by Will Storr
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.’
It is astonishing. It seems to explain it all – the sudden itch, the fibres, even the lesions in unscratchable places. I discuss with Nick the sorry experiences that Paul had trying to get anyone to take him seriously. Nick admits that he was only able to have his samples examined by experts because he was acting as his own doctor. And if that hadn’t happened, he says, ‘I would have received exactly the same treatment that he did. Delusions of parasitosis.’
‘Paul had the impression that his doctors were working from a kind of checklist,’ I say, ‘and if his symptoms weren’t on it, he was just dismissed as crazy.’
‘I’m afraid that’s true,’ says Nick. ‘If none of the medical models fit, they’re dismissed. The immediate conclusion is “medically unexplained symptom”, which is a euphemism for nuts. It’s a sad indictment of my own profession but I’ve experienced it first-hand. There used to be a culture of getting to the bottom of the problem. There isn’t that now. I find that really sad. And the idea that people with Morgellons are nutty – I really did nearly go mad with the itch. It was disturbing my sleep, there was barely a minute where I wasn’t having to scratch or resist the urge to scratch. It’s this constant feeling of being infested. It freaked me out.’ As for
the weird reasons that patients come up with for their condition – the nanotechnology, the tiny wasps – Nick is unsurprised. ‘Of course, you look for answers, don’t you?’ he says. ‘We need to find explanations for things.’
We need explanations. We need certainty. And certainty is precisely what I have been seeking over the last few weeks. Are Morgellons sufferers mad? Are they sane? Are they the one? Or the other? I never considered the possibility that they might be both. And, in this, I wonder if I can detect another clue, another soft point in our faulty thinking about beliefs and who we are.
This compulsion to separate everyone into absolute types is the first lesson of Christianity that I can remember learning: kind people go to heaven, unkind people go to hell. There will come a day of judgement and that judgement will be simple, sliced, clean, merciless. In boyhood, the law of the playground dictates that you mentally divide your cohorts into people that you like and people that you don’t – in-groups and out. This doesn’t change much in adulthood. The Skeptics that I met in Manchester thrived on this kind of binary division – and the combative homeopaths did, too. They both told their story, and cast each other as villain. We are a tribal animal. It is who we are and it is how we are.
The urge is to reduce others to simplified positions. We define what they are, and then use these definitions as weapons of a war. Nobody enjoys the restless unpleasantness of doubt. It is uncomfortable, floating between poles, being pulled by invisible forces towards one or the other. We need definitions. We need decisions. We need finality if we are to heal the dissonance.
When my father told me that I had misunderstood faith – that it was not a matter of certainty, but a journey – I was instinctively hostile to the idea. Perhaps it suited me better to think that Christians are foolishly convinced by childish beliefs; that they are stupid. It is a reassuring story that I told myself because, according to the models of my brain, Christians are Bad. Journalism, too, encourages just this kind of certainty. Facts, assessed and checked. Liars exposed, truth-tellers elevated. Good guys and bad guys. The satisfaction of firm conclusions, of nuance erased, of reality tamed. In my younger years, I was driven to the ends of my own sanity by the desire for this form of truth – an unthreatening, finished article that is cauterised and stitched and does not bleed. Does she love me? Is she faithful? Will she love me next week? Next year? Did she love him more? Does she desire him more? Will we stay in love for ever?
In my mid-twenties, I attended weekly group therapy sessions in North London with people who were much older than me. One evening, a woman in her mid-forties was talking contemptuously about her father, a university lecturer who, she said, had ‘a crush’ on one of his teenage students. I was scandalised.
‘But he’s married!’ I said.
She looked baffled. What was my point?
‘I mean, doesn’t he love your mum anymore?’ I said. ‘Are they getting a divorce?’
The adults around me shared a moment. Glances were exchanged. Sniggers were muted. As I write this, I can tell you that the shame is still alive. I can feel it slithering out from underneath the memory and into my skin.
I used to hold a fierce belief in binary love, of the kind that is promised in music, film and literature. You are in love, or you are not. They were absolute modes of being, like Christian or non-Christian, right or wrong, sane or insane. Today, my marriage is happy because I understand that true love is a mess. It is like my father’s belief in God: a journey, sometimes blissful, often fraught. It is not the ultimate goal that was promised by all those pop songs. It lacks the promise of certainty. But it is its very difficulties that give love its value. If you didn’t have to fight for it – if it was just there, reliable, steady, ever-present, like a cardboard box over your head – what would be its worth?
I used to expect love to be solid, sure, overpowering, decided. That is how we declare ourselves. When we get married, we promise faithfulness forever. When priests talk about God, they say, ‘He exists.’ When the Skeptics talk about homeopathy, they say, ‘There is no evidence.’ When the medical establishment talk about Swami Ramdev’s pranayama, they say, ‘It doesn’t work’; when they judge Morgellons sufferers, they say, ‘They are delusional.’ But what if pranayama works like homeopathy works, by brilliantly triggering various powerful placebo effects? What if these Morgellons sufferers are crazy, but they have been driven to these ends by itching caused by a variety of undiagnosed conditions and rejection by lazy doctors?
