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Consumer groups oppose the bill, saying it would weaken FDA oversight of new drugs and medical devices, allowing more drugs and devices on the market without adequate testing of their safety and effectiveness. It would also eliminate a restriction on the FDA’s use of advisory scientists with financial conflicts of interest, which had been imposed in the last FDA user-fee authorization bill Congress passed in 2007.

The Senate could pass the bill as early as next week, says Dr. Michael Carome, deputy director of Public Citizen’s Health Research Group, one of the consumer groups objecting to the bill, which made it through the House Energy and Commerce Committee last week.

The bill, as Public Citizen argues here, gives companies working on drugs for life-threatening conditions an easier pathway to approval by allowing them to use smaller studies and postpone definitive clinical trials proving effectiveness until after the drug hits the market.  Instead of being required to use end points that show the drugs are effective against the actual disease, the drug companies are allowed to use surrogate end points or markers and much smaller clinical trials to gain FDA approval. Carome argues that this will only increase the number of unsafe and ineffective drugs on the market.

The bill also eliminates a new clinical trial requirement for medical devices that are considered “follow-on” devices. Yet this requirement was imposed precisely because, as gooznews reports, the industry has been plagued in recent years by the recalls of follow-on devices such as metal-on-metal artificial hips and implanted cardio-defibrillators.

Carome tells gooznews that the industry heavily lobbied both sides of Congress to get provisions favorable to industry inserted into the new user-fee bill. And indeed both the Pharmaceutical Research and Manufacturers of America and the Advanced Medical Technology Association, which represents medical device companies, praised the bill in press releases last week.

What all of this reminds me of is the banking industry, which was busy lobbying the feds to weaken restrictions on risky trading activities even as JP Morgan Chase dove off the cliff with a risky bet on credit derivatives and lost at least $2 billion.

What’s at stake here is not just our money (JP Morgan was gambling with its own customers’ money), but the health and well-being of American citizens. Do we have to wait for another drug-related debacle (think Vioxx or Avandia or antidepressants that caused hundreds of suicides), before Congress wakes up and stops weakening the FDA’s ability to protect us?

This blog was originally posted at alison-bass.com.

Abstract →

Abstract →

The logic behind outpatient commitment laws is that antipsychotic medication is a necessary good for people with a diagnosis of severe mental illness. The medications are known to be helpful, but—or so the argument goes—people with “severe mental illness” lack insight into their disease and this is why they reject the medication.

However, if the history of science presented in Anatomy of an Epidemic is correct, antipsychotic medications, over the long term, worsen long-term outcomes in the aggregate, and thus a person refusing to take antipsychotic medications may, in fact, have good medical reason for doing so. And if that is so, the logic for forced treatment collapses.

We need to go over Torrey’s review, step by step. This may be a bit exhausting, but since his critical review can ultimately be seen as a defense of his advocacy of forced treatment, I think it will be worthwhile. In the end, we will be able to judge whether his is an honest review, or dishonest in kind, and if it is the latter, that—by itself—will reveal much about the scientific merits of outpatient commitment laws.

Part One: Diagnostic Criteria and Schizophrenia Outcomes

In my foreword to Anatomy of an Epidemic, I told of how, when co-writing a series for the Boston Globe in 1998 on abuses of psychiatric patients in research settings, I stumbled upon two outcome studies that I found difficult to understand.  Dr. Torrey opens his review by setting out to show that my curiosity about those studies was misplaced, and that my subsequent reporting on those studies was in error.

The first such study was by Harvard researchers, who reported in 1994 that outcomes for schizophrenia patients had worsened during the past two decades and were now no better than they had been a century earlier. This outcome belied what I understood to be true at that time, which was that psychiatry had made great progress in treating schizophrenia.

This is the only context for my citing this study in Anatomy of an Epidemic, as a finding that piqued my curiosity. I do not mention the study again in the book, and thus do not cite it in the chapter examining the evidence base for antipsychotics. However, Dr. Torrey claims that I do, writing that after I summarized the findings from this study in the preface, I “later added that the worsened outcomes (in recent decades) were due to the use of antipsychotic drugs.”

Since Dr. Torrey has focused attention on this study, let’s look at what the researchers found and their discussion of their findings.

In a survey of outcome studies over the past century, which were conducted around the world, the researchers reported that from 1895 to 1955, 35.4% of schizophrenia patients “improved;” that this improvement rate increased from 1956 to the 1970s to 48.5%; and then it declined. They concluded that since 1986 the “likelihood of a favorable outcome has diminished to only 36.4%, or a level that is statistically indistinguishable from that found in the first half of the century.”

In their discussion, the researchers reasoned that improved outcomes in the middle part of the century were due to both a change in diagnostic criteria that broadened the definition to include patients who were less ill at disease onset and then to the introduction of neuroleptics. They attribute the decline in outcomes, which began to show up in the late 1970s, to a decline in social services and, starting in 1980 with the publication of DSM-III, a narrowing of the diagnostic criteria for schizophrenia.

So the study has two parts: One tells of how outcomes have deteriorated  in recent times, and are now no better than they were in the first half of the 20^th century, before the arrival of antipsychotics, which seems to belie the common wisdom that the arrival of the drugs “revolutionized” the treatment of schizophrenia. At the same time, in their discussion, the researcher write that that neuroleptics helped improve outcomes, at least when they were first introduced.

As I wrote above, I mentioned this study in my foreword to explain how I got interested in this subject. The deterioration in modern outcomes, such that they were now no better than in the pre-antipsychotic era, surprised me. But I didn’t discuss this study at any length, precisely because I don’t think it provides evidence regarding the long-term efficacy of neuroleptics, one way or another.

However, there is a non-drug explanation for the improvement of outcomes in the 1950s. In the first half of the century, up until the end of World War II, eugenic attitudes toward the mentally ill in the United States, which were also seen in Britain and other European countries, dramatically affected the outcomes of people hospitalized with a diagnosis of schizophrenia. Eugenicists argued that people with schizophrenia were genetically defective, and thus they needed to be segregated from the population—i.e. kept in mental hospitals—to keep them from breeding. This idea began to take hold in the late 1890s, and once it did, discharge rates plunged. Those low discharge rates in the eugenics era would be seen as evidence that patients didn’t improve, and thus the low improvement rate up until 1945 was in large part due to this social policy.

After World War II, eugenics came to be associated with Nazi Germany and the “science” that led to the Holocaust, and thus seen as a discredited, even shameful science. The need to keep schizophrenia patients in mental hospitals for eugenic reasons began to evaporate, and that led, in the wake of World War II, to new discussions within psychiatry and our society about providing care to patients in the community. Discharge rates for first-episode schizophrenia patients immediately began to climb. For instance, a study of first-episode psychotic patients admitted to Warren State Hospital in Pennsylvania from 1946 to 1950 found that 62 percent were discharged within 12 months, and that by the end of three years, 73% were living out of the hospital. Similarly, a study of 216 schizophrenia patients admitted to Delaware State Hospital from 1948 to 1950 found that six years later, 70% were successfully living in the community. These are very high “improvement” rates, and they predate the arrival of the first antipsychotic, Thorazine, in asylum medicine.

Moreover, once Thorazine was introduced in the mid 1950s, there was one large study that looked at how the new antipsychotics affected discharge rates for first-episode patients, and it did not find that the drugs were helpful in this regard. In 1961, the California Department of Mental Hygiene reported on the discharge rates for 1,413 first-episode schizophrenia patients hospitalized in 1956, and it found that 88% of those who weren’t prescribed a neuroleptics—about half of the 1,413 patients—were discharged within 18 months. Those treated with a neuroleptic had a lower discharge rate; only 74 percent were discharged within 18 months.

Thus, if we look closely at changing discharge rates during the middle part of the century, we see that they rose for first-episode patients following World War II, when eugenic attitudes became discredited, and that the arrival of neuroleptics in asylum medicine did not increase this rate. This change in social attitude, along with broadened diagnostic criteria, is what led to the improvement in outcomes following World War II. This change in social attitude grew in the 1950s and 1960s. Deinstitutionalization, as a social policy, took hold and that led to improved discharge rates in those decades.

As anyone can see, the study does raise a question. Why are outcomes today no better than they were in the first half of the century? Doesn’t this finding belie the common wisdom that antipsychotics kicked off a psychopharmacological revolution, a great advance in care. This was a study that understandably piqued my curiosity, which is how I presented it in my book, and yet Dr. Torrey, eager to discredit Anatomy of an Epidemic, states that I cited it as evidence that antipsychotics worsen long-term outcomes.

Call this dishonesty moment number one in his review.

Next, in my foreword to to Anatomy of an Epidemic, I also wrote of how my curiosity about the merits of our drug-based paradigm of care was triggered by studies conducted by the World Health Organization, which twice found that outcomes in three developing countries, India, Columbia, and Nigeria were “considerably better” than in the United States and other developed countries. That also seemed odd—why should outcomes in poor countries like India and Nigeria be better than in the U.S. and other rich countries?

In Anatomy of an Epidemic, I then reported on the WHO findings in the chapter on antipsychotics. This, I noted, was data from a cross-cultural study, in which medication use varied. I presented the WHO data as one piece in a larger body of evidence regarding the long-term merits of antipsychotics.

Here are the findings from the WHO study that included, as part of its reporting on outcomes, the patients’ use of antipsychotics.

• Outcomes were best in the three developing countries, where only 16% of patients were regularly maintained on antipsychotics (versus 61% of patients in the developed countries.)

• The best outcomes of all were seen in Agra, India, where only 3% of patients were maintained on the drugs. The worse outcomes of all—in terms of the highest percentage of patients who were constantly ill—were reported in Moscow, and it was there that medication usage was highest.

• In a 1997 followup (15 to 25 years after the initial study), the patients in the developing countries were still faring much better. “The outcome differential” held up for “general clinical state, symptomatology, disability, and social functioning,” the researchers noted.

In his review, Dr. Torrey seeks to discredit this finding. First, he notes that he and others have argued that the difference in outcomes was due to a difference in the type of schizophrenia suffered by people in the developing countries. Second, and this is more important, he implies that the authors of the WHO studies, in response to such criticism, in 2008 backed away from their initial findings.

The WHO authors, he says, wrote that “we do not argue that the prognosis of schizophrenia in developing countries is groupwise uniformly milder.” The WHO investigators admitted, he says, that “the proportions of continuous unremitting illness . . . did not different significantly across the two types [developed and developing) of settings.”

When you read that sentence, you are led to understand that the authors of the WHO study no longer believe that outcomes in the developing countries were truly better. It seems that they now agree with their critics, which is that the better outcomes were an artifact of diagnostic differences. If that is true, it would mean that this cross-cultural study should not be seen as an instance in which patients, who were treated in settings where antipsychotics were less frequently used, had better outcomes. That is how I presented the study, and so if the researchers did indeed conclude what Dr. Torrey said they did, my presentation of that study would be in error.

So let’s look at what the authors, Jablensky and Sartorius, actually wrote in their 2008 article.

There were two WHO studies that compared outcomes in developing and developed countries, they noted. The first was known as the WHO International Pilot Study of schizophrenia, which found “markedly better outcomes of schizophrenia patients in India and Nigeria at 2-year and 5-year follow-ups.” However, at that time, the researchers concluded that the divergent outcomes—in this first study—might be the result of a difference in patient groups. Thus, they mounted a rigorous second study, known as the DOSMeD study, to investigate that possibility. This study followed all new onset cases of psychosis within a geographical area for two years.

In 1992, the WHO investigators reported their findings, and as part of their report, they divided patients into schizophrenia subtypes and compared outcomes in the subgroups. But it didn’t matter. No matter how the data were cut ande sliced, outcomes in the developing countries were much better. “The findings of a better outcome in developing countries was confirmed,” they wrote.

Now, in their recent 2008 paper,  Sartorius and Jablensky,  rather than back away from their 1992 findings,  vigorously defended them.

They noted the following results from the DOSMeD study:

• High rates of complete clinical remission were significantly more common in developing country areas (37%) than in developed countries (15.5%).

• Patients in developing countries experienced significantly longer periods of unimpaired functioning in the community, although only 16% of them were on continuous antipsychotic medications (compared with 61% in the developed countries.)

• In the study, one of the best predictors of outcome was “type of setting (developed vs. developing country.)”

• Elevated rates of early death (standardized mortality ratios) are more common in developed countries than developing ones.

