DSM wars: the battle to define mental illness

Gary Greenberg's feature in this month's Wired, "Inside the Battle to Define Mental Illness," is a captivating look at the controversy attending the creation of the next edition of the fifth edition of the Diagnostic and Statistical Manual of Mental Disorders. Editors of previous volumes have joined with skeptics from within the profession to protest the very idea of the DSM, saying that its "diseases" bear no relation to any particular neuropathology, and instead represent (at best), handy categories to put on insurance forms, and (at worst), a bonanza for the pharma industry, who get to produce pills that "cure" any disease that's defined in the DSM. Greenberg captures the mental health field at the cusp of an enormous transformation driven by better genomics, better imaging, and hence a better understanding of what connections various symptoms have to one another, to physical problems, to genetics, and to health. The DSM has always been controversial -- it's the document that turned homosexuality into a mental illness for years -- but never moreso than now.

At the party, Frances and Carpenter began to talk about "psychosis risk syndrome," a diagnosis that Carpenter's group was considering for the new edition. It would apply mostly to adolescents who occasionally have jumbled thoughts, hear voices, or experience delusions. Since these kids never fully lose contact with reality, they don't qualify for any of the existing psychotic disorders. But "throughout medicine, there's a presumption that early identification and intervention is better than late," Carpenter says, citing the monitoring of cholesterol as an example. If adolescents on the brink of psychosis can be treated before a full-blown psychosis develops, he adds, "it could make a huge difference in their life story."

This new disease reminded Frances of one of his keenest regrets about the DSM-IV: its role, as he perceives it, in the epidemic of bipolar diagnoses in children over the past decade. Shortly after the book came out, doctors began to declare children bipolar even if they had never had a manic episode and were too young to have shown the pattern of mood change associated with the disease. Within a dozen years, bipolar diagnoses among children had increased 40-fold. Many of these kids were put on antipsychotic drugs, whose effects on the developing brain are poorly understood but which are known to cause obesity and diabetes. In 2007, a series of investigative reports revealed that an influential advocate for diagnosing bipolar disorder in kids, the Harvard psychiatrist Joseph Biederman, failed to disclose money he'd received from Johnson & Johnson, makers of the bipolar drug Risperdal, or risperidone. (The New York Times reported that Biederman told the company his proposed trial of Risperdal in young children "will support the safety and effectiveness of risperidone in this age group.") Frances believes this bipolar "fad" would not have occurred had the DSM-IV committee not rejected a move to limit the diagnosis to adults.

Inside the Battle to Define Mental Illness

(Image: Wired/Garry Mcleod/Robert Lang)

• [headcode]

  I see we have Jonathan Badger and a few others, and then we have a lot of people with pop psychology degrees who seem to think that just because Western medicine isn’t perfect then wolfing down St. John’s Wort and “relaxing” are the keys to treating illness.

  It seems like everyone’s favorite pastime on web forums is pretending to be an expert about something they have done very little to no research on and then telling people who have spent years studying and thinking carefully about a topic that they don’t know what they’re doing. Like Daemon above, for instance.

  • [Ito Kagehisa]

    I see three groups:

    1) one which apparently believes that only petroleum products administered by white-clad high priests of corporate medicine can assure health.

    2) one which believes that all medicine prescribed by doctors is poisonously unnecessary, and that all ailments can be treated by diet or meditation alone.

    3) the rest of us.

    Damn, I was cranky yesterday. Sorry about that.

    Mad props to Antinous’s grandmother! Respect!

• [apoxia]

  As someone almost finished my clinical psychologist training here in New Zealand I would say that the DSM is most controversial to those in the profession, probably because we know it fairly well inside-out and back-to-front. The idea that it defines discreet “diseases” that should therefore have effective “cures” is not an idea I’ve come across in training or among any of the psychologists I know. In general the medical model is eschewed for a bio-psycho-social model, even for the most “organic” syndromes such as bipolar and schizophrenia. I like to think of them as syndromes or collections of symptoms which have huge numbers of presentations even within a single diagnostic category. I suppose what I’m trying to say is that at least in clinical psychology in New Zealand clinicians are aware of the problems and don’t tend to be blind-sided by drug companies (not being able to write prescriptions would have a lot to do with this!).

