THE BLOG

'Diagnosisgate' Deconstructed and Debunked

03/06/2015 06:03 pm ET | Updated May 06, 2015

Paula Caplan has been peculiarly furious at me for more than 20 years. The enduring chip on her shoulder first formed when I didn't take seriously her written proposal that 'Delusional Dominating Personality Disorder' be considered for DSM IV. I honestly thought she had submitted 'DDPD' as a clever satire intended to illustrate how silly DSM diagnoses can sometimes be -- it made no sense to me in any other way. I misunderstood. Dr. Caplan was serious in suggesting 'DDPD' for inclusion in DSM IV and was understandably offended when I took it as a joke.

Realizing my error, I apologized to Dr. Caplan, but she has apparently continued to feel offended ever since. She has repeatedly written a distorted, self-dramatizing version of the event, greatly exaggerating her role in the DSM IV process (which was minimal) and posing as an expert on the flaws in psychiatric diagnosis (which she is not).

Now in her usual dramatic and distorted way, Dr. Caplan feels she can score points and gain public attention by exposing a supposed, creatively named, "Diagnosisgate."

Dr. Caplan, as always, is careless with facts, quick with misinterpretations, and filled with wild accusations. I will first debunk what is simple nonsense in her claims and then discuss the issues that do have a factual basis.

It is nonsense to state that my participation in guideline development was in any way a conflict of interest with DSM IV or affected in any way its preparation. The guideline project occurred several years after DSM IV was already in print. The term 'Diagnosisgate' is no more than Dr Caplan's misleading attempt to attract an audience and has no connection to reality.

It is nonsense for Dr. Caplan to claim there was "data distortion" in either DSM IV or in the guidelines. Both efforts were the result of completely transparent and forthright processes. Both efforts had very clear and published methodological rules of the road that were conscientiously followed every step of the way. Twenty years after the fact, I do see some things differently and would certainly do some things differently, but Dr. Caplan's claims of data distortion are simply wrong, completely unfounded, and represent her typical shooting blindly and irresponsibly from the hip.

It is nonsense to imply that I made a great deal of money from DSM IV sales, which Dr. Caplan states totalled $100 million. I don't know the sales figures so can't judge the accuracy of this estimate. I do know that my personal financial return from the work on DSM IV was halftime salary for seven years, about sixty-thousand per year, and for work on two DSM IV related books was about ten thousand dollars per year. Given the amount of work involved, this was certainly not at all out of line.

It is nonsense to say that our survey data in the guideline were "misrepresented on a massive scale." Had Dr. Caplan been careful enough to actually read the guideline she was criticizing, she would know that the raw data were presented in full and that a pre-established statistical algorhythm translated survey results into guideline recommendations. There was no "misrepresentation" of results on any scale because the data were presented and spoke for themselves. There were no after the fact statistical reanalyses or decisions made beyond what jumped off the graphs. Unlike many reports in the literature, there could be no fudging of results. Dr. Caplan's claim is fantasy pulled out of thin air.

It is nonsense to say that: "This sequence of events tragically affects vast numbers of people.... So many people whose lives were harmed because of being psychiatrically labeled, given psychiatric drugs that had adverse effects, or both could have been spared enormous suffering if they had known this story."

Dr. Caplan seems to believe that no one should ever receive a psychiatric diagnosis using DSM and that no one should ever be treated with atypical antipsychotics. In her self serving view, diagnosis and treatment are both inherently harmful and she is some sort of Joan of Arc riding to the rescue of patients otherwise likely to be hurt by psychiatrists. This would just be silly, if it weren't harmful to the people who do desperately need help. We now have more than 300,000 severely ill psychiatric patients inappropriately imprisoned, and a like number who are homeless, because treatment and housing are not available. It is easy to find flaws with DSM IV and even more to find flaws with DSM 5. Having intimate knowledge of both systems, I probably know these flaws better than anyone and have worked very hard to correct and expose them. DSM IV failed to prevent over-diagnosis; DSM 5 actively encouraged it. But Dr. Caplan's misinformed, shot-gun criticisms may do a grave disservice if they scare off those who need and benefit from psychiatric diagnosis and treatment.

A typical illustration of Dr. Caplan's self-dramatizing is her claim to be identifying "probably the most stunning story of corruption in the history of the modern mental-health system." This is not just wrong, it is patently ridiculous- there was no corruption whatever in the preparation of DSM IV or the guideline.

Dr. Caplan admits that: "One editor after another of both general publications and scholarly journals fled from publishing the story.... Mysteriously, it has been kept out of major media for two decades." I don't think there is any mystery here. I have no idea where Dr. Caplan submitted her 'story' or which editors rejected it or their motives. But my guess is that the numerous rejections of her outlandish claims resulted from their absurdity and this is just not as much of a story as Dr. Caplan would like it to be. She enjoys being the center of controversy and will always do her best to stir a tempest in a thimble.

Now to the facts that are not nonsense. The schizophrenia guidelines were done with industry industry funding and I and others were paid well for doing them. We had developed a method of statistically aggregating the opinions of a large sample of experts to reduce the bias and lack of transparency inherent in any small group decision making. At the time, I was proud of the method and of the guidelines it produced. They were carefully and honestly done, useful, and the best advice then available. In its early days, Risperidone seemed to be a vast improvement over the older antipsychotics, which had awful side effects and were really terrible for patients to have to take. The new meds exhibited far fewer side effects and achieved much greater level of patient acceptance.

But in retrospect, there are two things about the project I much regret. Firstly, it was very unwise to do guidelines with drug industry funding. Even though they were fairly done, accurately reported, and contained built in methodological protections against industry-favorable bias, the industry sponsorship by itself created an understandable appearance of possible bias that might reduce faith in the sound advice and useful method contained in them. It was an error in judgment on my part that I apologize for. I have learned from my mistake and hope others do as well.

Secondly, I did not at the time anticipate, nor did the experts, that the atypical antipsychotics would be so frequent a cause of obesity and of the serious complications that follow from it. The considerable risks involved in using these new medications, and ways of avoiding these, were then unknown and not covered in the guideline. I also did not then anticipate that the atypical antipsychotics would eventually be so overused for problems outside their purview. The risk/benefit ratio makes them suitable only for narrow indications.

I have repeatedly in blogs, tweets, books, and talks done my best to point out that antipsychotics should be prescribed only when essential and have repeatedly pointed out their harms and risks. In fact, I left retirement specifically because DSM 5 intended to include a 'pre-psychotic' syndrome that would have been a target for increased misuse of antipsychotics. Fortunately, this was later eliminated from the final version of DSM 5. The atypical antipsychotics are essential medicines for the few that have been greatly overused for the many. We must continue the fight to contain their misuse, but not as Dr. Caplan does, imply that they are always harmful, never useful.

I never responded to Dr. Caplan's previous repeated attempts at provocation because, however groundless, her claims seemed harmless enough and unlikely to be taken seriously. I respond now to her latest attempt to be provocative because it goes beyond her personal pique and presents a misleading condemnation of psychiatric diagnosis and treatment that may discourage people from getting help they need.

Psychiatric diagnosis and treatment are useful (often essential) when used well, harmful when used badly. We must not, in a wholesale and reckless way, throw out psychiatric diagnosis and treatment, but rather restrict them to their appropriate uses. I will continue to fight against over-diagnosis and over-treatment, but also fight against the neglect of those who need both. I hope that people who need help will not be discouraged by Dr. Caplan's dramatics and distortions. There are many serious critics of psychiatric diagnosis and psychiatric treatment, including me, but Dr. Caplan is not among them.