So, where did Torrey’s misleading quote come from? In their 2008 report, Sartorius and Jablensky did observe that the percentage of patients with a “continuous unremitting illness” in the poor countries was 11.1 %, which was not significantly less than the percentage with this course in the rich countries (17.4%). In other words, there was a small percentage of patients in both settings that had a very bad course, but this did not reflect overall outcomes.

Dr. Torrey, in his review, was intent on discrediting the findings from this WHO study, which reported superior outcomes in poor countries where only a small percentage of patients were regularly maintained on antipsychotics. To do so, he implied that the WHO investigators now agreed with the critics of the study, when that is not true.

Call this dishonesty moment number two in his review.

Part Two:  Schizophrenia Outcomes and Medication

In this part of his review, Dr. Torrey takes aim at two longer-term studies (Courtenay Harding’s and Martin Harrow’s) and my reporting on those studies. He also takes aim at  the results reported for patients treated with open-dialogue therapy in Western Lapland, Finland, and my reporting of that program.

Courtenay Harding’s Vermont Longitudinal Study

I wrote one paragraph on this study in Anatomy of an Epidemic. Here it is:

In the late 1950s and early 1960s, Vermont State Hospital discharged 269 chronic schizophrenics, most of whom were middle-aged, into the community. Twenty years later, Courtenay Harding interviewed 168 patients from this cohort (those who were still alive), and found that 34 percent were recovered, which meant they were “asymptomatic and living independently, had close relationships, were employed or otherwise productive citizens, were able to care for themselves and led full lives in general.” This was a startling good outcome for patients who had been seen as hopeless in the 1950s, and those who had recovered, Harding told the APA Monitor, had one thing in common: They all “had long since stopped taking medications.” She concluded that it was a “myth” that schizophrenia patients “must be on medications all their lives,” and that, in fact, “it may be a small percentage who need medication indefinitely.”

Now here is what Dr. Torrey writes. “As Whitaker describes it . . . ‘34 percent were recovered’ which he claims is a ‘startling good outcome.’ Whitaker attributes this outcome (emphasis added) to the fact that ‘they had all long since stopped taking their medications.’ ”

We can call this dishonesty moment number three in his review. I did not attribute the 34% recovery rate to the fact that they had “all long since stopped taking their medications,” as that would indicate that I had drawn that conclusion. Instead, I repeated what Dr. Harding had said in an interview with the APA Monitor about the recovered patients. Equally revealing is what he omits from his discussion of Dr. Harding’s study: he does not mention her conclusion that the conventional wisdom regarding the need for schizophrenia patients to stay on antipsychotics all their life is a “myth.”

Martin Harrow’s Longitudinal Study

As Dr. Torrey correctly notes (for once), I do consider Martin Harrow’s report on the long-term outcomes of people diagnosed with schizophrenia and milder psychotic disorders to be of great importance. His was a prospective study of 200 psychotic patients, whom he followed for 20 years, and it is the only such study in the scientific literature.

Dr. Torrey dismisses the study as “completely unremarkable,” and so let’s take a close look at it to see if that is a fair assessment of his findings.

In the study, everyone was treated conventionally in the hospital with antipsychotics and then discharged.  Harrow then periodically assessed how they were doing over the next 20 years. At each followup, he looked at whether they were symptomatic, whether they were working, and a variety of other outcome measures. He also charted their use of antipsychotics and other psychiatric medications. At the end of 15 years, he still had 145 patients in his study (64 with schizophrenia and 81 with milder disorders. In one of his article, he also reported outcomes for a schizophrenia-spectrum group, which included the schizophrenia patients and a few others with schizoaffective disorder.)

Here is a summary of Harrow’s findings, taken from both his 2007 report on their 15-year outcomes, and  his 2012 report on their 20-year outcomes. (See slides for a graphic presentation of this data.)

1. Recovery rates in the schizophrenia group

At the end of two years, the schizophrenia patients who had stopped taking antipsychotics were doing slightly better on a “global assessment scale” than those taking an antipsychotic. Then, over the next 30 months, the collective fates of the two groups began to dramatically diverge. The off-med group began to improve significantly, and by the end of 4.5 years, 39% were in recovery. In contrast, outcomes for the medicated group worsened during this 30-month period. As a group, their global functioning declined slightly, and at the 4.5-year mark, only six percent were in recovery, and few were working.

That stark divergence in outcomes remained for the next ten years. At the 15-year followup, 40 percent of the schizophrenia patients off antipsychotics (25 of the 64 patients) were in recovery, compared to five percent of those taking antipsychotics. (To be in recovery, a person had to have no positive or negative symptoms; couldn’t have been hospitalized in the previous year; and adequate work and social functioning.)

2. Spectrum of outcomes in the schizophrenia group

Harrow divided long-term outcomes for the 64 schizophrenia patients into three categories: recovered, fair, and uniformly poor. Of the 25 patients who stopped taking antipsychotics, 10 recovered (40%), 11 had fair outcomes (44%), and 4 (16%) had uniformly poor outcomes. In contrast, only 2 of the 39 patients who stayed on antipsychotics recovered (5%); 18 had fair outcomes (46%), and 19 (49%) had uniformly pair outcomes. In sum, medicated patients had one-eighth the recovery rate of unmedicated patients, and a threefold higher rate of faring miserably over the long term.

3. Global outcomes for schizophrenia patients by prognostic type.

At the start of the study, Harrow grouped his schizophrenia patients into two subgroups: those with a good prognosis and those with a bad prognosis. Although he didn’t provide the global data for these two subtypes, he did report this finding: “In addition, global outcome for the group of patients with schizophrenia who were on antipsychotics were compared with the off-medication schizophrenia patients with similar prognostic status. Starting with the 4.5-year followup and extending to the 15-year follow-up, the off-medication subgroup tended to show better global outcomes at each follow-up.”

In other words, in every subgroup of patients (by prognostic type), those off medication had better long-term outcomes (in the aggregate).

4. Psychotic symptoms in the schizophrenia-spectrum and schizophrenia-only group

At the two-year follow-up, about 35% of the “schizophrenia spectrum” group were off antipsychotics, and that percentage remained fairly stable throughout the next 15 years. There was no significant differences in severity of psychotic symptoms between the on-med and off-med groups at two years, but starting with the 4.5-year followup and continuing through year 20, those “who were not on antipsychotic medications were significantly less psychotic than those on antipsychotics.

Among the schizophrenia patients, at the 10-year follow-up, 23% off antipsychotics were experiencing psychotic symptoms, versus 79% of those still on the drugs. At the 15-year followup, 28% of those off antipsychotics had psychotic symptoms, versus 64% of those on the medications.

5. Anxiety symptoms in the schizophrenia-spectrum group

At the two-year followup, about 50% of those on antipsychotics and a similar percentage of those off medications were experiencing “high anxiety.” However, over the next 30 months, high anxiety symptoms soared in the on-antipsychotics group, such that nearly 75% were experiencing this distress by year 4.5, whereas anxiety markedly declined for those off antipsychotics, such that only about 20% were experiencing this distress by year 4.5.  This dramatic difference in anxiety symptoms remained throughout the study, with more than half of those on antipsychotics still suffering from high anxiety at the end of 20 years.

6. Cognitive function in the schizophrenia-spectrum group

The researchers assessed cognitive function at each followup, with one test assessing ability to access general information, and the other abstract thinking. At three of the six follow-ups, those off antipsychotics showed significantly better cognitive functioning, and in the other three follow-ups, there was a general trend favoring those off antipsychotics.

7. Sustained periods of recovery in the schizophrenia-spectrum group.

Of the 24 schizophrenia patients who remained continuously on antipsychotics throughout the 20 years, only 4 (17%) “ever entered into a period meeting the operational definition of recovery during any of the six follow-ups.” The reasons they failed to do so was either because they were psychotic or not working, Harrow noted. In contrast, there were 15 in the group of 70 who were off antipsychotics by the two-year follow-up and remained off the drugs throughout the remaining 18 years. Thirteen of these 15 patients (87%) “experienced two or more periods of recovery,” which meant they were both asymptomatic and working more than 50% of the time.

8. Global outcomes of all 145 patients

Harrow provided global adjustment data for all four groups in his study: schizophrenia on meds, schizophrenia off psychiatric medications, milder disorders on psychiatric meds, milder disorders off. At the end of 15 years, the global outcomes for the four groups lined up like this, from best to worst: Milder disorders off meds, schizophrenia off meds, milder disorders on meds, and schizophrenia on meds.

As could be expected, Dr. Torrey does not report of any of these outcomes in detail. I’ll let readers of this blog decide whether such findings are—as Dr. Torrey writes— “completely unremarkable.”

In his discussion of the Harrow study, Dr. Torrey also makes this claim:  “Whitaker . . . using tortured logic, asserts that the Harrow study proves that long-term antipsychotic use causes brain damage and is responsible for many of the symptoms of schizophrenia, when in fact the study does nothing of the kind.”

Here is my challenge to Dr. Torrey. I wrote about the Harrow study on pages 115 to 118 of Anatomy of An Epidemic.  He should point to the passage on those pages where I asserted that the Harrow study “proves that long-term antipsychotic use causes brain damage and is responsible for many of the symptoms of schizophrenia.” If he can not point to such an assertion, then he should print this correction on his Treatment for Advocacy web page: “I lied about what Robert Whitaker wrote about the Harrow study.” He could then explain to his readers why he felt motivated to lie in this way.

But for our purposes, we can chalk this up as dishonesty moment number four in his review.

The Open Dialogue Program in Finland

In the solutions section of Anatomy of an Epidemic, I wrote about the good outcomes for psychotic patients in Western Lapland, a region in Finland, that—since 1992—has used antipsychotic drugs in a selective manner. Two-thirds of their first-episode patients have not been exposed to antipsychotics five years after initial diagnosis, and 80% are either working or back in school. These are extraordinarily good results, but Dr. Torrey dismisses them out of hand: “Most revealing and remarkable, however, is the fact that more than 40 years after the treatment program began, there are almost no publications describing its results and nobody in Finland or elsewhere has tried to replicate it. Robert Whitaker appears to be the person most impressed by it.

If Dr. Torrey had checked the notes section of my book, he would have found a number of citations documenting the good outcomes in Western Lapland since 1992, when that district began using antipsychotics in a selective manner. Here are five such published reports, and if Dr. Torrey likes, I can point him to others:

1. V. Lehtinen, “Two-year outcome in first-episode psychosis treated according to an integrated model,” European Psychiatry 15 (2000):312-20.

2. J. Seikkula. “Five year experience of first-episode non-affective psychosis in open-dialogue approach,” Psychotherapy Research 16 (2006): 214-28.

3. J. Seikkula. “A two-year follow-up on open dialogue treatment in first episode psychosis,” Society of Clinical Psychology 10 (2000):20-29.

4. J. Seikkula. “Open dialogue, good and poor outcome,” J of Constructivist Psychology 14 (2002):267-86.

5. J. Seikkula. “Open dialogue approach: treatment principles and preliminary results of a two-year follow-up on first episode schizophrenia.” Ethical Human Sciences Services 5 (2003):163-82.

There are also now groups in the United States and elsewhere seeking to "replicate" the open-dialogue model, and if Dr. Torrey likes, I could point him to a conference that will be held in Finland in late August devoted to this topic. Many others, who have read the published articles, apparently are "impressed" by the success of Open Dialogue Therapy.

Part Three: What SSI and SSDI Rates Say

In this part of his review, Dr. Torrey states that while the number of individuals on disability for SSI and SSDI has “indeed increased alarmingly,” he argues that this is because these programs “have become alternatives to welfare for poor and unemployed individuals who have any kind of psychiatric problem.”

I agree this is partly true. But, as I detail in Anatomy of an Epidemic, our drug-based paradigm of care is fueling this epidemic too. One, the widespread use of stimulants and antidepressants has helped create a “bipolar boom” and  the disability numbers are soaring, in large part, because of an extraordinary influx of bipolar patients. Two, a review of the long-term outcomes data for antipsychotics, anti-anxiety agents, and antidepressants reveals that these drugs, in the aggregate, increase the risk of long-term disability.

Part Four: The Dopamine Receptor Story

This section of Dr. Torrey’s review has its interesting moments. He writes that if antipsychotics do indeed cause an increase in dopamine receptors (as I report in Anatomy of an Epidemic,) then “Whitaker is correct that this could potentially be a serious problem, but at this point in time the reality of the problem in humans is unknown.” Although antipsychotics have been shown to cause an increase in dopamine receptors in rats, he writes, it “still is not clear whether or not this also occurs in humans.”

