Boycott The DSM-5: Anachronistic Before Its Time

Jack Carney, DSW

December 10, 2012

When plans for the DSM-5 were first announced about ten years ago, most folks’ reaction was “Why?”. Many of us asked that same question several times as the publication date for the new tome kept on getting pushed back. Finally, the curtain enshrouding the DSM-5 Task Force and its several committees began to part and proposed revisions/additions began to appear on its website. To our dismay, we found our question answered.

The Task Force appeared intent on moving Kraepelin’s bar further along his mythical mental illness continuum by lowering most diagnostic thresholds and exposing more of us to being categorized with some disorder and probably being medicated. To great consternation, it removed the bereavement exclusion that historically has been applied to individuals’ grieving over the loss of a loved one. You can, of course, still grieve, but you now have only two weeks to do so. If you grieve for longer than two weeks and get depressed to boot, you are now eligible for categorization with a Major Depressive Disorder and will probably be prescribed an SSRI by a diligent primary care physician or any psychiatrist you happen to visit. The Task Force also tinkered with the diagnostic criteria for autism in children, raising the bar for that diagnosis, again to great consternation, and jeopardizing the insurance coverage for treatment already being received by kids diagnosed under DSM-IV criteria. Who knows what lofty goals the Task Force was aspiring to – rhetorical question – but it was proving adept at screwing up many individual’s day-to-day existence.

The Task Force also added a number of interesting diagnoses – for a complete listing, check out Suzy Chapman’s website; Ms. Chapman, located in the U.K., has been following 5’s winding path from day one. I’ll just mention one that she has begun raising a clamor about and that has so far flown under most observers’ radar. Somatic Symptom Disorder. I found out about it by reading one of Allen Frances’s recent posts, and he, in turn, had been alerted by Ms. Chapman. To quote from her recent post, “Somatic Symptom Disorder Could Capture Millions More Under Mental Health Diagnosis.”

“… the Somatic Symptom Disorders (SSD) work group [under the direction of its Chair, Joel Dimsdale] … is proposing to … eliminate four existing DSM-IV categories: somatization disorder, hypochondriasis, pain disorder and undifferentiated somatoform disorder and replace them with a single new category – ‘Somatic Symptom Disorder.’

“If approved, these proposals will license the application of a mental health diagnosis for all illnesses … if the clinician considers that the patient’s life has become ‘subsumed’ with health concerns and preoccupations, or their responses to distressing somatic symptoms is ‘excessive’ or ‘disproportionate’ or their coping strategies ‘maladaptive.’

[In short,] “ … the Work Group … proposes to … assign new criteria that will capture patients with diverse illnesses, expanding application of psychiatric services, antidpressants and behavioral therapies, like CBT, for the ‘modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors.’ ”

Talk about interfering in people’s daily lives! My wife and I both agreed that her late mother, whom we loved dearly, would have qualified for this diagnosis. Like most older folks, she was what we colloquially term a “worry wart”, constantly preoccupied with every new ache and pain. I’m only a few years away from that myself.

In an e-mail to Dr. Frances, which he quotes at length, Ms. Chapman summarizes her concerns as follows:

“The DSM-5 Work Group is taking a flying leap into the unknown. There are no published research data on the likely prevalence rates, clinical characteristics or treatment of ‘Somatic Symptom Disorder’ or its validity and safety as a construct … The DSM-5 field trials produced results that should have scared off the Work Group. One in six cancer and coronary disease patients meet the criteria for [the] … Disorder.

“To meet requirements for Somatization Disorder … in DSM-IV … the diagnostic threshold was set high – a total of eight or more medically unexplained symptoms from four specified symptom groups … In DSM-5, the requirement of eight symptoms is dropped to just one.

