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The wood for the trees

2015; Elsevier BV; Volume: 2; Issue: 1 Linguagem: Inglês

10.1016/s2215-0366(14)00139-4

2215-0374

José Andrés Sáez Fonseca,

Mental Health and Psychiatry

In 1999 I was preparing for the Royal College of Psychiatrists' membership exams. I remember reading up on schizophrenia and going through the list of Schneider's first rank symptoms. The way the disorder was described struck me as odd from the very start. I looked at the list and thought two people with completely different symptoms—no overlap at all—could both have the same disorder. They could also have the exact same symptoms, but one person could have developed them in their teens and the other person in their 50s; no problem. I dismissed this thought as an idle musing and went back to revising. At that time I was working at an inner-London rehabilitation ward that catered to patients who had a history of homelessness. It was then that I met Jacks and Mr B. I spent a lot of time with them, talking to their families and friends, and interviewing them about their experiences. I did my best to see things from their point of view. Their presentations resonated with my intuition. Here is what I believe their experience of their illnesses was like. I don't presume to speak for them, but I will use their language rather than that of the diagnostic manuals. Jacks is 46 years old when I meet him. His bloodshot fearful eyes remain fixed on mine for longer than is comfortable. It is August and he wears dark brown corduroy trousers and hiking boots. He also sports a green knitted cardigan, a grey suit jacket shiny with age, a woollen multicoloured hat, and a bright purple padded coat. He slowly stands up and comes towards me warily. He is trying very hard to smile but only manages a brittle, forced expression closer to a grimace. I shake his hand, which feels dry and too warm. I introduce myself and we sit down to talk. We do this many times over months. I want to think he is less scared of me as time goes by, but I am not sure. Jacks lost control of his life in 1989, just after his 35th birthday. The whites in the satellite, he tells me, could not do much at first, but it didn't take them long to start eroding his defences. They zapped him with laser beams, sapping his strength and made it clear that he was not wanted where the whites lived. This was no place for him—no place for his people. Eventually, the whites in the satellite learned how to use its laser beams to control almost every aspect of Jacks' life. They could crush his lungs or block his liver; they could even make his heart stop at any moment if they wanted. They also did things to his mind. They would suppress and take away any thoughts they did not like and they would put in the thoughts they wanted him to have. They made Jacks say mad things and act in mad ways, so eventually he drove away his wife and daughter. The whites in the satellite pushed him onto the streets to punish him. Who did Jacks think he was? He should not live in a nice home. He should not have a nice family. They punished him for his audacity. He should be out on the streets; that was all Jacks deserved. Every time Jacks tried to get in touch with his family, the beams of the satellite would make his lungs collapse and his heart race. He felt like his chest would explode. When he changed his mind, the satellite would ease off and he would be able to breathe again. Because Jacks kept defying the satellite it sent him to a bus stop, out in the cold. The satellite chained him to it with its laser beams and only allowed him to go a few steps away, into the park behind the bus stop, when he wanted to use the bathroom. Eight winters went by. A kindly couple brought food to the bus stop for him. He could see the laser beams zapping them, making them give him food so he would not die and thus be free of the torture. He could not blame them—they did not know any better. He tried to talk to them and ask them to leave him, but the satellite zapped his voice away. I meet Mr B as he talks animatedly with one of the ward nurses. He looks like he is in his late 60s, but on his file it says he is 55 years old. The tone of voice is that of someone narrating an amusing anecdote, but the words he speaks are completely divorced from one another. He is standing with his back to me—too thin and too tall for his clothes. He moves in a constant dance, his movements arranged to some fast-paced unheard music of erratic tempo. The first few times I stand beside him to talk—he never sits for any length of time—I make the mistake of thinking his speech is all nonsense. I persevere and gradually I am rewarded with a glimpse. I discover it is possible to play Tetris with his words until they make some sort of sense. He tells me he used to be a doctor. He also used to be an army officer, a robber, a husband, someone called “Scampi Jack”, a prison warden, and a motorcycle rider, among other things. He was all these things. He actually is all these things. He, they—when he was in Plymouth or America or maybe Rome, he was so much more. He collects £3 a day. He used to be rich, didn't he? He feels happy and angry and dejected and cheated and lost and ecstatic and betrayed and runover. He remembers being very intelligent—the most intelligent man there was. But then they got jealous, or maybe envious, or both. He was in the army doing medicine then, he remembers that. They took him away; lots of them, faceless grunts dressed in white. They took him, strapped him, held him down, and violated