But as Dr. Torrey well knows, there is in fact good evidence that it does indeed occur in humans.

As Philip Seeman first reported in Nature in 1978, the brains of schizophrenia patients at autopsy have 50 percent more dopamine receptors than controls. But at that time, Seeman and his collaborators were uncertain whether this increase in dopamine receptors was due to the disease, or caused by the antipsychotics. During the next decade, investigators in the United States, England and Germany investigated this question, and all determined that neuroleptics led to an increase in brain dopamine receptors.

“From our data,” German investigators wrote in 1989, “we conclude that changes in [receptor density] values in schizophrenics are entirely iatrogenic [drug caused.]”

Finally, in 2002, Seeman reported that, in a study that utilized positron emission tomography, he had documented this increase in dopamine receptors in living patients. This study, he reported, “demonstrates for the first time, using in vivo neuroreceptor imaging, that dopamine D2 receptor binding is increased after long-term treatment with antipsychotics in humans.”

Here is why this is so important. This increase in D2 receptors is thought to make patients more biologically vulnerable to psychosis. The increase may lead to severe relapses when patients abruptly withdraw from antipsychotics, and the worry is that it also leads to tardive psychosis—a deepening of psychotic symptoms—over the long term (when patients stay on the drugs.) In his 2002 paper, Seeman also found that those patients that had the “highest degree of D2 receptor regulation” subsequently developed “severe and persistent tardive dyskinesia.”

So, in this instance, give Dr. Torrey credit for acknowledging that a drug-induced increase in dopamine receptors could be a troubling thing indeed. But when he writes that it is “not clear whether or not this occurs in humans,” we have a new moment of dishonesty in his review to tally up.

Miscellany:

I could point to many other instances from Dr. Torrey’s review in which he hasn’t accurately represented what I wrote in the book, or has misrepresented the research literature. But detailing all such problems would take several thousand words more, and so I will let those pass.

However, there is one final bit of miscellany in his review that I want to address, and it has to do with Loren Mosher’s ouster from the NIMH.

Dr. Torrey states that Loren Mosher was not ousted from his position at NIMH as head of the Center for Schizophrenia Studies because he had led the Soteria experiment, but because the field “was moving strongly in a biological direction” and thus Mosher held views of schizophrenia that were at odds with this new wave in psychiatry. Dr. Torrey then writes this of my reporting on Dr. Mosher’s ouster from the NIMH:

“What is perhaps most surprising in Whitaker’s book, given his past career as a respected journalist, is his willingness to uncritically accept anything he has been told as long as it fits his thesis and his wish to blame antipsychotics for everything except global warming.”

The story of Dr. Mosher’s fall from grace at the NIMH is, in fact, easily documented, and it indeed is associated with the Soteria project. As internal written records reveal, the psychiatric establishment began attacking Dr. Mosher the minute he reported good outcomes for his Soteria patients. The study had “serious flaws,” the NIMH review committee snapped. “The credibility of the pilot study is very low,” it wrote. Evidence of superior outcomes for the Soteria patients as “not compelling.” And so on, and then, after the initial reports appeared  the committee hit Mosher with the lowest blow of all: It would approve further funding for the Soteria project only if he was replaced by another  investigator, who would then work with the committee to redesign the experiment.

“The message was clear,” Mosher said, when I interviewed him years later about the Soteria project. “If we were getting outcomes this good, then I must not be an honest scientist.”

When I reported this story in Mad in America, I obtained the written documents that detailed this response to Loren Mosher’s Soteria experiment. Those documents laid bare the hostility of the biological faction within psychiatry toward his study, and toward Mosher personally because of it. So rather than accept this story “uncritically,” as Dr. Torrey suggests, I dotted my I’s and crossed by T’s. In fact, this was the same reporting path–a reliance on documents–that led me to write Mad in America and Anatomy of an Epidemic. If had been willing to “uncritically accept anything [I] had been told,” then I would have written about the wonders of the “psychopharmacological revolution.” 

Dr. Torrey’s Review as a Foil for Assessing the Merits of  Outpatient Commitment Laws 

The fact that Dr. Torrey has written a scathing review of Anatomy of an Epidemic, asserting that I “made so many errors it is difficult to know where to begin,” is—in its guise as a book review–of little import. I had exchanged a couple of emails with him before his review appeared, and I knew this was coming. You cannot write a book like Anatomy of an Epidemic, which so directly challenges conventional beliefs, and not expect to be attacked, and it should not be surprising when the attacker misrepresents what you wrote, or twists things in order to try to publicly discredit you. Indeed, in the two years since my book was published, I have gotten quite used to reviews of this type, with defenders of the faith eager to inform readers that all is well in the world of psychiatric medications.

But here is why the review could be considered important to us as a society. We are embracing the increased use of outpatient commitment laws that force people to take antipsychotic medications, and we do so under the belief that these drugs are a necessary good for those people. This is an extraordinary thing for a society to do, to force people to take medications that alter their minds and experience of the world.

Yet, here is the story told in Anatomy of an Epidemic: If we look closely at Harrow’s study and a long list of other research, there is good reason to believe that these medications increase psychotic symptoms over the long-term, increase feelings of anxiety, impair cognitive function, cause tardive dyskinesia with some frequency, and dramatically reduce the likelihood that people will fully recover and be able to work. If this is so, how can we, as a society, defend our increasing embrace of forced treatment laws?

We can now ask this key question about Dr. Torrey’s review of Anatomy of an Epidemic. Given that he is a foremost proponent of outpatient commitment laws, what are we—as a society—to make of the fact that, in order to attack the book, he had to do so in a dishonest way?

By the end of the evening, we all left feeling hopeful and energized. I realized how much I wished I had access to a group like this 20 years ago, when I first realized my daughter was in distress.

In our Family Den, everyone acknowledged that the support of other families who had shared similar experiences was critical for their family’s recovery. We all confessed this kind of support has been hard to find. We have all experienced feelings of isolation. We have all been confused about our role in recovery.

At CooperRiis, the healing community I cofounded with my husband, we talk to families every day who are surprised to learn recovery from severe emotional distress is an option, much less an expected outcome.

When families don’t even know recovery is possible, we’ve got a BIG problem.

In our fragmented mental health care system, most of us learn about recovery by trial and error. Some never learn about it at all. If we’re lucky, families learn about and create recovery together by sharing our stories, our strategies and the life lessons we’ve learned.

This is why we founded Mother Bear Community Action Network—to provide a place where hope is real, families are supported and recovery for every family member is expected.

I look forward to sharing more about our international family-led network and our family recovery stories here on this blog.

Tomorrow, I’ll share a story about a family that was shanghaied in recovery until they learned that letting go with love can be an opportunity for every family member to grab on to a life worth living.

Until then, I’ll close with the affirmation we shared in our Family Den.

We come together to support and remind each other that recovery is expected. Family support is an integral part of recovery. We acknowledge that while we cannot recover for someone else, we can recover ourselves and, in turn, nurture the flame of hope in others.

You can join the discussion and our growing community families on our new website www.MotherBearCAN.org (where you will find more stories of hope and healing).

As one discussion forum participant recently said, “HOPE is a game changer.”

Yes, it is.

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When are psychological diagnoses used?

1. For reimbursement for third-party payers.
2. Mental health professionals communicating with colleagues.
3. Mental health professionals communicating with clients

In the first use, insurance companies and government agencies use diagnoses because they want to ensure that people only receive a treatment if they need it and that they are being given the most appropriate treatment for their problems.

In the second use, mental health professionals are trying to convey the most pertinent information about their clients and give their colleagues the highest quality understanding of a client’s situation.

In the third use, mental health professionals are trying to help clients understand what they are experiencing and why.

The natural question that arises here is whether the medical model of diagnosis is the best way to accomplish those aims. In order to address this question we will explore:

1. Are “mental illnesses” real?
2. Is thinking in terms of “mental illness” and diagnosis helpful to clients?

Defining the Medical Model

There are many ways to define the medical model of diagnosis. I will offer two. First, Gerald Klerman was highly involved in the creation of the DSM-III and was the highest ranking psychiatrist in the US government at the time. Just before the DSM-III was approved by the APA, Klerman published the following:

1. Psychiatry is a branch of medicine.
2. Psychiatry should utilize modern scientific methodologies and base its practice on scientific knowledge.
3. Psychiatry treats people who are sick and who require treatment.
4. There is a boundary between the normal and the sick.
5. There are discrete mental illnesses.  They are not myths, and there are many of them.
6. The focus of psychiatric physicians should be on the biological aspects of illness.
7. There should be an explicit and intentional concern with diagnosis and classification.
8. Diagnostic criteria should be codified, and a legitimate and valued area of research should be to validate them.
9. Statistical techniques should be used to improve reliability and validity.
   (Klerman, 1978) 

I would distill this perspective down to two main tenants:

In order to properly understand where this way of thinking came from, we can look to the two men that have been most influential in creating and advocating this model.

Emil Kraepelin can be thought of as an optimist. He was a German psychiatrist, a contemporary of Freud, who first proposed the idea of “psychological diseases.” In order to understand where this idea came from, we need to look at what was happening in medicine at the time. Kraepelin first published his theory just after Louis Pasteur proposed the Germ Theory of Disease. During Kraepelin’s career, he saw the shift in medicine from thinking in terms of imbalances and humours to thinking in terms of germs and diseases. He saw this shift in thinking lead to enormous advances in helping people.

As you can see, Kraepelin saw the field of medicine discover the causes of major diseases and develop cures and vaccines. He hoped that the disease model, if applied to psychiatry, could could lead to similar advances. So he set out to try to discover psychiatric diseases.  Since every real disease shares common symptoms, etiology (cause), and response to treatment, he believed that if he could correctly group symptoms, they would also share an etiology and response to treatment.

A Real Psychiatric Disease

In order to clarify what Kraepelin meant by mental disease, it can be helpful to look at a condition that actually meets those criteria. Wilson’s Disease is caused by mutations in the Wilson’s Disease Protein Gene (ATP7B) which causes copper accumulation. It has a single cause. Wilson’s Disease causes depression, anxiety and psychosis in addition to tremors and jaundice due to liver and nervous system damage. It has a recognizable cluster of symptoms. Removing copper from the system (through chelation) prevents further damage. Everyone with Wilson’s Disease responds in a predictable way to treatment.

Schizophrenia, Bipolar and Major Depressive Disorder are examples of so-called diseases that do not even come close to meeting Kraepelin’s criteria. After 100 years of grouping and regrouping symptoms, psychiatry has found extremely few diseases with symptoms, etiology and response to treatment that properly cohere. Certainly this way of thinking has not led to the kind of advances Kraepelin had hoped for. If Kraepelin were alive, I believe he would advise us to look for another paradigm.

Robert Spitzer was a Real Weirdo

Robert Spitzer was the creator of the DSM-III and chiefly responsible for taking Kraepelin’s ideas from relative obscurity to being the dominant paradigm in the mental health field. The adoption of DSM-III in 1980 was the most decisive move in the history of mental health away from thinking in terms of personal experience and the uniqueness of the individual in his social context, and toward the medical model.

Spitzer’s influence on the field was enormous. DSM-I and DSM-II both represented the view of psychological problems as being expressions of inner-conflict and difficult life experiences that were only able to be properly understood by understanding the individual or family. Spitzer’s DSM-III was the decisive break to a view of psychological problems as being best understood as specific disorders. There is no longer a need to understand the context.

Why was the mental health field willing to listen to Spitzer? In the 1970′s there was a crisis in psychiatry and the field was looking for a new paradigm. There was a broad antipsychiatry sentiment in academia and popular culture from Thomas Szasz and Michel Foucault to One Flew Over the Cuckoo’s Nest. Third-party payers were demanding that psychiatry demonstrate the efficacy of their practices as they wanted to be paid to treat people with increasingly mild distress. There was pressure from the emerging field of psycho-pharmaceuticals to be able to market their drugs for specific diseases and newly deinstitutionalized patients. Conflicts between various theoretical camps, and those who viewed psychological theories as too subjective were destabilizing. And psychiatrists were feeling threatened by other professionals delivering psychotherapy (Resnick vs. Blue Shields, 1980 was a court case that prohibited Blue Shields from requiring psychologists be supervised by an MD in order to provide therapy).