As I leave the home of Dr Mann, he kindly offers to see Paul so that he can check if his is an infestation of tropical rat mites. After their meeting, a few weeks later, Nick emails me to say that he found no evidence of it, but that ‘he’s certainly not delusional’. He sends some fibre pictures and one of Paul’s videos to the experts at the Natural History Museum. They reply, ‘It is our opinion that the fibre is a fabric fibre and it is only its curvature, and consequent variation in focus, that makes it appear to be arising from under the skin. The specimen in the video does look like a mite. It is not clear enough to be certain, but the most likely candidate is a member of the suborder Astigmata, for example, a species of the family Acaridae or Glycyphagidae. These mites are typically found in stored foods, but also occur in house dust.’
Theirs is a conclusion that will be echoed when the CDC study is finally published. ‘No parasites or mycobacteria were detected,’ it reports. ‘Most materials collected from participants’ skin were composed of cellulose, likely of cotton origin. No common underlying medical condition or infectious source was identified, similar to more commonly recognised conditions such as delusional infestation.’ Commenting on the work, Steven Novella writes, ‘The evidence strongly suggests that a psychological cause of Morgellons is most likely, and there is no case to be made for any other alternative … It is entirely consistent with delusional parasitosis.’
And Paul is back where he began.
The last time I speak with him, he sighs deeply down the phone.
‘Are you all right?’ I ask.
‘Pretty crap actually. I’ve been forced out of my job. They said it’s based on my “engagement level” and that’s down to the lack of energy I’ve got at work. I can’t sign myself off sick because Morgellons is not a diagnosis. There’s no legitimate reason for me not to be operating at full speed. But, you know, I’m a fighter. I’m trying to rally against it but it’s … quite upsetting, really.’
‘How are you coping?’
‘Well … lurching along the parapet of depression, I suppose. But I’m all right. You can put another line in your book – my job is another thing that has been destroyed by this disease. And all because Morgellons isn’t supposed to exist.’
9
‘Top Dog wants his name in’
King’s Cross station, London, some time in the early eighties. A man on the end of a platform, shouting. Dirty, pale, young. Commuters backing away as two members of the British Transport Police approach him. They know what they are dealing with. Look at him. What a freak. What a lunatic. What a fucking nutter. They could never guess that, only three months ago, twenty-one-year-old Ron Coleman had been a successful investment banker working the futures market in the city and living in a beautiful flat in West Hampstead. Now here he is: broke, raging at phantoms and contemplating jumping in front of a train. Ron knows he looks crazy. But he can hear them. They’re real! All talking to him, talking about him. He can hear them. And he can hear her, among the others: Annabel, his amazing, beautiful, blue-eyed Annabel, who he misses. Oh, he misses Annabel so much. He can hear her, saying, ‘Go on, Ron. Why don’t you jump?’
The policemen took Ron to the Royal Free Hospital in Hampstead. A psychiatrist told him that he had developed a disease of the brain called schizophrenia. But it was treatable. All he had to do was stay in hospital and take the medication. In ten days, Annabel’s voice would fade.
Ten days passed and Ron did not feel better. ‘I’m getting out of here,’ he thought.
But before he could reach the door, the nurse stopped him.
‘Where are you going?’ she said.
‘Home.’
‘Well, you can’t.’
‘Of course I can! The doctor said after ten days, it would work. It’s not worked. So I’m going home.’
The nurse pressed a button. The ward went on lockdown. Ron Coleman was sectioned. It was a terrifying moment, and his first skirmish in a war of ideas that he has been fighting, now, for over thirty years. Since his sectioning, he has become an icon to an ever-growing group of voice-hearers who insist that, actually, there is nothing wrong with them. Voice-hearing, they say, is not a proof of mental illness. Like left-handedness or ginger hair, it is actually just a variation; another version of being human. Like homosexuals in the 1970s, they don’t need curing of a psychiatric illness but rather liberating from a model that says they are sick. One day, they hope, the stigma of being a voice-hearer will vanish, and the world will come to agree with Ron’s dramatic hypothesis: that there is no such thing as schizophrenia.
Most psychiatrists say that schizophrenia is a very real physical disease. They think this for several reasons – perhaps the most persuasive being that they can detect its presence in the brains of sufferers, using scans and post-mortems on deceased patients. But members of the Hearing Voices Network (HVN), of which Ron Coleman is a leader, dispute this. Along with a cadre of rebel psychiatrists, they have come to believe that people hear voices, not because of some disease in their brains, but as a result of traumatic experiences. Professor Marius Romme, the Dutch psychiatrist and the movement’s intellectual godfather, suggests that auditory hallucinations are nothing more than the brain’s attempt at offering advice following an emotional crisis. It is, he has said, ‘a normal response to an abnormal experience.’ If you go hunting for abnormal experiences that might have caused Ron’s voices, you will find two.