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Allen Frances

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DSM 5 Freezes Out Its Stakeholders

Posted: 02/21/2012 1:35 pm

Scary news. The Chair of the DSM 5 Task Force, Dr. David Kupfer, has indicated that 90 percent of the decisions on DSM 5 have already been made.

Why so scary? DSM 5 is the new revision of the psychiatric diagnosis manual, meant to become official in May 2013. It proposes a radical redefinition of the boundary between mental disorder and normality, greatly expanding the former at the expense of the latter. Understandably, this ambitious medicalization of the human condition has generated unprecedented opposition, both from the public and from mental heath professionals. To top it off, the DSM 5 proposals are poorly written, unreliable, and likely to cause the misdiagnosis and the excessive treatment of millions of people.

Under normal circumstances the DSM 5 team would have taken the many criticisms to heart, gone back to the drawing board, and improved the quality and acceptability of their product. After all, the customer is very often right. But this DSM process has been strangely secretive, unable to self-correct, and stubbornly closed to suggestions coming from outside. As a result, current DSM 5 proposals show very little improvement over poorly done first drafts posted in February 2010.

Is there any hope of a last-minute save? I have gathered opinions from three well-informed DSM 5 watchers. They were asked to assess the current state of DSM 5 and offer suggestions about future prospects. The first comment comes from Suzy Chapman, a public advocate, whose website provides the most comprehensive documentary source on the development of DSM 5 and ICD-11. Ms Chapman writes:

DSM 5 consistently misses every one of its deadlines and then fails to update its website with a new schedule. The Timeline was finally revised a couple of weeks ago, but we are still no nearer to a firm date for the final period of invited public comment. We've known since November that DSM 5 is stuffed as far as its planned January-February comment period and that Dr Kupfer now reckons "no later than May" -- but all the website says is "Spring." That's no use to those of us who need to alert patient groups and their professional advisers.

Given Dr Kupfer's statement that 90% of decisions have already been made, all of DSM 5 will probably be predetermined by "Spring" -- with or without input from the public or the field. I am disturbed by the timeline instability; the constant delays; the lack of meaningful response to previous public comment; and now the timing of a final round of public feedback only after decisions have already been made. All this suggests a DSM 5 that doesn't really care what stakeholders think; that feedback won't have any influence at this late stage and that requests for stakeholder participation are no more than purely ritual exercises in misleading public relations.

DSM 5 is clearly choosing to sacrifice meaningful stakeholder input in its mad scramble to meet an arbitrary publishing deadline. APA will most surely foist a second rate product on us. Its Vice Chair, Dr Regier, appears to be grasping at straws when he describes DSM 5 as a "living document," admitting that it offers incompletely tested "scientific hypotheses" but assuring us that these can always be patched, post publication.

This is entirely unacceptable. Patients and the public deserve much better -- we need a DSM 5 that can be trusted to be safe, scientifically sound and fit for purpose from the day it is published.

Dayle Jones, Ph.D. is chair of the task force monitoring DSM 5 for the American Counseling Association. She has become one of the most knowledgeable people on earth about DSM 5, and her views should carry particular weight with the American Psychiatric Association because the 120,000 licensed mental health counselors form one of the largest groups among DSM users. Dr. Jones has serious doubts that DSM 5 process can produce a credible and usable document. She writes:

The timetable for the DSM-5 field trials was unrealistic from the get go, deadlines were never met, and when time ran out, the most important part of the process was mysteriously cancelled. The DSM 5 academic/large clinic field trial was designed to have two phases. Phase 1 was originally scheduled to begin June 2009, but its start date had to be postponed for a year because the criteria sets were not ready, and then were postponed again and again and again (with no reasons given) -- so we enter 2012, with 90% of decisions made but still no reporting of field trial results.