Psychiatry was obviously facing huge problems and it makes sense they were looking for a savior to save them. They chose Robert Spitzer.

In a 2003 interview with NPR, Spitzer described himself as someone who is much more interested in fitting puzzle pieces into a system than he is in understanding human emotion. In fact, he said that he did not view himself as having a particularly good understanding of people. As a 12 year-old boy, he would graph his attractions toward 5 or 6 girls at his summer camp. After retiring from psychiatry, he proceeded to develop a complicated categorical system for ballroom dancing. However, the ballroom dancing community has been less willing to adopt Spitzer’s categories than has mental health field.

When Spitzer began developing the DSM-III in 1974, diagnosis was an unpopular specialty. He was able to appoint himself to head all 25 committees. The development of the manual was not based on any research. Former Columbia Professor David Shaffer (who worked with Spitzer on the DSM-III) described the process as one in which a group of psychiatrists met in a small room and argued with each other loudly. He said that the loudest person would be the one whose view prevailed. In these discussions, they concluded it would be “ludicrous” to call racism a disorder, but that PMS was. Spitzer was in favor of keeping homosexuality a disorder but backed down after fierce protest. In other words, these categories were based on a small group’s subjective opinions rather than discovering actual diseases with symptoms, etiology and treatment response that properly cohere.

Why Did the Rest of the Field Follow Psychiatry in Adopting the DSM-III?

It is clear that psychiatry was looking for a new paradigm to reestablish their position atop the mental health field. But why did other professions follow? For starters, the most influential mental health professionals in government and private insurance were psychiatrists. This led to private insurance companies and government agencies becoming much stricter about requiring diagnosis after DSM-III. There was also a growing shift from out-of-pocket payment for therapy to an increasing reliance on third-party payers.

So Is Diagnosis Helpful?

While a fair amount of research has been put into trying to prove the DSM’s diagnoses are reliable, there has not been a single study aimed at testing whether using diagnoses increases therapeutic outcome. However, all evidence shows that mental health treatment as a whole has not improved since diagnosis has become ubiquitous. Clearly, Kraepelin’s hopes have not come true.

If Not Disease, Then What?

Returning to the three main reasons mental health professionals use diagnoses: (reimbursement, communicating with colleagues, communicating with patients), we can think of other paradigms that might be more effective at accomplishing these aims.

Other possible paradigms include symptom-oriented descriptions (listing client symptoms and severity without trying to group them into a disorder) and complaint-oriented descriptions (describing the client’s own reasons for seeking treatment). Consider the following:

I believe that we can better accomplish these aims without using the medical model of diagnosis. I do not believe there is any reason to believe that the diagnoses listed in the DSM are “real disorders” in the sense that both Kraepelin and Klerman hoped they would be.

What are your thoughts about the medical model of diagnosis vs symptom-oriented or complaint-oriented approaches?

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First, I’ll examine this question with regard to my personal life. Then, I’ll explore this question from the broader perspective of psychiatry as a profession. Finally, I’ll move beyond the topic of psychiatry.

I doubt that the practice of psychiatry is “salvageable” for me. The practice of psychiatry, within the medical systems of today, no longer holds the original appeal it had for me.

When I first opened my private practice in 1989, I enjoyed therapeutic relationships with my patients. I had fun exploring creative approaches to improve each individual’s life. Few medicines were available.  Patients paid me. Third party payment schemes were between the patient and his insurance company.

All of medicine has been transformed by two intertwining corporate maneuvers: the takeover of the practice of medicine by medical service provider corporations and unrestricted drug marketing campaigns. By these two powerful forces, the practice of psychiatry (and all of medicine) has been transformed.

Over the past twenty-five years, my role as a psychiatrist has been changed by the impact of these conjoined twins. I was one half of a doctor-patient relationship then. I’ve been re-formatted into an interchangeable cog inside medical service provider corporations. My function is limited to pushing the stream of pills from manufacturers to consumers.

The heart of the therapeutic relationship was ripped out of modern psychiatry. It was replaced by “preferred provider panels” and pre-authorization clerks on 800 numbers. Drug marketing campaigns caused an explosion of demand for pills.

The practice of psychiatry is now a factory job with nothing but prescriptions to offer strangers.

To say that this is dispiriting work for me would be an understatement.

If I still had my old federal student loan enforcement friends chomping at my heels, I would feel more compelled to hunker back down with my prescription pad. But I’ve spent my entire adult life sawing myself free. Those of you that still carry two-home-mortgages-worth of student debt with you into every life decision know what I mean: debt shackles.

There’s still an ocean of suffering to relieve. Allowed only my prescription pad and a time clock, I’m inadequate to the task. I drown when I try.

That’s me.

Now for a bigger picture.

When I was asked if I thought psychiatry was “salvageable”, the question caught my attention. I had to think more about this question than just my own small self, embedded in medical systems.

I had one of those “a-ha” moments.

Psychiatrists are not the only providers trapped in the dance of prescribing psychiatric drugs. More and more psychiatric prescribing isn’t done by psychiatrists.

Along with the ramped-up demand for pills caused by direct public and direct physician advertising, there has been a decades-long marketing campaign to promote the idea of a “psychiatrist shortage”.

I’ve been hearing about this “psychiatrist shortage” as part of the “doctor shortage” story since the early 1980′s when I finished medical school. After residency there was stiff competition for paying patients, hourly contract jobs and salaried employment. Just like today. I saw no evidence of a shortage.

This “psychiatrist shortage” was the rationale given for licensing nurses to be “prescribers” in Oregon. I was told they would work in under-served areas and that they would take the “easy” patients so that overworked psychiatrists would have time to manage the more difficult cases.

A commenter in an earlier blog said that they use physician’s assistants and nurse practitioners where he works for “prescribing” because they cost half as much as psychiatrists. “Prescribing” is what psychiatrists do there. These other “prescribers” are cheaper. Choosing a cheaper “prescriber” cog is a simple financial decision for a corporation.

Most “prescribing” in Portland mental health clinics is done by nurse practitioners and physician’s assistants, not by psychiatrists. Is this different anywhere else?

There has also been a methodical shifting of mental health “prescribing” out of the mental health clinics to primary care doctors and pediatricians. This movement is pushed by shifts in government funding. These patients no longer have access to non-pill mental health treatments.

Both social workers and psychologists have lobbied for “prescribing privileges” in Oregon. Both lost round one. Social workers and psychologists might charge less than nurses to write prescriptions. If it’s “cheaper” to have non-medical “prescribers”, money will do the talking.

Psychologists in two states and in the active duty military can now prescribe psychiatric drugs. It could be an interesting piece of research to discover how much of the funding for these initiatives came from drug companies.

Psychiatrists are completely disposable today.  In their diminished role as “prescribers”, psychiatrists are interchangeable pill pushers. Every psychiatrist could vanish tonight and there would be no change in the workings of the machine. The other “prescriber” cogs with their prescription pads would keep the pill-laden conveyor belt moving from pharmaceutical factories and down the waiting American throats of all ages.

Pharmaceutical profits would continue. Prescriptions would be written and refilled. Plus, there are social workers and psychologists clamoring for “prescribing privileges”, ready to help.

Psychiatry as a profession is finished.

What has happened to psychiatry is one small piece of what is happening throughout the field of medicine. The practice of medicine is one step behind psychiatry on the conveyor belt to the scrap heap.

Most physicians are now employees of medical corporations; either direct hires or members of provider panels. They are being downgraded into “prescribers” as well. They have had the heart of the doctor-patient relationship ripped out. They obey rigid formularies made up by the medical corporation bosses in their “prescribing” decisions and race to the time clock.

“Prescribing” as fast as they can, physicians can’t keep up with the artificially created demand for pills. Medical corporations have their own cost saving “prescriber” extenders to help them with this “physician shortage”: nurse practitioners, physician’s assistants, nurses, midwives and expanding pharmacist scopes of practice. Medical assistants, secretaries and software programs authorize refills working from standardized guidelines.

Last year, lucky for overworked Oregon physicians, naturopaths, with their newly expanded “prescribing privileges,” can join as full-fledged corporate cogs at the pharmaceutical conveyor belt.

Thanks for reading and thinking and writing.

Best always,

Alice

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I’ll need to post my speech in several parts because it is way too long for just one. I’ll do this over the next week or so to keep the connections apparent and allow for discussion along the way. No references are provided, also for space concerns. And, of course, a speech usually doesn’t work as well when it is written out, so my apologies in advance for the writing. However, in terms of being open, I wanted to relay as close as possible what I said.

For those who are not familiar with what “managed care” refers to, it is the dominant way that healthcare and mental healthcare has been provided in the USA (the only country to do so) over the last 20 years. If any of you have gone for healthcare during this time, what you were able to receive likely was greatly influenced by a managed care company, which is in turn paid by the government or businesses. This system of review and authorization has had a major impact on psychiatrists emphasizing medications and spending less time with patients, as well as any clinician not being able to provide a lot of psychotherapy or alternative services (if they want to be paid by the insurance coverage). These for-profit managed care companies are very large. For example, United Healthcare covers over 80 million people in the USA.

This insurance mechanism will increase if President Obama’s healthcare reform continues to emerge, and not struck down by the Supreme Court. If we want healthcare and mental healthcare that is provided under private insurance, Medicare, or Medicaid to improve, this part of the system will need to be addressed. I think relating it to human rights is one way to do so.

Speech

Let us start off with a straw poll and vote:
1. Raise your hand if you think that managed care hinders human rights.

2. Raise your hand if you think that managed care benefits human rights.

3. Raise your hand if you think it does both.

4. Raise your hand if you think it does neither.

(If we get enough answers on this blog, we can tally them and compare to what I got at the meeting; my answer will be apparent as we go along).

There is a handout available that copies the 1948 “Universal Declaration of Human Rights”. What I want you to quickly see, if you already have not, is the introduction, for it gives the case of why these rights are important to be known well by us, our patients, and the public. Here are some excerpts from this introduction.

“All human beings are born with equal and inalienable rights and fundamental freedoms. . . In the Universal Declaration of Human Rights, the United Nations has stated in clear and simple terms the rights which belong equally to every person. These rights belong to you. They are your rights. Familiarize yourself with them. Help to promote and defend them for yourself as well as for your fellow human beings.”

(To be continued in Part 2)

The bears kept me company in the cab, made me laugh, watched my driving and public relations for signs it was time to take a break, and helped me interpret the lessons you learn about the Human Sphere by picking up 40 people at random every night and driving them somewhere.

There’s every kind of people in New York, and sooner or later, they all get in your cab. If you don’t have mood swings when you start hacking, the public and the streets will give them to you.

But the most important thing the bears did for me was talk back to the nasty, horrible voices and hallucinations that were telling me to kill myself or somebody else.  If I ever did anything to contribute accidentally or on purpose to my own premature death, I could never go back to the woods and sleep through the winter with the woodsbears.

That was the Bureau’s Prime Directive, and there were no appeals or exceptions.  Contributing to my premature death would prove I’d been contaminated by the Human Condition, and contaminated bears could not be allowed back in the woods. \

So I never took stupid risks, pushed myself when I was too tired, or tried to kill myself.  Whenever the bears warned me, I listened.

I was a bear in the Human Sphere trying to travel back to the woods and sleep through the winter with the woodsbears.

The Bureau had sent me to the Human Sphere as part of an experiment. In the late 1800′s, the Bureau’s research department discovered that people were cutting down more and more of the woods.  If the trend continued, there would soon be no place for bears to live.

So they decided to send one third of the bears to the Human Sphere to live a lifetime, then come back to the woods.  That would leave a lot more room in the woods for bears.  You can recognize bears in the Human Sphere.  They have bear cheeks, noses, toes, bear tummies, and short bear legs.]

Theodore Roosevelt was a bear in the Human Sphere.  He preserved woods, and taught people to love and nurture them.  Government departments he created, that are being copied in states and other countries, are preserving forests to this day – but not nearly as fast as people are destroying them.  He popularized the teddy bear, which changed the public image of bears from something terrifying to something children sleep with and love.

Other bears in the Humansphere wrote children’s books and made movies about bears, became forest and wildlife biologists, and contributed to a new human appreciation of the woods and bears.

But the experiment had a massive, tragic unintended consequence.  The bears who came over ate too much human garbage, got contaminated by the Human Condition, and could not be allowed back to the woods.  A single bear, contaminated by the Human Condition, would contaminate and wipe out all the woodsbears.

