Rod Liddle

Why can’t we get our minds around ME?

The poisonous emails, the threats, the rage – it’s all rooted in our crude attitude to psychiatric suffering

Why can’t we get our minds around ME?
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Do you ever wake up worried that you have tiny fibres growing beneath your skin, all along your spinal column? Possibly wriggling little fibres, placed there by the government or by aliens? By aliens I don’t mean asylum seekers but proper aliens, quite probably creatures with bifurcated tongues and scaly lips from the Planet Zog. If so, you may well consider yourself to be suffering from ‘Morgellons’.

This unfortunate condition had its heyday at the turn of the century, with hundreds of thousands of people reporting to their GPs and clinics in the USA and here, pleading to have these little fibres sorted out somehow. Millions and millions of dollars were spent investigating the medical causes of the supposed disease, which also had symptoms of lethargy, torpor, inability to sleep, aching joints and limbs, pain — remember these symptoms, please, they will come in handy later on in this article. Another symptom was a blind fury on the part of sufferers at any suggestion that their illness could be in any way psychiatric in origin. It was other stuff, mysterious stuff, some of which I mentioned above, but also maybe viruses or pollution or weird electro-magnetic business. And there was a conspiracy on the part of doctors and politicians and journalists to cover it all up.

I remembered the fury with which Morgellons sufferers — and one way or another those people were suffering, remember — prosecuted their case when I wrote a short blog about another illness with a somewhat ectoplasmic pathology — ME, or chronic fatigue syndrome, or yuppie flu (call it what you want). The same blind fury. I copped it rather less than the experts who have investigated this condition and come to the conclusion that it too has a significant psychiatric component, a point of view generally shared by the medical profession (even if they are sometimes a little reluctant to come out and say it, for understandable reasons). The principal British researcher, Professor Simon Wessely at King’s College London’s Institute of Psychiatry, held that ME was almost certainly a psychiatric condition — and that was when the death threats started.

So much splenetic odium, so much hatred — aimed at a man who had wanted to help sufferers. He gave up, and so did his researcher Professor Myra McClure, driven out by the loathing. Major symptoms of ME? Lethargy, torpor, inability to sleep, aching joints and limbs, pain. No discoverable medical cause. No discernible medical cure. Given the intense activity of some ME sufferers, the poisonous emails, the threats, the rage, two things occurred to me. First, that their lethargy and torpor was clearly in remission. And second: that if, as most of the medical community believes, ME had a psychiatric basis, then ME was the least of their problems.

Wessely mused, perplexed, that these people would far rather their illness had an untreatable viral cause than a psychiatric basis which might easily be treatable. Why would they want that? The ME lobby instead put their faith in a research programme at Columbia University in New York which investigated links between ME and the very nasty, distantly HIV-related viruses XMRV and P-MLV. But the researchers concluded that there was no link. More recently another study has suggested that the symptoms of ME might be alleviated by cognitive behavioural therapy and a bit of exercise. Hence my blog.

And then there is fibromyalgia. These multifarious and deeply mysterious ailments of the advanced capitalist world! (There are no sufferers of ME or fibromyalgia or morgellons in, say, Chad.) Each with its own hastily bolted-on historicity, although in truth they were all unknown 40 years ago. Fibromyalgia’s major symptoms: aching joints, lethargy, torpor, inability to sleep, pain. Affects, according to its support group, one in 25 of the UK population — that’s 2.6 million people. And none in, say, Burkina Faso, so far as we know.

Of course, new illnesses occur. And of course we learn more about medical conditions which in the past we might have dismissed through ignorance. But the problems we have in dealing with ME and fibromyalgia seem to me to be a consequence of our primitive approach, collectively, to psychiatric illness. The stigma of mental illness — and the prejudice that if it’s rooted somewhere in the mind, it can’t be ‘real’. But of course it is real, every bit as real as if it were occasioned by a virus, or by aliens. These people — all of them — suffer, and perhaps the ones who shriek the loudest when told that their condition is primarily psychiatric are suffering most of all.

I say primarily psychiatric, but there is no Manichean division between body and mind; they are one and the same. I speak as someone who has suffered panic attacks, which can be terrifying. The manner in which the body brilliantly mimics a heart attack when these occasions occur is an immediate riposte to those who say that this stuff isn’t ‘real’. It takes hard work and concentration to keep the attacks at bay, plus exercise. One day I will die of a heart attack having assumed that it is simply another panic attack — come on, Rod, breathe deeply and focus on something nice, such as Caroline Flint addressing the Labour conference with those cold dead eyes of hers. Hell, it won’t be a bad way to go.

But I do wonder about the propensity of our lifestyle here in the affluent but relentlessly striving West to conjure up these undeniably debilitating ailments; add ME and fibromyalgia and panic attacks to stress and depression — that’s an enormous number of people, unhappy and averse. And clearly in some way hurting.

Morgellons is now consigned to the file marked ‘delusional parasitism’, although there is still a research programme in operation at the University of Oklahoma, under the guidance of a man called Dr Randy Wymore. Keep checking for those tiny wriggling fibres, then.