[Finally] “… Incautious, inept misapplication of these highly subjective and catch-all criteria will likely result in frequent inappropriate psychiatric diagnosis with far-reaching implications …”

Which description could be applied to the entire DSM-5. You should note that final wording of this and other sections of the new DSM is still being debated within the respective Work Groups. Some folks, particularly Dr. Frances, harbor the hope that the final product can be altered before publication. I encourage those of who you share his optimism and resolve to lobby the hell out of the APA with changes you believe need to be made.

If you need some comic relief after the foregoing, it should be provided by Ben Carey’s latest article on the DSM’s Personality Disorders debacle, “Thinking Clearly About Personality Disorders,” published in the “Science Times” section of The New York Times on November 27. I laughed out loud when I read his “keystone kops” characterization of the remaining members of the Personality Disorders (PD) workgroup tripping over their respective narcissisms as they tried to decide how to organize and present the Personality Disorders section in the new DSM. I’m not a great fan of “personality disorders” – or of any “disorders”, for that matter. I clearly remember that “personality disorder” diagnoses were invariably slapped on those of our case management clients who were considered “problematic” or “inappropriate”; in other words, “pains in the ass” for the practitioners who labeled them, a designation my staff and I disregarded. In practice, personality diagnoses are hard to make, requiring several hours of assessment, and, in my experience, of little value, since they appear to represent clinician bias rather than serve as guides to effective treatment. But that’s of course my bias.

In the final version, the PD workgroup jettisoned their dual categorical/dimensional model via which clinicians were to understand and diagnose personality disorders. Which no one could make any sense of, as evidenced by poor inter-rater reliability in field trials. Ultimately, the workgroup did what anyone faced with fourth and long would do — its members punted. As per the APA press release issued on December 1, when the APA Board gave its stamp of approval to the new DSM, “DSM-5 will maintain the categorical model and criteria for the 10 personality disorders included in the DSM IV and will include the new trait-specific methodology in a separate area of Section 3 to encourage further study …” In sum, no change.

And so we ask again – not a rhetorical question – why all the fuss and bother? Why a new DSM after all? By admission of its president, Dr. Dilip Jeste, the APA and its DSM-5 Task Force headed by David Kupfer failed to develop a new diagnostic paradigm that would render the biomedical model unassailable. Whatever lofty ambitions the APA and Kupfer might have had, Jeste essentially lowered the flag when he declared “We have sought to be very conservative in our approach to revising DSM-5.” He should have added “reckless” and “adrift in a bubble” of the Task Force’s own devising. More importantly, in a brief message printed in Psychiatric News on December 1, Jeste admitted “At present, most psychiatric disorders lack validated diagnostic biomarkers, and … psychiatric diagnoses are still mostly based on clinician assessment…” This was an admission he never would have had to make were it not for the outrage stirred among thousands of mental health stakeholders – psychiatrists in opposition, led by Allen Frances; other professionals, particularly clinical psychologists; psychiatric survivors; current service users; family members – against the biomedical model and against psychiatry itself consequent to the arrogance coupled with incompetence manifested by the APA and the DSM Task Force.

A stellar example of the reformist thinking stirred by this ten-year long adventure is the benchmark article just published in The British Journal of Psychiatry and co-authored by twenty-nine mental health practitioners in the U.K’s National Health Service. The lead author is Dr. Pat Bracken, a psychiatrist working in County Cork, Ireland. The authors begin by acknowledging that they are responding to a series of editorials in The BJP stating that “psychiatry is in the midst of a crisis.” They continue by noting that “…The various solutions proposed would all involve a strengthening of psychiatry’s identity as essentially ‘applied neuroscience’ …” The authors counter by arguing “…that psychiatry needs to move beyond the dominance of the current, technological paradigm” to what they term a “post-technological paradigm,” i.e., one not rooted in a neurobiological epistemology and psychopharmacological practice, but one that acknowledges the relationship between helper and person being helped as fundamental and relies on the discourse or narrative exchange that occurs between the two.