Nearing 30 in 1975-77, a normal life for a bear, homeless in New York, my diet contained human garbage.  I was traumatized, experiencing crippling mood swings, suicidal, and desperate to go back to the woods before it was too late.  I petitioned every night at Bureau meetings in the cab.  They told me to hang in a little longer, have faith, and don’t violate the Prime Directive.

When Hollywood made a movie about the deadly combination of isolation and psychosis, they named it Taxi Driver. I heard the same voices in my head Robert de Niro did when he was driving, and when he killed all those people at the end, I knew just how he felt.

But the Bureau of Bears always talked me out of doing anything that would contribute accidentally or on purpose to my own premature death.

Fiction writers talk about a point in their process where they stop telling the characters the story, and the characters start telling them.  That’s how it was with the bears and me. But I couldn’t make them a novel, though I tried many times.  Writing about them always put me back in the cab.

If the genius psychiatrists from Harvard, who labeled me “manic depressive,” had known about the bears, they would have labeled me schizophrenic and delusional, given me as much major tranquilizer as I could stand.  They would have told my family to give up on me because schizophrenia is always chronic, hopeless, and progressive.]

So I didn’t tell them.  In fact, I didn’t tell anyone until 1995, when Patricia Deegan told me the bears were “brilliant. You channeled your illness to keep you alive.  Many cultures would consider that a spiritual gift, not an illness at all,” she said.

I was channeling my creativity, not my illness.  I doubt Pat would call post-traumatic feelings and behavior an illness today.

In 1997, I was listening to “I Shall Be Released” on the stereo.  I looked up and saw two big bear asses with little tails rocking back and forth out the front door.  I was perfectly OK with that.  Ever since, the bears have been a happy memory, not a lovable presence in my life.

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Some years later I heard duloxetine had been brought on the market in Europe as a bladder stabilizer. It is marketed as Yentreve.

To solve their successor to Prozac problem, Lilly turned instead to an isomer of Prozac. R-fluoxetine. This would emerge as Zalutria. The company was blazing a trail that Lundbeck (Forest) have followed since with Celexa becoming Lexapro, and Wyeth with Effexor becoming Pristiq and Astra Zeneca with Prilosec becoming Nexium.

But Zalutria ran into problems around 2000 when the data were sent to FDA. It interfered with cardiac QT interval on EKG tracings. When this happens those affected are at risk of simply dropping dead. If Zalutria does it badly enough to make it unmarketable, it has to be presumed Prozac does it also.

Since then other SSRIs such as Celexa and Lexapro have been reported to cause QT problems, and are running into problems for just this reason. In some cases companies appear to ‘discover’ QT interval problems in order to get some of their older drugs removed from the market. But while there were other reasons why they might have wanted to abandon it, in this case Zalutria’s interference with QT intervals was probably a major inconvenience for Lilly.

Lilly turned back to duloxetine and turbo charged their clinical trial program. It was during this program that one healthy volunteer on duloxetine, Traci Johnson, committed suicide. Lilly submitted an application to FDA to bring the drug on the US market for both depression as Cymbalta and for bladder stabilization. The FDA were not prepared to license it for bladder stabilization – there had been too many suicidal acts of women on duloxetine in bladder stabilization trials. But Cymbalta was let on the market for depression.

So how would a drug that the company at one point had abandoned, that had significant side effects – such as marked urinary retention, suicidality along with physical dependence – do in a market where the parent company were also trying to persuade doctors that many of their cases of depression were in fact bipolar disordered and should be prescribed Zyprexa. Well $3-4 billion per year is nothing to be sneezed at. Doctors from Alaskato Australia (see Petra’s story) rushed to prescribe it.

How does a company manage to turn a drug they had written off into a blockbuster? Why do doctors roll over in the face of good marketing? It all hinges on good stories. In the case of Cymbalta, the story was that this was helpful for pain. There was nothing about Cymbalta to recommend it for pain beyond other antidepressants. The marketing campaign might have even been worked out for Zalutria and just seamlessly transferred to Cymbalta. It makes little difference what the drug does. Companies listen to what doctors say they want and this is what they give them pretty well whether there is anything significant about the drug that would support these claims or not.

In this case Lilly were lucky, this story emerged just when the pain-killer Vioxx ran into trouble, and doctors were looking around for another new drug to help with one of the commonest problems in clinical practice – chronic pain syndromes. But it’s the listening to doctors and repeating back to them what they say they want that works every time. These are soothing not challenging stories.

Cymbalta brings out another story that doctors have been totally sold on for 40 years – a perfect symbol of modern biobabble. From early on the first of the tricyclic antidepressants, imipramine, was used to stop bed-wetting in children. The tricyclics got a reputation as bladder stabilizers – sometimes too much so as they could cause urinary retention.

How did tricylics stabilize bladders? Well in the 1960s the story emerged that the antidepressants fixed the lowering of norepinephrine that was at the heart of depression. If this was what they did to treat depression, something else they did must lead to urinary retention. The field settled on the anticholinergic actions of the tricyclics as the culprit. Every single text on antidepressants trots this out. This led to the marketing copy for the SSRIs, 20 years later, the new kids on the block that didn’t have the nasty anticholinergic side effects of the tricylics.

It was and still is almost impossible to find a psychiatrist to say anything other than this even though all of them prescribe much more potently anticholinergic drugs than the tricylics to patients within the mental health system to stop some of the side effects of antipsychotics, but these potent anticholinergics rarely if ever cause urinary retention.

Imipramine and duloxetine in fact cause urinary retention because they act on the norepinephrine system. The mismatch between what the books say and what is going on here is extraordinary. The story that it’s the anticholinergic effects of antidepressants that cause urinary retention is a myth in service to another myth, the catecholamine hypothesis of depression, the source of all later myths about chemical imbalances.

In fact if a group of 10 healthy volunteers were given an SSRI, a norepinephrine reuptake inhibitor or an anticholinergic, we know that on the SSRI there is a good chance that 1 would be suicidal, most would have impaired sexual function and other problems. Those on the norepinephrine reuptake inhibitor would have erectile failure, bladder stabilization, constipation, chilblains and other problems. What would those on the anticholinergic have? If the dose was not too high, the answer is euphoria. Of the three groups of drugs, the anticholinergics have the highest street value.

What’s the moral? You should believe little you hear about drugs and biology across medicine. What is peddled is for the most part a set of stories or myths. In the case of the antidepressants there is almost nothing but myths from chemical imbalances to lowered serotonin levels.

As with the myth that insanity was cause by masturbation, with mythologies in general the issue is whose interests are being served?

Readers can also view my blog posts (A Symbolta of Sorts) and find further information at www.davidhealy.org or visit my Facebook page.

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About a year ago I participated on a television panel which discussed the antipsychotic drugs and the massive settlements pharmaceutical companies paid out. A psychiatrist on the panel compared the need for these drugs for psychoses as comparable to a diabetic needing insulin. He also stated that psychotic disorders are lifelong ‘brain diseases.’ My time on the panel was limited to be able to address his statements effectively. If there is an ‘imbalance”, what does a correct balance look like? Where is the evidence?  If these are lifelong disorders, how does the establishment explain stories of true recovery?

In my work with persons undergoing extreme states of mind, none of them had any psychiatric hospitalizations during the time we journeyed together in therapy. All of them were also able to reduce or even eliminate psychiatric medications they had been previously prescribed and told they would need to take indefinitely. One woman prior to coming for a consult, had been hospitalized almost every two months and was on 4 different psychiatric medications. She now takes no medication, and has not been psychiatrically hospitalized sense. What happened? Was this just a spontaneous and miraculous shifting of her brain? I think not. It was about the connection, the relationship, that led to  true recovery. The bio-psychiatric paradigm states that if we have suppressed your ‘symptoms’ and you go about your day foggy with a mediocre job, if even that, you are ‘recovered’. But this is not true recovery. True recovery involves understanding the experience of the person, helping them to emerge from their crisis. It means that we help guide a breakdown into a breakthrough.

Here is some text from the back cover: “Many of the great prophets of the past experienced madness–a breakdown followed by a breakthrough, spiritual death followed by rebirth. With the advent of modern psychiatry, the budding prophets of today are captured and transformed into chronic mental patients before they can flower into the visionaries and mystics they were intended to become. As we approach the tipping point between extinction and global spiritual awakening, there is a deep need for these prophets to be free to embrace their spiritual gifts. To make this happen, we must learn to respect the sanctity of madness. We need to cultivate Mad Pride.”

It sounds awesome, right? I think it is, and I think it’s brilliant and visionary, even if I don’t actually agree with all his conclusions. Below is my response after Seth let me read our interviews. In the book his incorporates this text and responds to it:

Mad Pride and the Icarus Project Revisited – Some Final Thoughts by Sascha DuBrul
Reading over the transcripts of our conversation I’m struck by a couple things. First of all, it’s amazing to catch a glimpse of my own thought process as my anarchist sensibilities struggled to make sense of life in the ashram. It’s been a really interesting two years of synthesis as my internal pendulum has swung closer to the middle and I’ve gotten creative about integrating spiritual practice and politics into my life. I’ve found a lot of inspiration and lessons in the history of the Human Potential Movement of the 1960s and 70s—the incredibly fruitful intersection of Eastern spiritual practices and Western psychology that merged with the political counterculture of the times. So many of the insights and tools from this period—from gestalt therapy to encounter–were lost and discredited amidst the neoliberal biopsychiatric backlash of the 1980s. More and more I find myself drawn to engaged Buddhist philosophy and the Generative Somatics community we have here in the Bay Area that mixes social justice analysis and grounded group practices. I see a lot of potential in the slow and deliberate foundation that is being laid by our work.
But Seth, the most important missing piece for me in this conversation of ours about Mad Pride has to do with the role that trauma plays for so many of us who struggle with madness. After just about a decade of working on the Icarus Project and crossing paths with, at this point, thousands of people who identify as “mad”, one thing we all seem to have in common is that we have a lot of trauma and hardship woven through the stories we carry around about our lives.
On a very personal level, it’s clear to me that my “manic” and “depressive” episodes clearly have their roots in trauma from my past – they are reactions to early experiences. My inability to grieve my father’s death as a child left me with so much confusion, anger, and despair that as I got older I channeled that intensity into what gets called mania. It’s blocked energy and over the years I’ve learned how to work with it more effectively.
It’s not a universal experience and that’s an important piece of the story. There’s a whole tribe of us that are wired in a way to have these particular kinds of breakdown/breakthroughs. But if you really believe that there is “a distinctive mad sensibility different from the normal person”, I think we need to talk about how that narrative can leave room for the roles played by societal and familial trauma. And I think we need to distinguish between the “madness” of ecstatic vision and the “madness” of psychic anguish.
Us madfolks, we can throw crazy and wingnut and mad around as terms of endearment or insults as we please and I find it refreshing to hang out with the people who speak my language re-appropriated from oppression. It’s a relief when we’re surrounded by a society that’s steeped in the stifling bio-psych DSM lingo of disorders and dysfunctions. In that way, I appreciate your efforts to reclaim and redefine madness in this arena of language and politics.
The LGBTQ (Lesbian, Gay, Bisexual, Transgender, Questioning) movement has made great strides in recent decades by raising awareness around queer issues (“Gay Pride!”) opening all kinds of exciting doors of societal change. We have a lot in common in our struggles against what is considered straight and normal. But it’s one thing to be proud of difference in sexuality (homosexuality/queerness) and another to be proud of something that’s been earned through strife and suffering and/or a mix of (please excuse the clumsy mechanistic metaphor again) different wiring (madness.) This is not a cut and dry issue in my mind at all. It may be that everyone who’s diagnosed with schizophrenia is having a spiritual emergence, but I don’t think that’s an obvious conclusion to draw. I think a trauma analysis can often be more useful than a spiritual one.
Leaving alone these tangled and complex questions of spirit and material, I want to bring up another aspect of strategy: what do we want our “Mad Pride” movement look like on the ground and in real life?
Before my last hospitalization (and around the time I wrote those last blog posts you’re quoting about the “mad ones”) I was sleeping really badly. I was having visions and dreams of the end of the world. I was isolating from the people closest to me. I was spending hours every day walking in the woods and having conversations with dead people. I often thought I was a spirit in the material world. Was I “mad” by society’s definitions? Clearly.
But more important for our conversation, was I “well” by my own standards and the standards of my community? Did our culture of “Mad Pride” help me in this case to stay healthy? In retrospect, I think the answer is no.
In the culture of the Icarus Project some years ago we developed a rough prototype of a document we call a Wellness Map (or affectionately a “Mad Map”.) It’s a very practical document to be written in good health and shared with friends and loved ones and it starts with the simple (yet not always easy to answer) question:
How are you when you’re well? What does wellness look like to you?
This question is followed by: What are the signs that you’re not so well?
and eventually: What are the steps that you and your community need to take to get you back to wellness?
In my case, I used my “Mad Pride” to totally ignore all the warning signs that I was going off the deep end. I wasn’t being clear with myself or the people in my life about my wellness. I strongly believe that if we want to build an effective movement we have to prioritize our individual and collective health and wellness. And it needs to be way more nuanced and complex than the DSM We need to weave this healthiness into our emerging culture. The psychiatric survivors movement doesn’t have such a great track record in this regard. Hopefully we can do better in the future.
I write these words as the Occupy movement has taken the country by storm and set up encampments in public squares all over the United States. Mental health is one of the major issues the new movement is grappling with as people attempt to participate in group process sleeping outside and surrounded by police. It occurs to me that in this instance more health and wellness and less madness might be what is needed. Working in groups takes skill and my experience of creating “mad” community is that it is hard to make decisions if there isn’t a way for people to ground.
I’m not saying that “Mad Pride” can’t be a really useful rallying cry for the tons of people who’ve been affected by the psych system and want a new empowering narrative and a way to connect with other like-minded folks. I’m saying that that I’ve personally rubbed up against it’s limitations in our movement work and I think that we need to be very clear about our intentions in using this powerful language as a way to bring people together.
So I hope this book ends up opening up some useful space for discussion in our greater community and that all the writings and thoughts you’ve put together help evolve the conversation in creative directions.
Let our Mad Pride movement be grounded in humility and kindness for each other in our diversity of life experiences, a recognition that social movements need good communicators and organizers more than charismatic leaders and messianic visions, and that the beautiful language we use to describe ourselves is only as powerful as the grounded actions we take to back up our words.
Mad love, Sascha

