It’s time to stop separating psychiatry and neurology
In 1987, I went to work as a trainee psychiatrist at the National Hospital for Neurology in Queen’s Square in London. One of my jobs was to see a group of patients who were not popular with the neurologists who ran the place. The patients had symptoms that might have had a neurological explanation — muscle pain, inability to walk, being unable to think clearly, feeling exhausted after the most minimal physical or mental exertion — yet the neurologists thought that they were at best suffering from depression or at worst swinging the lead. They found it irritating that the patients insisted they had an illness called ME (myalgic encephalomyelitis). ‘I can’t understand why they think it’s an encephalomyelitis,’ one neurologist told me. He was a world expert on encephalomyelitis, an extremely rare and usually fatal inflammation of the brain. He then referred a patient to me with a note: ‘Dear Simon, please see this patient. There is nothing wrong with her.’
But there was. The more I saw, the more convinced I became that the condition was a genuine, serious, debilitating illness. Doctors never liked the term ME, however, and soon afterwards we started to follow the American lead and call it Chronic Fatigue Syndrome (CFS). At that time, patients at ‘the Square’, as the hospital was called, were usually told that the only thing they could do was to rest and either hope that the condition would go away or that doctors would come up with a magic bullet.
I started, with a group of other doctors, to try to do better. Over the next two decades, we developed two different approaches to rehabilitating CFS patients, based on the idea that even if we didn’t know what caused the illness, we could still help patients manage their symptoms and regain control of their lives. Our two approaches were named Graded Exercise Therapy and Cognitive Behaviour Therapy. The evidence soon showed that they worked. In 2007, some 20 years after we started, the National Institute for Health and Clinical Excellence approved both treatments as safe and effective.
I am proud of what we achieved. We set up what was the first and is now probably the largest NHS service for CFS sufferers. We have now seen over 3,000 patients, and the majority of them are very grateful for the treatment they have received. Trawl the internet, however, and you will find some who claim that I and other professionals are the architects of a vast conspiracy to cover up the real nature of the illness, that we portray CFS sufferers as malingering neurotics. They say we are denying its sufferers their treatment and benefits by falsely claiming that the condition is ‘all in the mind’, i.e. non-existent— which has never been our view. The evidence is that, like most illnesses, CFS is a mixture of the physical and the psychological.
Our critics have devoted much energy (irony intended) to denouncing us as pawns of the drug or insurance industries. I have been called a new Dr Mengele, the next Dr Shipman; somebody said that my wife is a ‘rat who should be thrown into a cage with infected mice’. One blogger wrote a post addressed to me in which he called me ‘the born personal physician of Heydrich, Goebbels or Hitler’. I am frequently accused of having thrown a CFS-suffering child into water to see if he would sink or swim.
OK, let’s keep a sense of proportion. It’s only a small number of people who do this. I have been seeing CFS sufferers now for over 20 years and our patients bear little resemblance to the internet extremists. They are perplexed, uncertain, and desperate for help from whatever quarter, provided that they are treated with respect by someone who believes they are ill. Nor are they anti-psychiatry.
For the outraged minority, however, being referred to a psychiatrist or psychologist is tantamount to being told that the symptoms are imaginary. It is understandable that people are sensitive on this matter. But the solution must be to address their misunderstandings, rather than assuming that CFS will only be taken seriously when psychiatrists are removed from the scene.
My mother told me that to specialise in psychiatry, I would need a thick skin. Usually I have one. But three things here anger me. First, the repeated claim that we don’t think our patients have an illness. They do, and to say otherwise is insulting.
Second, even if you don’t think that the treatments we pioneered are for you, it is wrong to try to stop others from benefiting from them. At present, the treatments pioneered at Queen’s Square are the best we have. They are by no means a cure — but nor are the treatments that we offer to sufferers from rheumatoid arthritis, MS, Parkinson’s, schizophrenia and many more. No one would advocate leaving them without any prospect of treatment.
And last, the malign tactics of the minority have helped to delay scientific progress: numerous scientists in other fields, including neurology, immunology and virology, have dipped their toes in the water of CFS, been scalded and given up.
It’s not so much the threatening emails and blogs that rile. It’s the more insidious stuff, the efforts to prevent my colleagues and me from doing our work: the bogus allegations of misconduct to ethics committees; the ridiculous claims to journals that we have hidden conflicts of interests; the long dossiers of imaginary sins sent to colleagues — the claims go on and on. The worst is the deliberate falsification of what we have said or written: quotes are circulated with the essential word ‘not’ deleted, for instance. And transcripts of our speeches are sometimes altered so that ‘yes’ becomes ‘no’.
How has it come to this? In the 19th century, psychiatry and neurology were not really separated, and even at the start of the 20th century, psychiatrists were still interested in the science of the brain, while some neurologists were skilled in the growing field of psychological rehabilitation. But the influence of Freud and his followers — who did believe that many illnesses were ‘all in the mind’ — led to an increasing separation of the two disciplines.
By and large, the current generation of psychiatrists accept that many disorders — autism, schizophrenia, bipolar, OCD, Alzheimer’s and others — are disorders of brain function. Yet the division between neurology and psychiatry remains. It is almost impossible, for example, to train in both fields in this country, unlike in Germany. A few years ago, I attended a US conference in which a scientist proposed that what was needed in CFS was more brain imaging. ‘If we could identify the problem with the brain, we could tell patients it’s not all in their heads,’ he said, without apparent irony.
We should not accept this separation. The Medical Research Council allocates funds via a single board for both neurosciences and mental health. The World Health Organisation, which runs something known as the International Classification of Diseases, a Sisyphean attempt to bring order to diagnostic chaos, is now working on yet another revision. They should think seriously about following the MRC lead and merging psychiatry and neurology into one category. This would rid us of the ‘all in the mind’ slur, and let us get on with our jobs — improving the treatment of patients and their illnesses.