And it gets much worse. Because it fell so far behind its own schedule, DSM 5 has abruptly dropped the second stage of field testing -- without public comment or justification. This was a catastrophic decision. Phase 2 was specifically designed to provide an opportunity for re-writing and retesting those diagnoses that failed Phase 1. Without Phase 2, poor quality diagnoses will necessarily be included in DSM 5. I believe strongly that DSM 5 should complete its field trials just as it was originally planned -- even if this means delaying publication.

The poor scientific foundation of the DSM 5 is of special concern because it will promote drastically increased prevalence rates, with over diagnoses leading to over treatment. In the absence of convincing data to support its radical changes, counselors may find themselves unable in good conscience to use DSM 5. We are guided by ethical standards that caution us against assessments that lack sufficient scientific foundation. Our ethical code also warns against the dangers of misdiagnosis and of pathologizing individuals or groups, as well as making a diagnosis that would cause harm to an individual.

If counselors distrust DSM 5 and believe that it is ethically questionable to use it, they can simply ignore it. DSM 5 is not mandatory for most clinicians, unless specifically required by their institutional settings. The International Classification of Diseases (ICD) meets all insurer-mandated and HIPAA coding requirements. If mental health professionals find that DSM 5 lacks credibility, they may choose to use the text and criteria of their DSM-IV's and turn to ICD-10-CM (available free online) for codes. Unless DSM 5 shapes up dramatically, I expect that many counselors and other mental health clinicians will wind up boycotting it.

Donna Rockwell, Psy.D. is a member of the group that organized a petition to reform DSM 5. Dr. Rockwell summarizes its purpose:

In October 2011, members of the Society for Humanistic Psychology, a division of the American Psychological Association, sent an Open Letter to the DSM 5 Task Force, asking for an independent scientific review of the most controversial and consequential DSM 5 suggestions. Posted online as a petition, this request has been signed by 11,000 mental health professionals and endorsed by 47 professional organizations representing hundreds of thousands of practitioners (included are the American Counseling Association, the British Psychological Society, 14 Divisions of the American Psychological Association, and the American Psychoanalytic Association). The petition expresses our alarm about the dangers of over diagnosis, over medication, and the lack of scientific foundation for so many of DSM 5's proposals.

The response from APA has been very disappointing. In a January 27, 2012 answer to our call for greater DSM-5 transparency and scientific rigor, its president, John Oldham, MD, wrote, "There is in fact no outside organization that has the capacity to replicate the range of expertise that DSM-5 has assembled over the past decade to review diagnostic criteria for mental disorders."

This misses the point. It is precisely the narrow range of DSM 5 expertise that stimulated our concern that it is insular, lacks scientific rigor, and is far out of touch with clinical reality. The controversial DSM 5 proposals need to be vetted independently and much more vigorously than they have been.

It seems that Dr. Oldham is unaware of the Cochrane Group, universally respected for its ability to conduct systematic and impartial reviews using the well-accepted standards of evidence-based medicine. The APA should contract with Cochrane to determine which of the DSM 5 suggestions can stand up to its scientific scrutiny. I can think of no other way to guarantee a scientifically sound and credible DSM 5. APA must also delay the publication of DSM 5 until it can produce a diagnostic manual that meets minimal standards of quality. This will require extensive rewriting of unreliable criteria sets and retesting them to ensure that they pass muster. As Dr. Jones suggests, DSM 5 must reverse its cancellation of Phase 2 of its field trial; this is a necessary fail-safe against including unreliable diagnostic criteria.

DSM 5 has two purposes -- public and private -- which (because of all the delays) are now placed in direct competition. Its public purpose is to provide an official classification of mental disorders that plays a crucial role in clinical communication, research, education, forensics, insurance reimbursement, disability determination, and FDA approval of drug indications. Its private purpose is to be a cash cow for the American Psychiatric Association -- a perennial bestseller of at least 100,000 copies a year, earning profits of at least $5 million a year. An APA that places its public trust first will delay publication of DSM 5 until it can be done right. An APA that protects profits first will prematurely rush a second- or third-rate product into print.