As I mentioned in a previous blog, Mental Health & Recovery Boards have the ability to influence the types of care that are available in a localized area for persons diagnosed with mental/substance disorders (a series of blogs on how we’re approaching DSM, Diagnosing, labeling is forthcoming).  This ability comes from the Board’s statutory authority to direct federal, state and local funding based on local community needs.  While federal funding sources are largely being removed from Boards, state and local funding remain.

Boards are comprised of 18 local citizen volunteers (including persons in recovery from “mental Illness” and family members of persons diagnosed with “mental Illness”).  The Board hires an Executive Director to run the operation and empowers the Executive Director to hire additional staff as needed to accomplish the mission of the organization.

For Ashland County then, the solid foundation began with convincing Board members of the need for serious reform in the way we (1) conceptualize “mental illnesses” and (2) operationalize “treatment” If you are considering doing something similar let me encourage you to be patient and thorough with these beginning steps.  Our Executive Director says repeatedly that without the support of Board Members we would not be able to pursue the reforms we are engaged with.  Once a decision is made to proceed down this path of reform, criticism, skepticism, disdain, hostility, etc. will likely be directed at the organization.  Therefore, I encourage you to get this foundational step right so you can weather the opposition to come.

There are different approaches available to help convince groups of the need for reform.  The approach we’ve taken is to provide educational materials (SAMHSA Recovery Consensus Statement, Medication Optimization, Choice, and Alternatives: A Statement from Peers in the Consumer/Survivor Recovery Movement) and bring in well-known advocates and international speakers that espouse the change we’re pursuing.  The educational materials must not be overly “technical” as most volunteers do not have the time (or stomach) to digest this type of information.  It is the responsibly of the Executive Director and his/her staff to faithfully translate this type of information into “plain English”.  Exposing Board members to consumer-survivors and their stories was also critical to put faces to the current challenges, hope for a better future, and a sense of urgency.

Get this step wrong and two years down the road of “reform efforts”, you will find the whole thing collapsing, your job on the line and vulnerable people still at risk.  Take the time to establish a solid foundation!

Next Time:  “Nothing About Us Without Us” How meeting Pat Risser changed my life!

Duane Sherry
May 13, 2012

For most of my adult life, I have worked with people with severe disabilities.  It’s been with humility that I’ve witnessed the courage of many people who’ve faced enormous obstacles and seen their spirits in action. These individuals serve as examples for each of us – to face our challenges head-on; to do our best to rise above them; to focus on our gifts and talents; and to use them to do extraordinary things.

It’s been through my work in the field of rehabilitation, that I’ve come to believe in the human spirit and the strength that comes from learning to tap into its source.  When we do so, we open ourselves to new levels of hope and inspiration and endless possibilities to experience the fullness of life.

In 1990, the Americans with Disabilities Act (ADA) was passed by Congress and signed into law.  This historic act provided the “reasonable accommodations” needed to allow disabled people to enter courthouses, public libraries, city buses, local restaurants and the front-doors of employers; often for the first-time.  The “least restrictive” clause of the ADA has allowed those same individuals to find “inclusion” in their communities; to gain access to opportunities of all kinds; and to live full and productive lives.

The strides we’ve made in this nation for people with physical disabilities are in stark-contrast to the way we continue to treat those who have been diagnosed with severe “mental illness”.  I have yet to meet an adult with a physical disability who was forced to undergo a particular medical treatment or who lived in fear of having someone lock them up against their will if they were not “compliant”.

Nor have I heard that treatment caused “more harm than good” from what often appears to be the vast majority.  With physical disability, there are some people who might have preferred a less-intrusive surgery or were not pleased with a medical procedure.  But only in the area of mental health treatment is injury the common-denominator for so many who have been given a psychiatric diagnosis.

The one-size-fits-all paradigm of care known as conventional psychiatry is unlike any other form of medicine. Patient consent and participation is all but nonexistent; alternatives are often ignored; incarceration, drugs and ECT are used by force; and those who are injured are often left to sort through the fallout on their own, without recourse.

I put together a vision for Congressional legislation that addresses these concerns.  Once implemented, it will forever change the mental health system.  I hope you will take a few moments to read it.  Feel free to post a comment through the ISEPP link indicated.

http://discoverandrecover.wordpress.com/mental-health-freedom-and-recovery-act/

Yours in liberty and wellness,

Duane Sherry, M.S., CRC-R

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David Oaks at Occupy the American Psychiatric Association, May 5, 2012

Ted Chabasinski at Occupy the American Psychiatric Association, May 5, 2012

Adina Lambert of ISEPP at Occupy the American Psychiatric Association, May 5, 2012

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Homeland adds to a growing list of psychiatric treatments featured as characters in plots. While inaccurate it does not portray ECT as horrifically as Clint Eastwood’s The Changeling, which starts with a clip saying it is a true story – not just based on a true story. The Changeling portrays the horrors of psychiatry as they have been since One Flew over the Cuckoo’s Nest – through involuntary ECT – even though the heroine’s incarceration happened 10 years before ECT was invented.

The only explanation for getting the history so wrong in a “true” story is that ECT inflicted in this way clearly epitomizes fears about psychiatry. But forced treatment with ECT is vanishingly rare. In practice insiders, staff and patients, are more likely to fear forcible and indefinite medication with long-acting antipsychotic injections – a treatment that is more clearly brain damaging, memory disturbing and likely to turn a person into a zombie than ECT.

In terms of the greatest amount of damage done to the greatest number of people, the real abuses, the real dramas, lie in primary care treatment with prescription only drugs like the antidepressants, statins, asthma inhalers and other drugs. Where ECT given punitively, as has happened in the past, might be compared to rape, something closer to sexual abuse or sexual harassment happens with prescription drugs (see Pharmacological Abuse).

The psychiatric detention or treatment papers aren’t in evidence when we are prescribed a prescription drug. We are free to walk out the door after a consultation, and we think as a consequence that there is nothing to worry about.

But prescription links us inescapably to a prescriber. For most of us, going to the doctor is like going to the bank manager or the head teacher – we feel a few inches tall, absurdly grateful for the smallest signs of favor, and often completely forget what we had meant to say. If things begin to go wrong after treatment starts, the doctor may quickly seem like our only way out. We become ever more dependent on him, and grateful.

We head into a medical version of Stockholm syndrome – the puzzling state where hostages are often close to being in love with those who have taken them hostage. If the difficulties we develop are caused by the treatment and the doctor doesn’t recognise that what he is doing is wrong for us, we become hostages to fate.

It can be extraordinarily difficult to distinguish between the anxieties, insomnias, and morbid thoughts that treatments can cause even in healthy volunteers and the anxieties, insomnias and morbid thoughts stemming from the problem we took to the doctor in the first instance. It is effortless for the doctor to blame any worsening on our original problem, rather than his treatment. With much less going for them, surgeons blamed the victim faced with the evidence of memory problems after cardiac surgery, and psychiatrists routinely blame patients hooked on antidepressants or tranquilizers or who get diabetes from antipsychotics.

We can become isolated astonishingly quickly. If we approach someone for help in the case of an antidepressant, we have to risk the stigma of being seen to have a mental problem and then also risk being stigmatised as a loser. We risk incomprehension – even if we approach mental health professionals, none of whom are likely to side with us rather than the doctor. We risk having our next prescription increased to treat our illogical thinking. No one will call this a reprisal. If for some reason, we are listened to and treatment stops and we get worse, no-one is likely to counsel patience to help see us through what might well be a withdrawal syndrome.

Our questions will be put in the weighing scales against the scientific answers and found wanting. There is no-one on our side who is likely to point out that the so-called scientific evidence has been carefully constructed by companies, who suppress trials that don’t suit their interests, and who selectively publish data from trials so that even a trial that has shown a drug fails to work and can trigger suicide can be transformed into a trial that shows unparalleled evidence of efficacy. No one to point out that pretty well all the trials published in even the best journals are likely to be ghostwritten. No-one to point out that lawyers and others looking after the interests of pharmaceutical companies regularly take advantage of medical innumeracy to hide even more dead bodies by constructing trials so the results will not be statistically significant.

As in other areas of abuse, if we wait for the abusers to recognise the problem we are likely to wait for ever. As in so many other areas from Enron to sexual abuse, it is likely to be women who will blow the whistle.

Rebekah Beddoe’s 2007 book Dying for a Cure does this. Following a post-partum depression, Beddoe outlines a drama of seduction, increasing personal confusion, family bewilderment and finally survival against the odds.

Dying for a Cure calls out for a movie to be made of it – but we are likely to be waiting a long time for Clint Eastwood or a future episode of Homeland to take on this challenge. What stops them? In contrast to The Changeling, the problems found in Dying for a Cure are ones in which we are all complicit.

If directors are not prepared to take on the challenge, as a matter of honor they should desist from making movies like The Changeling, which by picking out the wrong villain play a part in perpetuating the kinds of abuse that makes medicine induced death possibly the leading cause of death in the Western world today.

Readers can also view my blog posts (Shocking the Homeland) and find further information at www.davidhealy.org or visit my Facebook page.

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This study’s introduction:

This study’s conclusions:

The findings of links between attachment and emotion regulation in this sample of individuals with psychosis suggest that attachment theory provides a useful framework in which to conceptualise emotion regulation difficulties in this client group. Associations between attachment avoidance and emotion regulation are consistent with previous research in non-clinical populations, which demonstrate that insecure-avoidant individuals employ avoidant defences, such as denial and repression, to inhibit emotional states that may activate attachment behaviours such as vigilance to the presence of the attachment figure, seeking out the attachment figure and distress following separation from the attachment figure (Shapiro & Levendosky, 1999). Similarly, associations between anxious attachment and emotion regulation reflect previous research demonstrating that people who score high on attachment anxiety tend to react to stressful events with intense distress and ruminate on their emotions instead of focusing on what to do about the problematic situation (Mikulincer & Florian, 1998).

As predicted, the more positive patients perceived their relationship with staff, the less emotion regulation difficulties they reported. From an attachment theory perspective, the child comes to understand his or her emotions by the mother’s ability to accurately ‘reflect back’ her child’s internal experience. This ‘emotional attunement’ or ‘mirroring’ is primarily a non-verbal mode of communication between infant and caregiver, which is essential for optimal emotional development (Schore, 2007). A similar process may therefore be occurring in the patient–staff relationship.