To quote the authors:

“Psychiatry is not neurology; it is not a medicine of the brain. Although mental health problems undoubtedly have a biological dimension, in their very nature they reach beyond the brain to involve social, cultural and psychological dimensions. These cannot always be grasped through the epistemology of biomedicine. The mental life of human is discursive in nature.

“… Reductionist models fail to grasp what is most important in terms of recovery … If we are to operate in an evidence-based manner and work collaboratively with all sections of the service user movement, we need a psychiatry that is intellectually and ethically adequate to deal with the sort of problems that present to it.

“… We are not seeking to replace one paradigm with another. A post-technological psychiatry will not abandon the tools of empirical science or reject medical and psychotherapeutic techniques but will start to position the ethical and hermeneutic [or interpretive] aspects of our work as primary, thereby highlighting the importance of examining values, relationships, politics and the ethical basis of care and caring.”

It’s not the revolution that some of us might like to see, i.e., the removal of psychiatry from its hegemonic position, but it does represent an attempt to restore a sense of morality to a profession that, before our eyes, has become morally bankrupt, an attempt to restore individuals to the front and center of helping and healing. As most of us well know, the revolution will not be televised and change will come incrementally and slowly. In my estimation, whatever advances the process of change is to be welcomed.

Which brings me back to the DSM. Don’t buy it, boycott it! In conversations I’ve had with mental health professionals here in NYC, with other social workers for the most part, as well as with provider agency administrators, there’s an operating assumption on the part of nearly all that the DSM is essential to their work. As I painstakingly remind those I speak with, diagnoses for billing purposes, their only practical use that I can think of, are to be found in the ICD (International Classification of Disease) 9-US manual. By international treaty, provider agencies and their funders, viz., the Center for Medicare and Medicaid Services (CMS) and private insurance companies, must use ICD codes for payment of services rendered. During the past 20 or so years, the DSM has become such a fixture in mental health practice that is regarded by nearly all practitioners as “The Bible” for assessment, treatment and billing. Wrong on all counts. The DSM serves only to reduce those functions to bits of data which can now be entered into computerized information systems. The ICD, too, is reductive; its codes are pretty well crosswalked with those of the DSM; but it can be used in lieu of the DSM. And as I wrote above — whatever advances the process of change is to be welcomed. Whatever puts a crimp in sales of the DSM and the flow of money into the APA’s coffers is to be pursued.

Since many of you might be unfamiliar with the ICD, just Google it, together with DSM. It appears that lots of other folks have the same idea I have, viz., doing without the new DSM, and are figuring out how best to employ the ICD as its substitute. You should know that the rest of the world has been using ICD-10 for the past 15 years or so. U.S. insurance companies and the U.S. government have been jockeying for the upper hand in determining when and how to implement ICD 10 for so long now that 10 might be replaced by 11 but not before 2014. Or so it seems. In any event, ICD 9 still works so use it.

Boycott the DSM-5! And don’t mourn, organize DSM boycott cells in your agency.

References:

American Psychiatric Association, “American Psychiatric Association Board of Trustees Approves DSM-5,” press release, December 1, 2012

Bracken, P. et al, “Psychiatry Beyond the Current Paradigm,” The British Journal of Psychiatry, December, 2012, Vol. 201, pp. 430-434, http://bjp.rcpsych.org

Carey, B., “Thinking Clearly About Personality Disorders,” The New York Times, November 27, 2012
Chapman, S., “Somatic Symptom Disorder Could Capture Millions More Under Mental Health Diagnosis,” http://dxrevisionwatch.com, shortlink to article: http://wp.me/pKrrB-29B

Frances, A., “DSM-5 is Guide Not Bible – Ignore Its Ten Worst Changes,” December 2, 2102, Psychology Today, http://www.psychologytoday.com/blog/dsm5

Frances, A., “Mislabeling Medical Illness as Mental Disorder,” December 8, 2102, Psychology Today, http://www.psychologytoday.com/blog/dsm5

Jeste, D., “A Message from APA President Dilip Jeste, M.D., on DSM-5,” December 1, 2012, Psychiatric News

Jack Carney, DSW

Up the River:  A social worker, Jack Carney writes on the contradictions and hypocrisies of the public mental health system and promotes and applauds acts of resistance to it. In the words of the immortal Joe Hill, just before he was executed by a Utah firing squad, he likes to advise:  “Don’t mourn, organize!”

