This week, the American Psychiatric Association released proposed changes to the Diagnostic and Statistical Manual of Mental Disorders, or DSM. In an update to a story that originally aired in December of last year, Brooke looks at this powerful book and the controversies surrounding the proposed revisions.
Don't Worry, Be HappyArtist: by Bobby McFerrin
BROOKE GLADSTONE: There’s a saying that goes, “A good book is the best of friends, the same today and forever.” Consider the Diagnostic and Statistical Manual of Mental Disorders or DSM, that catalog of mind-based maladies designated by the American Psychiatric Association. Plagued by fears or fantasies, bad thoughts or bad behaviors? If the problem’s in your head, it’s in the DSM, charting your psychic pain since 1952. The next edition, the fifth in 60 years, isn't due out until 2013, but this week the American Psychiatric Association released a first draft of DSM-V for public comment. So now is the time when new disorders are debated. That’s why we're rerunning the piece you’re about to hear. This is a very big deal.
DR. DARREL REGIER: Because the disorder definitions that we provide are used by the FDA to determine whether or not new medication might have an indication for treatment.
BROOKE GLADSTONE: Dr. Darrel Regier is the vice-chair of the DSM-V Task Force.
DR. DARREL REGIER: It’s used by the NIH to assess the type of disorder that somebody is asking to research. It’s also used by Medicare, Medicaid and insurance companies to identify the condition that somebody is requesting payment of treatment for.
BROOKE GLADSTONE: Most important, it’s used by doctors to define what’s normal and what’s not. It was the DSM that officially declared homosexuality a mental disorder, and then in 1973 officially undeclared it. It’s defined an ever-expanding range of phobias and addictions that we're still arguing about, but this time demands for more transparency aim to crack open the window on DSM deliberations, so interested parties can weigh in before they are enshrined, because once they are, the FDA approves drugs to treat them, and any further debate is drowned out in the flood of direct-to-consumer ads.
FEMALE ANNOUNCER: Premenstrual Dysphoric Disorder.
[SOUND TRAILS OFF/UP AND UNDER]
BROOKE GLADSTONE: PMDD, a form of PMS affecting roughly five percent of menstruating women - it’s so severe it impairs their ability to function.
FEMALE ANNOUNCER: The first and only medication for PMDD.
When the Sarafem commercials came out was when I got, you know, the ah-ha.
BROOKE GLADSTONE: Stef Prose was being treated for depression, even though she rejected that diagnosis and felt stigmatized by it. When she saw the Sarafem ad depicting her rages and her guilt, she finally felt she had a real diagnosis and was deeply relieved and grateful.
STEF PROSE: And immediately I called my doctor and said, this is what I have, I want depression [LAUGHS] taken off the record.
BROOKE GLADSTONE: Like so much in the DSM, the diagnosis of PMDD is a judgment call but Stef Prose, who blogs about PMDD at Lifewpmdd.com, has no trouble passing judgment on whether it should be in the DSM.
STEF PROSE: My answer is yes. Trying to go to work every day and getting the energy to do it, it does, it affects you every single day. And to me, that is a disorder.
BROOKE GLADSTONE: PMDD has languished in the appendix of the DSM, signifying that the jury is still out. It’s a hot-button issue because, you know, this one’s just for the ladies, and could be used against them, all of them.
STEF PROSE: I hadn't really thought about it. I guess the way I look at it is, it is kind of a sexist disease. [LAUGHS]
BROOKE GLADSTONE: Sarafem, just Prozac in pink, is still available, but the FDA demanded that Eli Lilly pull the ads because they described the symptoms of PMDD so broadly that they were virtually indistinguishable from what most women experience as PMS, a condition not currently up for inclusion in the DSM.
DR. JONATHAN METZL: If we are in the business of treating PMS with psychiatric drugs, in part what we're saying is that there is a level of insanity to the suffering of PMS.
BROOKE GLADSTONE: Jonathan Metzl, psychiatrist and author of Prozac on the Couch: Prescribing Gender in the Era of Wonder Drugs.
DR. JONATHAN METZL: We know that when the industry drives diagnosis, there’s a process that happens that Peter Kramer, in Listening to Prozac, beautifully described as “diagnostic bracket creep.” People start to come into doctor’s offices and say, I know this drug is indicated for a particular illness, but I've kind of got that. And the doctor says, that sounds good enough - we'll give you this medication. And what happens over time is that the diagnostic boundaries expand and expand and expand, so that a drug that was indicated for a very small subset of people over time becomes indicated and used for a much wider category.
CHRISTOPHER LANE: Fifty percent of the population defines itself as shy.
BROOKE GLADSTONE: Christopher Lane is the author of Shyness: How Normal Behavior Became a Sickness.
CHRISTOPHER LANE: An enormous number of people have a profound dislike of speaking in public, but that doesn't mean they suffer from a psychiatric condition. And the effort on the part of these psychiatrists and the APA to broaden the net and include Internet addiction and compulsive buying disorder and apathy disorder, relational disorder, all of these are basically codes for everyday experiences and fears and anxieties that should not be represented in a psychiatric bible.
DR. MICHAEL FIRST: The issue with all mental disorders is they're defined in terms of symptoms that we all experience every day as part of normal living.
BROOKE GLADSTONE: Dr. Michael First worked on the third DSM and was an editor of the fourth.