The lack of association between staff and patient ratings of the therapeutic alliance suggests that a mental health worker’s perception of how their client values the relationship may not always be an accurate reflection of the patient’s perception. Previous studies have found only modest correlations between patient and therapist ratings of alliance using psychosis samples, with a tendency for the patient to view the relationship more positively than the therapist (Barrowclough et al., 2010; Couture et al., 2006). In the current study, patient ratings were lower than staff ratings, which may reflect social desirability bias or differences in sample selection criteria given that the staff sample in the current study were key workers.

Attachment anxiety predicted emotion regulation over and above the variance contributed by psychotic symptoms and negative emotion; however, attachment avoidance did not. Attachment was assessed using the two dimensions of anxiety and avoidance; therefore, any associations between an individual’s level of attachment avoidance and specific emotion regulation strategies may be accounted for by their levels of attachment anxiety.

Criticisms of the study design include that it was cross-sectional. It is therefore not possible to determine the direction of associations between variables. From a theoretical perspective, early attachment experiences are more likely to precede and contribute to the development of emotion regulation. Associations between emotion regulation and the therapeutic alliance are more likely to be dynamic and bi-directional, with emotion regulation exerting an influence on the quality of the therapeutic alliance and vice versa.

The authors also acknowledge that the study conducts a number of analyses without correcting for multiple comparisons. As this is the first study to investigate relationships between emotion regulation, attachment and the therapeutic alliance, the hypotheses were considered exploratory in nature and it was felt better not to be overly conservative when conducting the analyses. However, this can be taken into account when interpreting the results without necessarily needing to perform post hoc adjustments such as Bonferroni’s method (Perneger, 1998).

Despite these caveats, this study furthers our understanding of the role of attachment and the therapeutic alliance in individuals with psychosis. It makes an important contribution to the literature by providing preliminary evidence to suggest that attachment and a positive patient–staff relationship facilitates the development of emotion regulation in individuals with psychosis. Following on from this, it would seem logical to consider the implications for therapeutic interventions that are both informed by attachment theory and practical to implement into the wider multidisciplinary team (MDT).

The links between attachment and emotion regulation in psychosis highlight a need to vary therapeutic approaches in accordance with patients’ attachment styles. This may be achieved by managing the ‘therapeutic distance’ (Daly & Mallinckrodt, 2009). For example, a gradual increase in the therapeutic distance is required for patients with anxious attachment who must then manage the resulting frustration. Conversely, therapeutic distance is decreased for avoidantly attached patients who must then manage their fears of intimacy. Increased distance is facilitated by setting firmer boundaries and gratifying patients’ needs less frequently, whereas decreased distance is created by insisting on higher levels of intimacy and focusing on ‘here and now’ aspects of therapy. Attachment theory would predict that changes in attachment style in therapeutic relationships would change an individual’s internal working model of relationships, which would transfer to relationships outside of therapy. There is some evidence that attachment styles can change as a result of therapy (Daniel, 2006); however, this is an area that needs further research.

The links between the therapeutic alliance and emotion regulation in psychosis highlight a need to train MDT staff in ways of facilitating emotion regulation and managing difficulties in attachment relationships. Gumley and Schwannauer (2006) provide a comprehensive treatment model, which incorporates an interpersonal focus into existing evidence-based psychological therapies for psychosis – Cognitive Interpersonal Therapy (CIT). A key feature of this treatment protocol is that it is designed to be incorporated into the wider MDT, and training aimed at encouraging staff to reflect on their own beliefs about psychosis, relapse and recovery is provided.

Developing staff self-reflection would likely promote self-reflection in their patients. For example, key workers who are attuned to their own feelings and internal states may be more likely to facilitate the recognition and labelling of internal states in their patients, ultimately enhancing emotion regulation. This ability to understand the internal states of oneself and others is known as ‘mentalisation.’ The discrepancy between staff and patient ratings of the alliance in the current study might suggest that staff and service users do not talk openly about their feelings in relationships. This ability may be another way of helping clients to recognise their internal states and thereby enhance emotion regulation.

There is emerging evidence that mentalisation deficits exist among individuals in both chronic and early course psychotic illness (Kettle, O’Brien-Simpson & Allen, 2008; Vogely, 2007). A recent case study (Brent, 2009) illustrated the application of mentalisation based approach to treatment to a patient with a psychotic disorder with promising results (Mentalisation Based Therapy: MBT, Bateman & Fonagy, 2006). MBT is undemanding in terms of training and therefore practical to implement into the MDT; however, it remains to be seen whether this therapy will prove effective in clinical trials for psychosis. Furthermore, it will be important to ascertain whether skills developed in therapy will translate into the client’s life outside of the therapy environment.

It is anticipated that future research will strengthen and develop the current study’s findings. Preliminary evidence suggests that the DERS is a useful measure of emotion regulation in psychosis samples; however, further work to establish reliability and validity of the measure in this population is warranted. Experienced Sampling Methods (ESM: Larson & Csikszentmihalyi, 1983) have also been used to study emotion regulation in psychosis samples by recording daily fluctuations in mood (Myin-Germeys, van Os, Schwartz, Stone & Delespaul, 2001), and could be used in studies investigating attachment and the therapeutic alliance in this client group.

My suspicions were kindled when I happened to be chatting with the Chairperson before an important  meeting with the Monitor team (Monitor is the organization that approves and regulates Foundation Trusts).

‘Great thing this Foundation Trust malarkey’ he said, filling my cup with tea. ‘D’you know what?’ he continued, ‘we’ll be able to set the execs’ and non-execs’ salaries according market rates. Never mind what the NHS says.’

‘Oh? I replied, staring hard at my prawn sandwich.

‘Yes’ he said ‘and a jolly good thing if you ask me.’

Shortly after this exchange, Bob Diamond, the CE of Barclays Bank, created a national furore by accepting a £20M bonus when global capitalism was shaking at the knees and unemployment was accelerating.  I decided enough was enough and handed in my resignation.

For over thirty years, advanced liberal democracies have been through an economic and cultural revolution, and this is the focus of a book called The Spirit Level by Richard Wilkinson, trained in economics and epidemiology, and Kate Pickett, trained in epidemiology and physical anthropology (Wilkinson & Pickett, 2009). Their core argument is that the best predictor of the health and well-being of a population is its level of income inequality. They support their argument with graphs and statistics showing how income inequality in rich and poor countries, in Europe, the USA, and across the globe, is significantly correlated with measures of a wide variety of health and social problems. No matter where you look, crime, drug misuse, teenage pregnancy, educational failure, and of course, rates of mental illness, are all correlated with income inequality. High levels of income inequality are associated with higher levels of problems. The USA and UK, two countries with the highest levels of income inequality, have the highest rates of health and social problems. Countries like Japan and the Scandinavian countries that have the lowest levels of income inequality, have the lowest rates of problems. The key issue is not absolute poverty, at least not as far as the rich and relatively prosperous countries are concerned (it is of course a major problem in the poor countries of the world) but income inequality – the magnitude of the difference between the highest and lowest paid. This is clearly the case as far as mental illness is concerned, using data from the WHO World Mental Health Survey Consortium – see fig. 5.1, p. 67). The use of illegal drugs rises with income inequality. Children in countries with higher levels of income inequality have lower math and literacy scores (fig. 8.1 and 8.2, p. 106).

The interpretation of correlations is a risky venture. Looking at their graphs it is easy to believe, that they have discovered the cause of every known human and social ill. Of course they haven’t, and that’s not their claim. If A is strongly correlated with B it is impossible to know whether A causes B, or B causes A, or whether both A and B are caused by a third variable, C, about which nothing is know. As befits scientists and academics, the authors are conservative in the claims they make for the facts they present. But the fact that so many variables are related to income inequality, and not other indices such as absolute poverty, demands serious attention. How do they account for these relationships?

They draw on research from a number of scientific disciplines, neuroscience (dopamine and reward systems), psychological mechanisms (self-esteem) and the evolutionary importance of status and shame, but I am not convinced. However, their most convincing argument concerns the effect that inequalities have on how you think other people see you. Unequal societies are not only more hierarchical, but the evidence suggests that the individuals who live in such societies tend to be more selfish, solitary and individualistic. They are also more competitive and less trustful of their neighbours. In contrast, people who live in societies that have low levels of inequality tend to be more trusting, value friendship, and their communities are characterized by  mutuality, equality and reciprocity. Inequality, it seems, creates a form of subjectivity that perceives human relationships in terms of domination-submission, power and authority. How does this help us to make sense of the link between income inequality and mental health?

Wilkinson & Pickett argue that living in an hierarchical, mistrustful society has implications for intimate family relationships: ‘Domestic conflict and violence, parental mental illness, poverty of time and resources will all combine to affect child development.’ (Wilkinson and Pickett, 2009: 111). There is abundant evidence that income inequality has adverse effects on the quality of family life and relationships. Children living in low-income families are more likely to witness more family conflict and to experience violence  (Evans & English, 2002). Of course not all parents and families in low-income families are to be characterized in this way, but how parental experiences of income inequality, in the workplace, the dole queue, on the streets, are mediated within the family environment is bound to have an impact on family relationships and thus their children’s experiences. This is not to say that parenting difficulties and the associated problems are limited to poor families. Evidence from America indicates that across middle-class, working-class and poor families there are differences in how language is used, the organization of daily life, and the extent to which family members are connected (Lareau, 2002). However, some parents have high levels of resilience, others may become neglectful or abusive (McLoyd, 1990, McLoyd & Wilson, 1990).

At this point I must confess to a sense of unease with sociological comparisons of the family life and child-rearing practices of people from underprivileged backgrounds and their more fortunate peers, especially when many of these are based on ethnicity – Black compared with White. It is too easy to become a flâneur, a dilettante idler and gawper at other people’s misfortune, one who wanders untouched through the wastelands of misery and suffering without really doing anything about it.  Even worse, at the back of my mind there are one hundred year-old echoes, of utopian socialism and, much worse, fascism. Both these ideologies resorted to eugenic theories (upon which the Nazis acted) to solve the problems of ailing societies. But ultimately, it depends upon the purpose that such comparisons serve, and these sociological comparisons inflame my passion to want to do something about it. But what should we be doing? How should mental health professionals respond? Surely, you might argue, economic inequalities are of no concern to us? I disagree.

A paper by John Read and colleagues (Read et al, 2001) proposes a model for understanding how psychosis arises in response to the sort of adverse childhood experiences (ACEs) that are more likely to arise in the low-income, low-status families described by Wilkinson and Pickett. They make a powerful argument that although the link between ACEs, stress and psychosis has been recognized for many years, scientific research has chosen by and large to disregard this. This is because the diathesis-stress (or biopsychosocial) model assumes that diathesis is fundamentally genetic, and thus environmental factors that constitute stress, such as childhood adversity are placed exclusively in the stress component. Stress is nothing more than a non-specific precipitant that releases something more fundamental and biological. Thus ‘…the causes of the vulnerability are rarely sought in the interpersonal domain’ (Read et al, 2001:320).

Wilkinson and Pickett’s (2009) book is an important contribution that  draws attention to the links between inequality, adversity and distress. The paper by John Read and his colleagues is an important and significant step forward in helping to understand how adversity, particularly childhood adversity, and psychosis are related. But there is a piece missing from the jigsaw. What neither achieves is how, in individual cases, ACEs are understandable. This is because both resort to scientific narratives to establish casual links, but this takes us no further in understanding how the individual’s life and experience is shaped and turned into narrative by these forces. These particular narratives are not fairy tales, or soap operas, but tragic moral stories of abuse and oppression, woven into and against the broader socio-economic factors described by Wilkinson and Pickett, and borne by the warp and weft of neurodevelopmental factors described by John Read.

In her powerful personal account of her recovery from a devastating sexual attack in which she was left for dead by her assailant, philosopher Susan Brison (2002) points out that most of us share in common the belief that we live in a just world. We want to believe that nothing that is either terrible or undeserved will happen to us. Yet our personal experiences of life suggest this isn’t the case. Still, we struggle upstream against the current in maintaining this belief. In the face of trauma, abuse, and random tragedies, some authored by human agency, some not, we cling to the belief that the world is a just place. But it isn’t, and this is why we must recognize that bearing witness to injustice is an essential component of recovery; it is the missing piece in the theories and work of mental health professionals. Scientific models of trauma, whether neurodevelopmental or cognitive psychological, offer an incomplete response to what in personal and interpersonal terms is primarily a moral task.