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10 thoughts on “Boycott The DSM-5: Anachronistic Before Its Time

  1. I’m glad that Suzy Chapman and Allen Francis have called attention to the Somatoform Disorders…that was really flying under the radar…

    I made some comments regarding this particular issue today as well and wanted to share my concerns here too as I’ve not seen them mentioned elsewhere and they’re quite significant concerns for anyone who has been on psych meds for any length of time:

    The Somatic Symptom Disorder category is also of particular concern to those who are suffering from drug iatrogenesis and particularly psychiatric drug withdrawal syndromes. One of the common manifestations of debilitation when struck with withdrawal syndromes are numerous, often bizarre, acute, painful and disabling physical sensations. They include varieties of neuropathies and parasthesias. They are NOT in the patients head. And since the drug use caused these disabling symptoms more drugs to cure them is exactly the wrong way to go. This, of course, already happens. Many people are wrongly diagnosed when they start manifesting adverse reactions or acute withdrawal to drugs. They are often already disbelieved when they start reporting such adverse events.

    There is an ongoing failure to recognize the iatrogenic illness (medically induced physical illness) that these drugs actually cause very often, especially when people withdraw from them but often simply as a result of going on and off them as is routinely done in the treatment of those who are so-called “treatment resistant.” The med “merry-go-rounds” that so many people experience in psychiatric care are quite often the cause of what gets called treatment resistance. The body/mind doesn’t like having its nervous system repeatedly jacked around.

    The Somatic Symptom Disorder institutionalizes this dangerous failure to recognize the harm psych meds are causing.

  2. “During the past 20 or so years, the DSM has become such a fixture in mental health practice that is regarded by nearly all practitioners as “The Bible” for assessment, treatment and billing. Wrong on all counts. The DSM serves only to reduce those functions to bits of data which can now be entered into computerized information systems.”

    They don’t call it the bible for no reason.

    “Frances, A., “DSM-5 is Guide Not Bible – Ignore Its Ten Worst Changes,” December 2, 2102, Psychology Today, http://www.psychologytoday.com/blog/dsm5

    HMM. Seems to me that psychiatry doesn’t like their big book being mocked. I hope people mock it even *more* – especially in the interest of boycotting it.

  3. Jack, I completely agree with your assessment of DSM 5. In fact, I and many other members of the consumer/survivor movement are fed up with the whole diagnostic reductionism approach. The perpetuation of the medical model greatly depends upon the idea that life issues can be reduced to as diagnosis, like any other illness. That is ridiculous, as the BMJ article of Bracken et al point out.
    I agree we should mobilize all the critics of DSM 5 and begin a informational boycott of the APA leading to a boycott of the DSM 5. We could start by a boycott on the sale of all APA products. We could also critique the publications of the APA. We should point out that as long as the APA receives money from big pharma and any of the sale of its DSM products and publication of information about medications are a violation of conflict of interest ethical guideines.

  4. Glad you agree with the idea of a boycott, Dan. To get right to it, in what part of the country do you live and do you have a group of colleagues/friends that could organize a boycott and boycott-like activities — you mention an informational boycott? Let me know and let’s keep in touch. Best, Jack

  5. Jack, I live in Boston, hot bed of protest and also of conventional psychiatry. I run the NEC and we are connected to advocates all over the country and world. We should think, I believe of stages. The National Federation for the Blind just staged a boycott of Amazon for not making their Kindles accessible to blind students. I will see what their steps were and see if we can adapt. I think it would be helpful to get some statistics on the APA, such as how much of its budget comes from Pharma, how much money it makes on DSM sales.
    I am a great believer in Coalitions. I have reached out to the Humanistic Psychologists, and think we should reach out to Paula Kaplan and her protesters.
    First step might be to call a planning meeting by teleconference,the kind where everyone calling in pays.

