I contact Anne Louise Oaklander, associate professor at Harvard Medical School and perhaps the only neurologist in the world to specialize in itch. I send her an e-mail describing morgellons, pointing out it’s probably some form of DOP. But when we speak, she knows all about morgellons already. “In my experience, morgellons patients are doing the best they can to make sense of symptoms that are real. They’re suffering from a chronic itch disorder that’s undiagnosed. They have been maltreated by the medical establishment. And you are welcome to quote me on that,” she adds.
In 1987, German researchers found itch wasn’t simply the weak form of pain it had always been assumed to be. Rather, they concluded itch has its own separate and dedicated network of nerves. And while a pain nerve has a sensory jurisdiction of roughly a millimeter, an itch nerve can pick up disturbances on the skin over 7.5cm away.
Oaklander surmises that itch evolved as a way for humans instinctively to rid themselves of dangerous insects. When a mosquito lands on your arm and it tickles, this sensation is not the straightforward feeling of its legs pushing on your skin. It is, in fact, a neurological alarm system; one that can go wrong for a variety of reasons — shingles, sciatica, spinal cord tumors or lesions, to name a few. In some cases, it can be triggered, suddenly and severely, 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 because, to them, it feels no different from 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.”
That’s not to say there aren’t some patients whose problem is psychiatric, she adds. Others still might suffer delusions in addition to their undiagnosed neuropathic illness. Even so, “It’s not up to some primary care physician to conclude that a patient has a major psychiatric disorder.”
The CDC is due to publish a long-delayed study on the condition and, if it proves Oaklander’s theory correct, this would explain a great deal. Why, for example, Greg Smith’s lesions stopped developing when he stopped scratching: because they were self-inflicted. Why I found fibers on my hand: because they are picked up from the environment. What’s more, if morgellons is not actually a disease but a combination of symptoms that might have all sorts of different maladies as its source, this squares with something Savely said she’s “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 ball game.”
I phone Paul and explain the itch-nerve theory.
“I can’t see how that relates to the physical condition,” he sighs. “I’ve got marks on my back that I can’t even reach. I’ve not created those by scratching.”
I ask how he has been. “Pretty crap, actually. 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. I can’t sign myself off sick or as having a degraded performance because morgellons is not a diagnosis. There’s no legitimate reason for me not to be operating at full speed.”