  • [Anonymous]

    I’m a clinical psychology student in the US and my experience with the DSM has been the same.

• [Antinous / Moderator]

  Rumor has it that NPD and related diagnoses are being deprecated. This may have a dire effect on comment thread diagnostics.

• [MengerSponge]

  I think you’re arguing about two very different levels of severity. I don’t know much about diabetes specifically, but obviously there are chemical causes and effects which can be balanced through medication. But I also know there are a lot of cases (at least with other illnesses; I’m mostly thinking of depression) where lifestyle changes may be enough.

  I agree 100% that viewing drugs as an evil tool pushed by Big Pharma is an extremely dangerous position, both to the individual and to the population (just look at the anti-vaccine movement). At the same time, there is often a rush to start treatment with drugs at the first sign of a problem; this can be equally dangerous in cases where it is unnecessary. Often these drugs do have significant side-effects, and if someone can reduce or eliminate their symptoms by changing their diet and getting some exercise, that’s probably the better option. (Again, I have no idea if this works or not in diabetes cases specifically, I’m speaking more generally.)

• [ericroded]

  “Greenberg captures the mental health field at the cusp of an enormous transformation driven by better genomics, better imaging, and hence a better understanding of what connections various symptoms have to one another, to physical problems, to genetics, and to health.”

  Hmm, no mention of environment or personal history.

  I guess they’re just out to medically diagnose and medically dispense.

  What other path than medical solutions are there for simple physical measurements?

  Will the answer be more drugs?

  Surgery?

  Genomics?

  Is the answer all Nature and no Nurture?

  Instead of birthing mental monsters will we now cull them?

  The dangerous direction here is not in the DSM but in this rather lazy approach of Brain Biology and phrenologistic Genomics that disregards the human relationship with its environment, a product of which the human’s genome certainly is.

• [Anonymous]

  Blaming the DSM for misdiagnosis of children is like blaming the carpenter’s hammer when a building falls down. Doctors have certain diagnoses they are just more likely to make, sometimes erroneously. Sometimes that’s just a habit, sometime patient expectation, sometimes a drug company is pushing the doctor to diagnose disease X for which they sell drug Y, sometimes the insurance company won’t pay to treat disease Z but if we pretend it’s disease X we can get the patient in the hospital and treat what’s really wrong. Your diagnosis has a lot to do with which door you knock on. None of that is the DSM’s problem.

  The whole point of the DSM is to have an agreed set of diagnoses, with specific criteria for each, so psychiatrists don’t just wing it based on their own prejudices. The DSM is the reason you can’t be “diagnosed” with being homosexual any more, or “diagnosed” with being a woman who doesn’t just want to be a housewife.

• [Daemon]

  The DSM is pretty insane when you think about it for a few minutes.

  It’s pretty much just a huge set of symptom checklists. If you have enough symptoms in the right list, then you are considered have the associated illness. There’s generally no attempt to check what, biologically, might be causing the symptoms, so everyone with the same symptoms gets the same treatment, even though it’s entirely possible for their symptoms to be caused by radically different problems.

  Not to mention that they’ll occasionally just take a bunch of symptoms and lump them together so as to invent a new ‘illness’. They don’t even have to be particularly bad symptoms. Being bored in school and wanting to go do something interesting was good enough for ADHD to be invented.

  • [Brainspore]

    The DSM is pretty insane when you think about it for a few minutes.

    Not according to the DSM!

• [Deidzoeb]

  Oh noes, please tell me this is not a cover story on Wired. Let me guess: “MENTAL ILLNESS IS DEAD!” just like the web is dead and science has ended, and anything else they can think of that would be effective troll-bait.