him. They shocked his brain and took away his intelligence, his memory, and his knowledge. Now he cannot think straight. All he had ever been was taken away in one second, like a lightning strike. There was a doctor. There have been many doctors. He is a doctor and he knows what we are up to. He tells me we doctors continue to do the same thing, over and over and over and over: send our grunts after him. He takes our tablets, which turn him into an idiot, and then we tell him: “See? You are unwell, you need the tablets.” But he knows better: he was in the army in America, he was a prison officer in Egypt when he was married to an Irish woman (or was that his mother?), and he was a doctor when he was 14 years old. We turn him into an idiot with our tablets, but some of us make for decent companionship, occasionally. Sometimes he knows he is not a doctor, sometimes he realises he has never been an army officer, sometimes he remembers that he was never a prison warden, sometimes his thoughts are not scattered about all over his brain and he knows he has been very confused since he was a little boy. None of the lives he has lived are real and his real life has been a long prison sentence. Those are the worst times. Jacks and Mr B both have schizophrenia, and their treatment is the same. It does not work very well for either of them. While Jacks has delusions, hallucinations, passivity phenomena, thought alienation, and panic attacks, Mr B has a severe form of thought disorder. His beliefs were ever-changing, so I would not even be able to call them delusions. Jacks became unwell aged 35 years, and it is likely Mr B was never well. The processes whereby they each developed their respective disorders must have been very, very different. The list of symptoms for Jacks does a particularly bad job of conveying how the illness has completely taken over the machinery we all have in our brains to make the model of reality that we use to interpret the world. All his experiences map onto a few basic tenets he holds. His explanatory system is complete and self-contained, allowing him no access to how anybody else makes sense of the world. Mr B's model of reality is ever-changing and, more importantly, his ability to use and process language is almost completely lost. In fact, his illness started so early that it might not have ever fully developed. I used to think that he had something better described as a functional fluent aphasia rather than schizophrenia. There have been some attempts at describing endophenotypes in schizophrenia, and starting in 2003 research findings reported by Gottesman and colleagues. 11 years later there is no established method to characterise and investigate these subtypes, even if they truly are a way forward. In September, 2014, Arnedo and colleagues described 42 single nucleotide polymorphism clusters in DNA associated with eight distinct symptom clusters in schizophrenia. These clinical symptom clusters do not bear much resemblance to the subtypes recorded in the International Classification of Diseases or the Diagnostic and Statistical Manual, which we have used in the clinic and in research for most of my career. I get the feeling that we have been describing several very different disorders by the way they look rather than by what they are. It's like lumping together starfish, snowflakes, and your hands because they are all happen to be vaguely star shaped. Comparing Jacks' and Mr B's cases, they seemed to me to be completely at odds with one another. I cannot help but think that Mr B had some type of a neurodevelopmental disorder—perhaps one of those eight clinical syndromes Arnedo and colleagues described. In Jacks' case, I always wondered whether an acute event or some type of exposure happened to him; after all, he was reasonably well adjusted by all accounts before the onset of his illness. To me at this point in time, the term schizophrenia is the worst possible compromise. It does not seem to describe the disorder well enough to account for how radically it can change the reality someone lives in. Additionally, I believe it can prevent people from thinking; for instance, nobody ever even thought of scanning Jacks' brain. It focuses on psychotic phenomena when cognitive impairment is probably the symptom that tells you the most about prognosis. However, when I made this point at a mental health review tribunal, the panel—and, in particular, the doctor—looked at me with scepticism and disbelief. The constellation of symptoms seems to be highly heritable, but the loci are so varied and diverse that any conclusions are difficult to draw. Perhaps this new approach by Arnedo and colleagues, looking at clusters of mutations rather than the effect of a single mutation, is a better way forward; it seems, for example, to improve prediction of the presence of specific symptom clusters. However, even if this genetic variant approach proves to be helpful, I still believe that some presentations are completely acquired. These cases tend not to be fully investigated and are labelled simply as schizophrenia because they seem schizophrenia-like. I keep going back to what Thomas Insel, director of the US National Institute of Mental Health, said in 2013: “The strength of each of the editions of DSM has been ‘reliability’—each edition has ensured that clinicians use the same terms in the same ways. The weakness is its lack of validity…Patients with mental disorders deserve better.” I do not think schizophrenia is valid. If we ever hope to help Jacks and Mr B and many others like them, we must do better.