Let's see what happens.

Allen Frances is a professor emeritus at Duke University and was the chairman of the DSM-IV task force.

 
 
 
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03:21 PM on 03/06/2012
Will the sado-masochists finally diagnose themselves?
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HUFFPOST SUPER USER
Vajara
vajara
09:40 AM on 03/05/2012
Of course this labeling and drugging collaborative with psychiatry, psychology, big pharmas, big insurance and all of their related professional organizations and professional schools is a failed system.

The DSM has always been a false and dangerous system that prevents most vets from receiving help or treatment. PTSd is just one example of the great harm false labels cause our service members from receiving "health care" when they return from wars. These "injured warriors" don't wish to have such a sick care label put on their psyche for life and that is why it is reported that only about 20% of the service members are identified with serious injuries. Few are offered integrative health services for their injuries. The behavioral health system puts our injured warriors at risk by giving them such a false label or diagnosis and toxic drugs that reportedly are more dangerous and less effective than placebos. Some participants on this list continue to support a sick care industry that causes such great harm to their consumers--perhaps they can show us the evidence that these labels and drugs improve the quality of lives, health and relationships, especially our returning warriors and their families.
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HUFFPOST SUPER USER
C Karen Stopford
07:22 PM on 02/26/2012
Kupfer's reign has been one of secrecy and intimidation. I suspect he is being well-paid by the pharmaceutical companies. Psychiatrists have for the most part become little more than checklist-driven pill pushers, who without the DSM wouldn't know what to do.

Here's an interesting tidbit about this travesty dating back 2 1/2 years: http://psychcentral.com/blog/archives/2009/06/25/transparency-kupfer-and-the-dsm-v/
01:17 AM on 02/24/2012
The idea of a non-transparent group having so much power over so many people is disturbing.
03:48 AM on 02/24/2012
What kind of power do they have over you, exactly?

:-)
07:20 PM on 02/23/2012
Many of the proposed changes are quite disturbing and frankly it seems as though pharma may be benefitting. One change I known of now puts normal "grief" say from losing a loved one, to a timeframe of 2 weeks. 2 weeks for grieving a loss that used to extend to 6 months! Many people put normal grief from a loss at 2 years. I guess they want to classify anything past 2 weeks as depression so they can put people on anti-depressants.
Also, the proposed change of classification for children with autism means that 45% of children who are currently classified as having autism will no longer have that diagnosis. I guess we can blame the writers of the DSMV when certain crime or homelessness statistics increase which they certainly will. I mean that's a lot of kids who won't qualify for therapy that certainly helps them function optimally. This is an appalling abuse of power.
01:53 AM on 02/24/2012
Wait... so somebody who is grieving can not also be depressed? And even if they are depressed because they are grieving they can not be treated with medications that can help them to overcome this state faster?

Based on what science? Oh, wait, I can show you one medical opinion... the first CITATION that is to appear on this thread:

http://www.ncbi.nlm.nih.gov/pubmed/21284063

Complicated grief and related bereavement issues for DSM-5.
Shear MK et al. Depress Anxiety. 2011 Feb;28(2):103-17

I cite from the abstract:

"Bereavement is a severe stressor that typically incites painful and debilitating symptoms of acute grief that commonly progresses to restoration of a satisfactory, if changed, life. Normally, grief does not need clinical intervention. However, sometimes acute grief can gain a foothold and become a chronic debilitating condition called complicated grief. Moreover, the stress caused by bereavement, like other stressors, can increase the likelihood of onset or worsening of other physical or mental disorders. Hence, some bereaved people need to be diagnosed and treated. A clinician evaluating a bereaved person is at risk for both over-and under-diagnosis, either pathologizing a normal condition or neglecting to treat an impairing disorder. The authors of DSM IV focused primarily on the problem of over-diagnosis, and omitted complicated grief because of insufficient evidence."