  6. Dan, by all means, take the lead on this; I’ll be happy to follow and take on whatever tasks you suggest. You seem to have clear ideas on how to pursue this and I defer to your judgment.

    By the way, I probably will be up in the Boston area (up from NYC) — in Newton, to be precise — the end of January, beginning of February — 1/31-2/3. May be we could get together, however briefly, to talk about this face to face (how unusual). If you’re up for it, let me know when you might be free during that time period and let”s see what we can work out. Happy holidays for you and yours. Best, Jack.

  7. Jack,

    Just to shame the APA for making so much money and prevent, where we can, the DSM5 to do much harm on people having lost a loved one-or indeed several- one can distribute the free bereavement leaflet of the Royal College of Psychiatrists.

    I found it to be one of my best clinical tool as a psychiatrist(they offer it not only in English)and since Dr Alice Keys was kind enough not to despise this suggestion on her blog , I feel I might offer it to you and your audience as well:

    ///Updated May 2011. Due for review: May 2013. Royal College of Psychiatrists. This leaflet may be downloaded, printed out, photocopied and distributed free of charge as long as the Royal College of Psychiatrists is properly credited and no profit is gained from its use. Permission to reproduce it in any other way must be obtained from the Head of Publications. The College does not allow reposting of its leaflets on other sites, but allows them to be linked to directly.///

    http://www.rcpsych.ac.uk/expertadvice/problems/bereavement/bereavement.aspx

    NB: Let’s hope that the RCP do not feel like adapting their bereavement leaflet to the DSM 5 in May 2013 and beware that the ICD commitees are also electing diseases in a political way and some of those might have the scope to be compatible with the DSM 5.

    Anyway, this very useful leaflet is an example of a psychiatrists’ national association who doesn’t put financial profit first- they ask for a voluntary donation when you print it but it is not an obligation. Plus, when you give it to a person in acute mourning, you drastically lessen the risks for that person to become a psychiatrist or a psychologist ‘s client. On that point the RCP seems to do the opposite of the APA…

    PS: I am not as keen on every RCP leaflet as I am on that one.

  8. Thank you, Dr. Frances, and Ms. Chapman so much for pointing out the complete inappropriateness of the newly created “SSD.” Especially telling is the manner in which the work group has so far successfully attempted to steamroll this horrible code through despite all the extremely negative feedback they have gotten during the months and years of public comment. SSD MUST be taken out! I agree also with Dr. Frances in his blogpost, below, that inclusion in Axis V is the most appropriate solution.

    http://www.psychologytoday.com/blog/dsm5-in-distress/201212/mislabeling-medical-illness-mental-disorder/comments

    The working group members and other insurance lobbyists, trained as psychiatrists and posing as scientists, have done the same thing to ME, Gulf War Illness, Fibro, and other supposedly medically unexplained somatic syndromes: churned out fake science all aimed at denying payouts by insurers.

    Some of this fake science purports to show that patients will recover faster if diagnoses are withheld and are given CBT aimed at making them think they do not have a physical disease. In ME, this is paired with graded exercise, which is the most dangerous “treatment” for ME, since the hallmark of ME is that the disease WORSENS with EXERCISE.

    The introduction of “SSD” is just an extension of this m.o., seeking to lose these somatic diseases in the vast wastebasket of SSD, so insurers can avoid payouts.

    Of course, I agree that DSM-5 MUST be boycotted! Thank you for championing this great idea!

    One ray of hope is that apparently now as hoc revisions to DSM can be made without having to wait until DSM-6. Hopefully, APA can be made to see the wisdom of removing SSD ASAP.

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