DR. MICHAEL FIRST: Sadness, anxiety, palpitations, these are all normal phenomena. It’s only when they're sufficiently severe enough and clustered together that they begin to look like they're a potential mental disorder. So if you add a mental disorder to the DSM and it’s defined in terms of everyday symptoms, you always run the risk of labeling someone who is normal with having a disorder.
BROOKE GLADSTONE: The DSM Task Force is keenly aware of the risk of what are called “false positives,” a risk driven home in 1972 by psychologist David Rosenhan, who conducted a study in which eight mentally healthy people gained admission to 12 psychiatric hospitals in five states by claiming to hear a voice saying “empty” or “hollow” or “thud.” That was their only deception. Other than that, they behaved normally. All but one was diagnosed as schizophrenic. After admission, they said they felt fine and their behavior reflected it, but it took them from 7 to 52 days to be discharged, with a diagnosis of schizophrenia in remission. When the study was published, two psychiatric hospitals agreed to undergo the same test. Could they identify the fakers? In fact, they identified dozens of them, only none had actually been sent.
DR. MICHAEL FIRST: One of the big challenges of psychiatric diagnosis is the fact that it’s still descriptive. It’s based upon the way patients present.
BROOKE GLADSTONE: Is this why we're all desperate for genetics to come up with, hey, you have a super short, you know, Q gene, therefore, that’s the cause of your condition?
DR. MICHAEL FIRST: The reason why we haven't discovered the gene for schizophrenia is there is no gene for schizophrenia. It’s a complex interaction of so many different factors. I would have imagined that after 15 years of research, given all of the advances, we'd have to have a lab test by now.
BROOKE GLADSTONE: So, diagnosis is still an art.
DR. MICHAEL FIRST: Still an art, but it’s also an art in the rest of medicine, as well. I think anyone who’s ever had back pain or an ill-defined medical illness will see how similar the rest of medicine can be to psychiatry.
BROOKE GLADSTONE: Similar, but not the same. First concedes that the diagnoses of medical disorders rarely affect the culture as intensely as mental disorders do.
DR. MICHAEL FIRST: The DSM is an amalgam of social values and the science, and I think the decisions made by the people in the DSM have direct impact on everyone.
BROOKE GLADSTONE: That’s why this veteran of DSM-III and IV stands firmly with critics who are calling for even more public deliberations.
DR. MICHAEL FIRST: You want to see how did this group of individuals who are making these decisions come up with their decisions and, more importantly, you want to have advanced warning so that if a proposal starts pushing its way through, people are aware of what that proposal is and if they see a problem with it they'll write in and say, you know, you haven't considered this. It’s the interaction and the give and take with the entire both scientific community and the community at large which can produce the best DSM. That’s the, the big problem in not having full transparency. It really robs the book of very, very important input at the, at the earliest possible stages.
BROOKE GLADSTONE: What’s more, members of the DSM-V Task Force sign a contract pledging not to divulge any confidential information, defined as, quote, “all work product, unpublished manuscripts and drafts and other pre-publication material, group discussions, internal correspondence, information about the development process and any other written or unwritten information in any form that emanates from or relates to my work with the APA Task Force or Workgroup.” But the APA says the contract has nothing to do with transparency. Dr. Darrel Regier, vice-chair of the current DSM-V Task Force:
DR. DARREL REGIER: This particular section was written by the intellectual property attorneys, and their concerns were that individuals who have inside access to the entire process don't use this for personal gain. And, in fact, we've had quite a bit of input coming in from the general public. The general public actually doesn't get that involved, until it’s clear what the disorders are and what the impact might be.
[OVERTALK] But -
BROOKE GLADSTONE: That’s because they don't know what is under consideration.
DR. DARREL REGIER: Well [LAUGHS] I think that you've seen a number of presentations in the press of people speculating about what might be under consideration.
BROOKE GLADSTONE: Do you ever personally wonder that too much of the wide range of human behavior is being pathologized?
DR. DARREL REGIER: I worry about that a lot. And when I went into the field of psychiatric epidemiology, which is my research area, I was very concerned that in the 1950s there was a book out called Midtown Manhattan Study that identified something like 84 percent of folks in Manhattan as having a mental disorder.
[BROOKE LAUGHS] So, I've been concerned since that time of having something that is certainly much more credible. I think the DSM-III criteria enabled us to narrow down on what is really a disorder and what is within the normal range of human, you know, emotional expression.
BROOKE GLADSTONE: I think if you took the wide swath of depression disorders that are in the DSM and add them to the wide swath of anxiety disorders that are in the DSM, and throw in quite a few of the attention disorders that are in the DSM, you could easily find that 84 percent of New Yorkers have a mental disorder.
DR. DARREL REGIER: I don't think you can.
BROOKE GLADSTONE: Let's assume that the only goal of the DSM is to reduce the sum of human suffering. The APA has been asked to review conditions for inclusion in the book, like apathy disorder, Internet addiction and parental alienation disorder. Who among us cannot find ourselves somewhere in the DSM? Which prompts the question not how much suffering is too much – we know mental illness destroys lives – but how much suffering is too little? Psychiatry has lowered our threshold for pain and has raised the bar for normal. Maybe the expectation that there is a “normal” is the most insidious disorder of all.
BOBBY McFERRIN/SINGING: Here’s a little song I wrote. You might want to sing it note for note. Don’t Worry, Be Happy.