  If it’s a feature article, the content of it will probably be interesting and true, as long as readers know enough not to take seriously their tabloidy headlines, or any editorial bits or sidebars attempting to rationalize the tabloidy headline.

  I wouldn’t go so far as to say “WIRED MAGAZINE’S CREDIBILITY IS DEAD.” But if I wrote headlines for Wired, then I probably would.

• [Anonymous]

  As a psychiatrist-in-training, I’m getting tired of DSM hysteria. Most mental-health professionals (and ALL the mental health professionals I’ve ever worked with) have a balanced and nuanced understanding of the role the DSM plays in diagnosis and understanding illness, and calling it a “Bible” is a wild overstatement. Statements like “it’s the document that turned homosexuality into a mental illness for years” are misleading and fairly ridiculous. The DSM reflects society and changes within society, just like the rest of medicine. It is provisional by definition. You can code “academic problem” using the DSM but that doesn’t mean anyone believes it’s a mental illness. Some of these issues are addressed in the current DSM; these philosphical issues are not new. Here’s a quote from the DSM-IV-TR about the “Definition of Mental Disorder”: “no definition adequately specifies precise boundaries for the concept of “mental disorder.” The concept of mental disorder, like many other concepts in medicine and science, lacks a consistent operational definition that covers all situations. All medical conditions are defined on various levels of abstraction–for example, structural pathology (e.g., ulcerative colitis), symptom presentation (e.g., migraine), deviance from a physiological norm (e.g., hypertension), and etiology (e.g., pneumococcal pneumonia)….in DSM-IV, each of the mental disorders is conceptualized as a clinically significant behavioural or psychological syndrome or pattern that occurs in an individual and that is associated with present distress (e.g., a painful symptom) or disability (i.e., impairment in one or more important areas of functioning) or with a significantly increased risk of suffering death, pain, disability or an important loss of freedom….Neither deviant behaviour…nor conflicts that are primarily between the individual and society are mental disorders unless the deviance or conflict is a symptoms of a dysfunction in the individual.”

  Sure, psychiatry can be used for evil, but that’s not the fault of the DSM. Insurance companies using the DSM to deny patients care is a problem with the American system of insurance, not with the DSM itself. If you think this Wired article tells the whole story, why not flip through the DSM-IV-TR yourself at a library and see what you find? Or talk to any physician, psychologist, occupational therapist etc. who works in mental health care. Or talk to someone who struggles with mental health problems and see what their “formal diagnosis” (if they were ever given one) means to them.

  A new DSM should be an opportunity for optimism and excitement because it reflects new research and understanding…why is the media turning it into a frightening crisis that will result in the whole world being diagnosed against their will? Good grief.

• [Jonathan Badger]

  If something is an illness, obviously it has to be treated by a drug, as any real illness is either due to an infectious agent or a chemical imbalance. Does that mean that many “mental illnesses” are illusionary? Well maybe so. But the idea that a real illness can be treated by relaxing on a couch talking to a person is simply mysticism. Does anyone think diabetes can be treated that way?

  • [Antinous / Moderator]

    Your view of mental illness is eerily parallel to that of a 17th century villager. And by the way, stress affects insulin production, so yes, talk therapy, meditation, etc. can be an effective part of treating mild diabetes.

    • [Jonathan Badger]

      I’m pretty confident that if I ever develop diabetes, I’ll skip the meditation and take the insulin. And that’s based on my knowledge of how the pancreas works. Hint for those with less physiological background: no chakras are involved.

      • [Anonymous]

        Think of this for a moment. Imagine if someone hold a chainsaw in front of your face. This is obviously going to produce a reaction. Sweating, shaking, etc…

        Stress essentially does produces slighter reactions that produce change. Stress over a short to moderate period may not cause you any problems. However, if you already have problems such as the diabetes example, it will be exacerbated. All of this has pretty much been said, but the chain saw simply serves as a more easily recognizable comparison.