Yes, we must work to reduce income inequalities, to make the world a less hierarchical place, and to facilitate mutual cooperation, reciprocity and trust in the ways set out by Wilkinson and Pickett in the final chapter of their excellent book. Yes, we need a new research agenda that deals explicitly with the relationship between ACEs and their neurodevelopmental consequences as John Read and his colleagues suggest. But at the same time we must recognize that before anything else is said or done, inequality, oppression and abuse are moral problems.  The great difficulty is that at the moment there is no common tongue that enables mental health professionals and academics to talk with people who experience madness and distress in ways that encompass the social, the psychological and the moral. This is a problem that can be addressed by dialogical views of human subjectivity (see, for example, Vygotsky, 1978) through which we can develop the idea of the moral imagination. We must see, feel and understand the importance of placing ourselves in the position of the Other, and bear witness to their suffering by doing our utmost to see the world through their eyes.

References

Brison, S. (2002) Aftermath: Violence and the Remaking of the Self. Princeton, Princeton University Press.

Evans, G. & English, K. (2002) The environment of poverty: multiple stressor exposure, psychophysiological stress, and socioemotional adjustment. Child Development, 73, 1238 – 1248.

Lareau, A. (2002) Invisible inequality: social class and childrearing in in black families and white families. American Sociological Review, 67, 747 – 776.

McLoyd, V (1990) The impact of economic hardship on black children: psychological distress, parenting, and socioemotional development. Child Development, 61, 311 – 346.

McLoyd, V. & Wilson, L. (1990) Maternal behaviour, social support, and economic conditions as predictors of distress in children. New Directions for Child and Adolescent Development. 46, 49 – 69.

Read, J., Perry, B., Moskowitz, A. & Connolly, J. (2001) The Contribution of Early Traumatic Events to Schizophrenia in Some Patient: A Traumagenic Neureodevelopmental Model. Psychiatry, 64, 319 – 345.

Vygotsky, L.S. (1978) Mind in Society: the development of higher psychological processes. London, Harvard University Press.

Wilkinson, R. & Pickett, K. (2009) The Spirit Level: Why Equality is Better for Everyone. London, Allen Lane (Penguin Books).

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Someone once said to me “They’re making me go to a social phobia support group. Great. We all just sit around staring at each other.”
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This question, when asked only of psychiatrists, comes with less-than-flattering assumptions.  The thought that “not knowing” is a psychiatrist affliction implies that psychiatrists either have a brain that is different from other people or that they have dark hidden motives driving their lack of awareness.

Making these assumptions about psychiatrists could block collaborative relationships, especially for any person with a history of paddling in the “mainstream” of mental health care.

Broadening this question to encompass all people, rather than just psychiatrists, can give us a better understanding of how we all got into the situation of using drugs with more risks and less benefits than we were initially taught.

Since I believe that all kinds of people working together will be required for the necessary transformation of mental health care, I’m willing to take the risk and explore one possible answer to this question:

“How can any person not have known?”

This question, originally asked of me as a psychiatrist, mirrors questions that arise in my mind when I watch people engage in behaviors with well-known risks.

Here are three examples:

Cars are the number one cause of death among Americans up till the age of 34. Forty-thousand Americans die every year through the use of cars. We still drive a lot.

Despite the known risks of eating fast food, over twenty percent of Americans eat fast food on a daily basis.

Tobacco has mandated health warning labels on every package but people still use it.

It’s as if the information about risks doesn’t make it to the decision-making center of our brains.

So this question is not only about psychiatrists. This question relates to one of the basic thought processing functions we all share.

I have a metaphor that helps me understand how this could happen to anyone, how anyone could “not know”. My “head in a bucket” metaphor for information sorting reflects the sense I get when I think about this question.

It seems to me, some days more than others, as if everyone wears a bucket over his head. This is a substantial bucket with a variety of sizes and shapes of holes drilled through it. Some sizes and shapes of information get through. Others don’t make it past the bucket to the eyes and ears and into the brain. Some chunks of information must be the wrong shape or size to get through.

This head-bucket, with all its variety of holes, is part of the cognitive operating system we’ve all inherited.

From an information gathering and sorting perspective, one job our brain has to accomplish is filtering out unnecessary information. You would be swamped in data if every sound and flicker of light were allowed into your head every moment.

This filtering process includes assignment of relative value to information. This way your filter will be able to let in important information and keep out the dross. Emotional content is one key to assigning value to categories of information. Emotions help decide how inclusive or exclusive a hole needs to be on your filter bucket. For example, it’s important for a person with a bee sting allergy to avoid bees. Bees can kill, so bees are scary. This person will notice anything bee-like in the environment.

Our drilled head-bucket filters out information for us like a champ. It blocks anything out that doesn’t match our beliefs and lets in what does. Yours does it. Mine does it. Everyone’s head-bucket does it.

Einstein noticed this. He said “It’s the theory that decides what we can observe.” I would say that it’s the holes in the invisible bucket I wear over my head that decides what I can observe.

But how do these holes get drilled in our buckets?

This answer has been known by educators, leaders, and marketing wizards for a long time. Cognitive therapists know the answer, too.

The word “belief” can be used for each of the holes that are drilled through our perception-filter head-buckets. Repetition causes belief. Emotions power the drill.

We have holes drilled by parents, teachers and advertisers. We accumulate other holes in our head-buckets through life experiences. Some, we drill using our own private repetitive thoughts. This last way to get beliefs, by drilling them on our own with repetitive thoughts, can be a curse or a blessing, depending on how we drill them.

Control over the creation of our beliefs is wielded by anyone with a way to get repeated messages to us; media owners, teachers or our own selves.

Emotions power the drill. Any emotion will work. The stronger the feeling, the more drill power. An ad that annoys you works fine. So does one that’s burns with sex and longing.The bigger the hole in your bucket, the more similar information is allowed in.

We live immersed in repetitive marketing messages. We smell marketing messages when a deep fryer or bread oven vents into the grocery store. Our world of paid advertising drills our holes and hones our beliefs for us.

Here’s something to keep in mind about this head-bucket reality-filter of ours. Each one of us believes that we are more immune than other folks to the big-bucks marketing; too smart, too self-aware or too quick on the mute button to be effected. I thought so, too.

And we may mistake our filter holes for the truth. I have.

People have products to sell.  The people that own the marketing drills sell access to those drills.

We’ve voted away government money for medical research and teaching hospitals. These are now funded with pharmaceutical dollars. Selling out medical research and education to drug companies would be like letting fast food chains feed our kids in school cafeterias or allowing them to pay for our text books. This would create a public health nightmare.

When you talk to a psychiatrist, remember that the high-end drills have been there ahead of you. There may be no hole through his bucket for your shape and size of message. You’ll have to change the shape, size, direction or velocity of your information. It still might not get through.

Please. Remember that you wear a filter-bucket on your head too. Your belief holes were mostly drilled for you by others. Some of the holes in your bucket could be a little off. Mine were. I’m sure that some of mine still are.

How could I not have known?

The real question is: How could I have known?
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After already becoming involved in reform efforts personally, I decided to seek to bring together colleagues, psychiatric survivors, and others interested in changing the mental health system. May 9, 2006, I brought this together with the vision of developing a low fee clinic, therapeutic community project, holding educational lectures and workshops, and educating the public through literature and media. After these 6 years, we have accomplished all of these things. In collaboration with my colleagues here in Northeast Pennsylvania, we have offered assistance to those undergoing extreme states where they may also receive acupuncture and massage therapy in conjunction with psychotherapy, and we have made these services affordable and accessible. In 2010, I actually had some clients who resided in the area and we established a brief, but rewarding therapeutic community setting. The Center was also involved in pro bono work for a Prozac involuntary intoxication case and have helped support many in being able to come off of psychiatric drugs and come to true resolution. Last year, the Center became a research center of European-American University. There are now plans to investigate temple healing in India at a temple where those undergoing extreme states reside. These settings appear highly successful for these individuals, and it is necessary to collect stories and information on what exactly is helpful.  As part of the Center’s work, there has also been a focus on autism acceptance and understanding and to encourage relationship based approaches. I found that many of the organizations claiming to speak for autistic persons had no autistic persons involved, so it has been of importance to work alongside autistic persons and make sure that they are validated in their experience and their voices heard.

I am pleased that these past 6 years, though certainly not without struggle from the establishment and also from the so called “establishment critic Gurus”, has been filled with many joyful accomplishments. I am aware that the entire system cannot be changed by a few overnight, but I know that we have made powerful differences in the lives of those we have been privileged enough to journey with.

These are the principles that the Center seeks to carry forward:

Our work is to fight against oppression and coercion in the mental health system, to eradicate the hierarchical barriers between ‘doctor and patient’, to eliminate the medicalization of emotional distress, and to develop means of helping distressed persons where their autonomy, experience, and dignity is respected. We seek to return a conscience to the field of mental health and create an environment where people undergoing distress feel validated, empowered, and capable.

We believe in the power of the human spirit and each person’s potential to be resilient. We believe that the forging of relationship is a key to emotional healing as well as the ability to help a person explore themselves, their world, society, and the human condition. We we seek to join with people in setting life goals, understanding the human condition and experiences without looking upon the person as defective. ICHP encourages involvement in issues related to social justice and believes that our working together to create a world free from poverty, greed, conflict, and discrimination will go a long way towards the development of true mental health.

We seek to be pro-active and preventative in our care for persons. We promote drug free, relationship based approaches for troubled and distressed children and adults and encourage the development and implementation of community based programs. We advocate for juvenile justice reform and for an education system that inspires a zeal for learning and is respectful of children’s innate strengths and abilities. We believe in the development of community based options. We are opposed to force and coercion in the mental health system.

We seek to provide a place of sanctuary for people in crisis or undergoing extreme states of mind, where they can feel supported and validated, and not be subjected to any ‘treatments’ they do not desire. We believe distressed people thrive in environments that are non-threatening and they feel safe.

We collaborate with and offer consultation to parents, educators, and children and their families to develop relationship based approaches and problem solving towards resolving issues of distress, realizing that people are resilient and capable of healing from distress. We have been successful in helping individuals not have to resort to psychiatric drugs or to be able under the direction of their physicians significantly reduce their use.

We believe the key to this healing is by the forging of relationship and the construction of meaning. We believe that compassion is one of the highest ideals. We believe that psychiatric drugs do not teach new ways of living, thinking, loving, and being, whereas people do. We are particularly concerned about the vast prescribing of psychiatric drugs (many which carry warnings of suicidal ideation, violence, agitation, and aggression) upon individuals’ well being. We are concerned about the unethical conflicts of interest existing between medical psychiatrists and the pharmaceutical industry.

We seek to provide to those individuals undergoing serious distress a place where they feel safe, secure, and can begin to begin the process of discovery and overcome fear and emotional chains.

We do not feel that locking individuals away in institutions solve human problems, rather it is through compassion, empathy, and seeking to understand our human condition that true mental health will arise. We believe that placing persons in mental hospitals is equivalent to incarceration however the distressed person has committed no crime, rather they are subject to a psychiatric ceremonial where the pschiatrist seen as ‘sane’, interrogates the person, makes a judgment, and then declares a sentence. We believe that psychiatric diagnosis often stigmatizes and limits opportunity for individuals. We believe that modern society is driving people ‘mad’ and that we must have radical transformation of ourselves and our values as well as return to a greater sense of community. We believe those who call themselves therapists must be actively involved in issues of social justice, helping end oppression and encourage liberation for marginalized persons. We recognize that distressed individuals must be treated as persons with respect and dignity. We believe in recognizing that even the most troubled persons and families have innate strengths. We believe that persons need to be given informed consent and not seen merely by a diagnostic label. We believe that ethics must proceed technology. We believe that bio-psychiatry has often used brutal methods (such as electroshock, insulin coma, toxic drugs, and lobotomy) and has evoked much harm in the lives of individuals and does not provide any true answers to the problems of life. We believe that there is no objectivity and science to the process of psychiatric diagnosis and that those diagnosed are often stigmatized and oppressed in society by virtue of this label.

We encourage drug free relationship based, problem solving, and holistic approaches and encourage individuals who choose to use helpful adjuncts such as meditation, acupuncture, tai-chi, and yoga. The International Center for Humane Psychiatry is one of few entities taking a strong stand on social justice issues and seeking to create a mental health system that does not treat people as objects, but persons.

We believe that it is also necessary for us to assume personal responsiblity and accountability for own own actions and choices and to not resort to the use of or embracing of labels to exonerate ourselves and institutions.