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Friday 2 December 2011



The Draft DSM-5 - Rip It Up and Start Over


What went wrong.

by John McManamy


DSM-5. In February 2010, The American Psychiatric Association’s DSM-5 Task Force issued a rough draft of its proposed changes to the DSM, psychiatry’s diagnostic bible. The document is available for viewing on the APA’s website.

The new version of the DSM, scheduled for publication in 2013, would supersede the current DSM-IV, in effect since 1994. (There is the DSM-IV-TR of 2000, which involved only minor technical adjustments.) The DSM-IV - and before that the DSM-III-R of 1987 - represented incremental changes to the groundbreaking DSM-III of 1980. The biggest change to the new DSM is the change from Roman numerals to Arabic. With the exception of personality disorders, substantive changes that reflect our understanding and knowledge since 1980 are few and far between.

Essentially, the new DSM tweaks our current system of classifying mental illness according to clusters of symptoms rather than underlying causes. In essence, the people who did the original legwork on depression, bipolar, anxiety, schizophrenia, and the like got a lot of it right on the first go. On the other hand, the brain science that promises to turn all our current assumptions upside-down is not there yet.

Where to start? Let’s go with my diagnosis - bipolar - as well as the bane of my life, depression. First some background:

Written observations on depression and mania go back to ancient times. How could Aristotle, for instance NOT notice Socrates and Plato acting weird? But observations do not equate to understanding, and, crazy as it sounds, what was beyond the grasp of ancients continues to elude today’s experts, namely:

How do depression and mania relate? Part of the same phenomenon? O
?r separate? A bit of both
How do depression and mania fit into the human condition? Natural temperament? Or outside force that takes over the mind? A bit of both?

Enter Kraepelin

By the last half of the nineteen century, medical science had connected depression to mania. “Folie circulaire,” the French called it. In the early twentieth century, the pioneering German diagnostician, Emil Kraepelin coined the term manic-depression. But here’s the rub - manic-depression to Kraepelin and generations to follow was not synonymous with what we now call bipolar. Manic-depression also embraced what we now call unipolar depression.

Kraepelin saw depression as a “recurring” phenomenon. Some individuals cycled up into raving mania, then back down into depression (often with long periods of remission). Others simply cycled up into milder states.

In essence, Kraepelin saw depression and mania as occupying opposite ends of the same spectrum, different but closely related, with the same underlying cyclic features. Kraepelin also viewed manic-depression as a biological illness, but nevertheless occupying a spectrum that embraced the temperaments that influence our personality.

Kraepelin’s model proved to be a bit too overreaching. In the 1960s, Jules Angst and others identified “chronic” depression and parsed it out from “recurrent” depression. But the Kraepelin model still held. During the 1970s, Frederick Goodwin and others regarded recurrent depression as a close cousin to bipolar rather than a sibling of chronic depression.

This bears repeating: The leading investigators of the day viewed manic-depression as embracing both bipolar and recurrent depression. Chronic depression was seen as a separate phenomenon.

Another way of viewing the spectrum, pioneered by Angst, is by conceptualizing “pure” mania at one end and pure depression at the other, with a lot of mixing it up in the middle. Thus, severe depression with a bit of mania might look like this - Dm - while hypomania with some depression would be represented as - md. And so on. Under this view, “mixed” states (think agitated depression or dysphoric mania) are seen as closer to the rule rather than the exception.
Enter Freud

Meanwhile, we had Freud to consider. Freud’s followers saw depression and mania (and other states) as not necessarily biological, but as maladaptive reactions to one’s environment. Freud was the dominant mindset of psychiatry when the APA published the DSM-I in 1952, replete with its inclusion of “manic-depressive reaction.”

Oddly enough, “manic-depressive reaction” embraced Kraepelin’s wide view of the illness, but as an outward expression of underlying psychosis. Since Freudian psychiatrists wrote off those they saw as “psychotic” as hopeless and uncooperative, there was little interest in working with these patients. Their fate was institutional neglect.

“Neurosis” and “behavior” by contrast, defined psychiatry’s walking wounded as well as its meal ticket. The DSM-I made provision for both depression, and manic-depression lite (cyclothymia) as either a manifestation of anxiety-driven neurosis or as embedded in one’s personality. This accorded with the Freudian mindset of rooting out the underlying neurosis or behavioral quirk rather than helping patients manage symptoms. Hence there was little professional interest in depression and other ills as entities unto themselves. Hence, there was little interest in the DSM.
Enter Spitzer

The DSM-II of 1968, largely a rerun of 1952, met with the same underwhelming response. But change was in the air. First-generation psychiatric meds, coupled with the realization that not many patients actually got better under Freudian therapy, give rise to a new era of diagnostic psychiatry, with Kraepelin as its inspiration. Leading the charge was Robert Spitzer, with a modest brief to tweak the DSM so it harmonized with international standards.