      • [Antinous / Moderator]

        I’m pretty confident that if I ever develop diabetes, I’ll skip the meditation and take the insulin. And that’s based on my knowledge of how the pancreas works. Hint for those with less physiological background: no chakras are involved.

        With Type 2 diabetes, you might not need to take insulin if you find other ways to manage it, including cognitive/emotional therapies as well as diet. But you seem pretty devoted to your bodily humors theory of illness, so I’ll leave you to your insulin regimen which, of course, has absolutely no side effects.

        • [Jonathan Badger]

          The pancreas works by providing insulin. Honestly, it frightens me how little non-biologists understand their bodies. This has nothing to do with with the Galenic humors, which has more in common with the mystical ideas of ayurvedic medicine, which you evidently prefer.

        • [Antinous / Moderator]

          Honestly, it frightens me how little non-biologists understand their bodies.

          It frightens me that the the sciences are dominated by people with an apparently biologically-based inability to perceive anything that doesn’t exist in vitro.

        • [gipszjakab]

          You wield your knowledge of biology as a big hammer. Perhaps this is why irony just flew over your head. There are a lot of things between shooting up ‘medicine’ and ayurvedic ‘medicine’. Some of them may be even helpful. (And denying the effect of diet on Type 2 diabetes is moronic.)

        • [Jonathan Badger]

          Obviously diet has a role — the insulin isn’t going to be very effective if you are wolfing down donuts at the same time. But the idea that a serious illness can be treated by diet and positive thinking alone is a deadly delusion that a lot of people seem to have. Yes, drug companies have downplayed negative complications in their products (as in the infamous Vioxx debacle). But this doesn’t support the conspiracy theory that drugs are unneeded products created by “Big Pharma”.

        • [pumuckl]

          Placebo Effect.

        • [Ito Kagehisa]

          Mr. Badger, this is a repeating theme in your posts:

          . But the idea that a serious illness can be treated by diet and positive thinking alone is a deadly delusion that a lot of people seem to have.

          You again take a ridiculously absolutist position that flies in the face of well-documented reality. Many people have managed serious illnesses with “diet and positive thinking alone” and the first step in optimal treatment for ANY incurable illness is determining how much can be done without recourse to industrial products such as pills that force patients to rely on complex and unreliable infrastructures which limit their ability to travel and enjoy normal social interaction.

          Please take the time to familiarize yourself with the peer-reviewed literature on the subject, which is extensive (and will require a significant investment of time before you will be able to comment intelligently on its content).

          Please refrain from asking for links to such literature, since you yourself never provide any documentation to support any of your claims. We here are not your study partners, we are participants in a conversation, and your constant insistence that we do homework for you is irritating in the context of your constant refusal to do the same work for others.

          I hope you will someday recognize that taking extreme positions on a basis of little knowledge and making blanket refusal to modify any position, once taken, is not an effective way of interacting on line.

          My apologies to the other participants here for this interuption.

        • [Antinous / Moderator]

          My grandmother had Type 2 diabetes, managed it entirely by lifestyle, never took any meds for it and lived to 100.

• [JaxSean]

  This is interesting in the context of my understanding of Foucault’s and power (vis-a-vis institutions for those diagnosed with psychological disorders).

  Instead of the state exerting that power, however, it seems corporations are. The ends of the state and those of the corporation are clearly different, but it is fascinating that the avenues for achieving power (whether over political dissent or markets) involve the same process – controlling the boundaries of sanity.

  Is there anyone that has more background to comment on this? I don’t want to be making a completely spurious connection…

• [Mira]

  Great post. The DSM is both very helpful, yet troubling at the same time. It’s intent is all too often abused, and I’ve watch all too many clinicians in my time use it as an alternative to critical thinking skills. Many patients don’t always fit a particular label-diagnosis, no matter how well intentioned…

  Then there’s my favorite – NOS (not otherwise specified) The ultimate wastebasket of diagnostics. We need a better way.

  I’d encourage readers to go take a look at GID-Reform’s site as well – http://www.gidreform.org/index.html

  Mira