judge that he is merely looking for reasons not to believe this elegant and compelling solution.

Then, weeks later, I receive an unexpected email from a stranger in east London. Nick Mann has heard about my research into Morgellons and he wonders if I might be curious to hear about his experiences. When I arrive at his house, on a warm Tuesday night, and settle in his small kitchen with a mug of tea, I am doubting the wisdom of my visit. Probably, I think, I am wasting my time.

But Nick doesn’t appear to be the kind of conspiracy-fixated, talking-too-fast, fiddling-with-their-fingers individual who usually gets in
touch. Rather, he is a calm and friendly father of two who, he tells me, went for a walk a couple of years ago in the grounds of Abney Park Cemetery, just down the road from his home, when something unsavoury took place. It had been a sunny day and he had been wearing shorts and sandals. That evening, his legs began itching. Marks sprang up on his body. ‘I was convinced something was on me,’ he tells me. ‘Something digging into my skin. Burrowing.’

Over the coming days, lesions began to open up on his skin. Running his fingertips over them, he could feel something inside: spines or fibres. He stripped naked in his kitchen and tried to dig one out. ‘I stood there for three or four hours, waiting for one to bite,’ he says. ‘As soon as it did, I went for it with a hypodermic needle. There was one on my nipple.’ He pales slightly. ‘You know, I can’t get that out of my head. It was so painful. I dug the needle in and felt it flicking against something that wasn’t me. And I just carried on digging and scooping.’ He carried on like this for nearly four hours. ‘At one point my wife came in and saw blood dripping down from my leg and scrotum.’

By the end of the day, Nick had dug three of the ‘things’ from his body. They were so small, he says, ‘You could only see them when they moved.’ Tipping them from a Rizla paper into a specimen jar, he showed his wife, Karen. She peered into the pot. She looked worriedly at her husband. Karen could see nothing.

I put my pen down and rub my brow. Poor Nick Mann, I think. Just like Greg Smith, madly attacking his own body, trying to remove bits of fluff. And just like Paul – so convinced by the illusion of his own itch response that he became fixated on the fantasy that he had been invaded by invisible monsters. To get some general sense of how unstable this man could turn out to be, I try to discover a bit more about him.

‘What did you say you did for a living?’ I ask.

‘I’m a GP,’ he says.

I sit up. ‘You’re a GP?’

‘Yes,’ he says, brightly. ‘I’m a doctor. A GP. At a practice in Hackney.’

‘Right,’ I say. ‘Okay. Right. So then what happened?’

‘I took the three mites I’d caught to the Homerton Hospital in East
London,’ he says. ‘A technician there mounted one on a slide, put it under a microscope and said “Beautiful.” Everyone gathered around saying, “Ooh, look at that.” They had no idea what it was. They sent it over to the Natural History Museum, who identified it within a day. It was a tropical rat mite. What they do is go in through the hair follicles and find a blood vessel at the bottom. That’s where they sit and that’s what the fibres are – their legs folded back.’