Spitzer had other ideas. With a strong supporting cast of psychiatric researchers who valued science over dogma, Spitzer set about producing a document that would allow professionals worldwide to communicate in the same language. A major innovation was the “symptom list” that represented a giant leap forward from Freud and his neurotic muck.

What was widely understood by those working on what was to become the DSM-III of 1980 was that their efforts would represent a work-in-progress. With psychiatric science in its infancy, it was a given that new data and new insights would supplant the best guesses that Spitzer and his team were coming up with. Mistakes were inevitable, but you had to start somewhere. Just so long as you could correct them later.

Just so long as you didn’t cement yourself into a corner for the next 30 years.
The DSM Cements Itself Into a Corner for the Next 30 Years

“Creative destruction” is a term popularized by Joseph Schumpeter in the 1940s to explain the necessary and typically heart-breaking disruption and chaos that gives rise to economic progress. Think changing times. The advent of the automobile put buggy whip manufacturers out of business. In turn, the likes of GM grew at the expense of smaller auto manufacturers. And the process continues today with GM fighting for its life in a new global economy.

It’s a never-ending cosmic dance of destruction and creation, exemplified by the Hindu diety Shiva.

A post-GM world, followers of Schumpeter would argue, promises to be a better one: Imagine a leaner and greener auto industry responsive to consumer needs and environmental realities. Yes, the transition is bound to be devastating, but indiscriminately trying to soften the pain, they would say, only leads to stagnation and decline.

In the field of psychiatry, the exemplar of creative destruction was Robert Spitzer, who boldly took on the cult of Freud and ushered in a new era of psychiatry. The ground-breaking DSM-III of 1980 and its follow-up DSM-III-R of 1987 were his great achievements. Thanks to Spitzer and his contemporaries, we seek out psychiatrists and therapists to treat our depression rather than undergo analysis to root out our neurosis.

Ironically, though, the unprecedented success of Spitzer's DSM spawned its own problems. Suddenly, we had “stakeholders” in the form of the insurance industry, the drug industry, the research establishment, not to mention psychiatry and its related professions. Oh, yes, patients too, but who listens to us?
The DSM - Case for Nuance

Overnight, the DSM became entrenched, incapable of correcting even its most obvious faults, incapable of folding in new insight. Take the current DSM’s view of depression - please! - which is virtually unchanged since the DSM-III. Yes, the DSM-III version is an improvement on the DSM-II of 1968, but at least the older view recognized the complexity of the condition and its context, namely:

The DSM-II viewed depression as both separate from (in the sense of “depressive neurosis”) and as part of manic-depression (in the sense of “manic depressive illness, depressed type”) and tied into anxiety (in the form of “involuted melancholia” and as the driving force of “neurosis”) as well as embedded into personality (as in “cyclothymic personality disorder characterized by depression”).

Moreover, the DSM-II distinguished between depression seen as a result of the mysterious biology of the brain (“endogenous”) and depression seen to be caused by a reaction to events (“exogenous”).

The DSM-III replaced all that with a monolithic view of unipolar depression, separating it out from manic-depression and anxiety and personality and doing away with the endogenous-exogenous distinction. Instead, for the first time, we were treated to the famous and extraordinarily arbitrary nine-item symptom checklist.

Viewing depression as a single and non-complex entity offers the advantage of clarity in a world where clinicians and other interested parties need to be speaking the same language. The problem occurs when this simplistic view encourages equally simplistic treatments.

(Yes, the current DSM distinguishes the likes of melancholic from atypical depression and makes room for depression with psychosis and the like, but only if the full criteria is met for a depressive episode.)

In my book, "Living Well with Depression and Bipolar Disorder," I cite a 2004 article by Gordon Parker MD, PhD of the University of New South Wales in support of the proposition that this one-size-fits-all view of depression results in clinical trials that indiscriminately lump all patients together, with no regard to critical distinctions that may spell the difference between success and failure.

We know for instance that an SSRI antidepressant such as Paxil gets 50 percent of patients with “major depression” 50 percent better over a period of about six weeks. This is good enough for the drug companies, who now have a license to print money, but what about the patients? Who wants a 50 percent chance of success? And who wants to be just 50 percent better?