Do you disagree with that? Then please CITE a medial authority which says otherwise.
01:56 AM on 02/24/2012
"Also, the proposed change of classification for children with autism means that 45% of children who are currently classified as having autism will no longer have that diagnosis."

So the DSM 5 is over-diagnosing grief... but it is under-diagnosing autism?

Interesting. Somebody likes to pick and chose to their own liking what they DSM should be doing...

Isn't that a little bit like armchair coaching?

No, it isn't. It is EXACTLY like armchair coaching.
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Fooly-Cooly
Those...eyebrows...
11:21 AM on 02/23/2012
Normal - by definition, is simply what 68% of a population are doing; that is:

If the vast majority of people are engaging in a certain behavior; then it is statistically considered "Normal." Conversely, the 32% are considered "Abnormal."

The problem is that too many are incorporating statistics in their determination for "Healthy" and "Unhealthy."
09:31 PM on 02/23/2012
In the realm of human psychology you will probably not even find 68% that do exactly the same thing the same way.

Not that the DSM actually works that way. It also does not categorise into "healthy" and "unhealthy". It does, however, ask the question if a person's mental responses to the environment create distress for that person (and in fewer cases, if they create distress for the person's environment). If that's the case, and only if that's the case, will it suggest treatment.

The "happy crazy" are of no concern to modern psychiatry, at least not to the part that uses criteria similar to those in the DSM.
02:03 AM on 02/23/2012
Do we have some citations, yet?

What, still not?

:-)
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HUFFPOST SUPER USER
Vajara
vajara
09:50 AM on 03/05/2012
Where are your citations for demonstrating that these drugs and labels improve the quality of life, health and relationships? Appears to me that you work for these sick assed behavioral health systems that don't change, improve or give a damn about their patients and their families. The average length of time for a psychiatric visit in a behavioral health clinic in the military is 7 minutes...just enough time to write a prescription and label our injured warriors with a disease or illness that is non-existent...war trauma produces a whole body, mind, spirit, emotion and social injury that requires health services, not drugs and labels.
01:33 PM on 03/06/2012
I believe that you do not understand everyone else’s point.
The burden of proof is on the people that put forth the new theory. This is a basic premise of the scientific method.
If I may give a simple example: If in 1950, prior to any of our missions to the moon, you came up with the theory that the moon was made of cheese, and you wanted this theory published in all the high school science books, It would be up to you to provide evidence to support your theory. It would not be the job of everyone else to prove you wrong (which nobody could for another decade)

Therefore if the APA wants to include ANYTHING in their DSM, there should be studies (more than one) that show that people do better that have the suggested treatment than those people that do not get the treatment. To suggest any course of treatment without SOME scientific evidence backing it, is not ethical. This is what so many people are concerned about.

Should the APA proceede with publishing a Diagnostic Manual that is not based on science, it will be in danger of loosing any respect, and the ICD will become the standard. If in fact you look at if from a legal standpoint, If the DSM is not based on science, is it anything more than a religion? And if a religion, the APA should return all money that the US government gave it to update it’s “Bible”
10:12 PM on 02/21/2012
"It proposes a radical redefinition of the boundary between mental disorder and normality, greatly expanding the former at the expense of the latter."

I am wondering how it does that... can you give us, at least, ONE EXAMPLE? With scientific citations, please.

Thank you!
04:35 PM on 02/21/2012
What? Still no scientific EVIDENCE against the DSM 5? How comes? Does it take too much effort to come up with ever new bogus arguments against it?

:-)
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06:01 PM on 02/23/2012
Still defending the scientific establishment status quo out-of-hand, I see.
01:45 AM on 02/24/2012
No. I am merely asking those who attack something to make their argument with data and not with unfounded accusations.

And what tells you that I believe in the current head of the DSM committee being any more or less scientific than the previous head of the DSM committee, Dr. Allen Frances?

The man basically attacks the very thing he used to do.

:-)