What do we know about Paxil, anyway? Does it work better on a patient whose depression is marked by sadness? If so, is it possible to target this group of patients? Maybe then we would be seeing 80 percent of these individuals getting 80 percent better.

And try this on for size. Maybe a patient whose main feature is lack of motivation (about which the DSM has nothing to say) would benefit from something else, as would depression brought on by stress (the type of “exogenous” depression axed from the DSM-III). Maybe these drugs don’t exist. Maybe Pharma would be encouraged to develop them. As Dr Parker in a 2007 piece concludes:

Depression is a diagnosis that will remain a non-specific "catch all" until common sense brings current confusion to order. As the American journalist Ed Murrow observed in another context: "Anyone who isn't confused doesn't really understand the situation."

In other words, never mind what is convenient to the industry-professional-research establishment. To move forward, first we need to journey back to the naive and confusing DSM-II and acknowledge that the real world of depression is highly nuanced and complex. Then, maybe we could deploy our modern knowledge to develop a new and sophisticated, but no less confusing, understanding.

Instead, the DSM-5 Mood Disorders Work Group in a report from April 2009 signaled it was using the DSM-III (upon which the DSM-IV is based) as its starting point, noting that a subgroup was reviewing “whether there is sufficient data to support adding or removing symptoms” to or from the major depression checklist.

Often, the results justify working off an existing document. But no changes? With no explanation? After all we have learned since 1980? With our lives at stake?

In my two report cards grading depression and bipolar, I handed out grades in a total of 39 assignments, including F-minus (at 17) and F (8), plus a “no-grade” in a case where an F-minus would have been far too generous. Throwing out my four incompletes and three “no-grades” for extra credit, the fail rate was a stunning 81 percent. A lone B was my highest grade.

So what went wrong?

For one, the DSM-5 operating parameters were far too restrictive, involving an impossible burden of proof for even minor changes. The DSM-5 operated under the mistaken assumption that they were drafting a research paper that would be read by maybe 30 people instead of putting together a real world manual that would be relied on by millions worldwide.

In short, the DSM was never meant to be a science project. In the real world, we proceed on the best information we have available to us. This information may not always be “scientifically valid,” but it does yield results that are both useful and credible.

Instead, we bore witness to DSM-5 work groups tripping over their own feet. For instance, the draft explicitly recognized that “the current DSM-IV-TR diagnosis schizoaffective disorder is unreliable,” yet did nothing to make it reliable.

This was repeated throughout, though usually implicitly. Thus 30-year errors that defied both science and common sense (such as artificially separating out unipolar from bipolar) were being perpetuated. Thus, easy fixes with at least some measure of validity, that would lead to more precise diagnoses and save lives, were being excluded.
Enter Thomas Kuhn

Other factors were at play, too. Let’s discuss “paradigm freeze.” The DSM-5 pays homage to scientific validity, but thanks to Thomas Kuhn and others we know that the quest for knowledge is hardly governed by disinterested scientists rationally sifting through the facts. In reality they are operating within their own particular conceptual frameworks (paradigms) that govern how they think.

The various DSM-5 work groups drew from the top experts in the field, but this was a fairly homogenous bunch, working within the same specialty, with similar professional backgrounds, operating off the same set of beliefs, inclined to nitpick at best. The field’s notable boat-rockers, as it turned out, were conspicuously absent. (Why wasn’t Hagop Akiskal on the mood disorders work group? Or, at the very least, one of his Facebook friends?)

Thomas Kuhn emphasized that paradigm shifts are not initiated by science’s in-crowd. Rather, they are brought about by outsiders - young practitioners and those operating in different fields. That shift is only a decade or two off in psychiatry. What needs to happen is for our nascent brain science and its allied disciplines to mature, along with new ways to explain old behaviors.

Then, instead of depression or bipolar or schizophrenia, we’ll be treated for things like “surprachismatic nuclei disease” and - supreme irony - “neurosis.”

I have been to public forums where the DSM has been debated, and I know for a fact that those on its working groups are fully aware of the impending shift. Indeed, some are even leading it. But this awareness has only seemed to immobilize them. They see the car approaching, but are frozen in its headlights.

In the meantime, we with the most at stake can hardly afford to wait for the inevitable paradigm shift. Mental illness kills. Simple. Making the changes we need to the DSM right now will hardly satisfy the conceits of scientists (old paradigm or new), but it will save lives.

Can someone explain this simple fact to the DSM-5 people?

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