Tags: Alex Gorsky, antipsychotics, childhood bipolar disorder, Dr. Joseph Biederman, Johnson & Johnson, Medicaid fraud, Risperdal, schizophrenia
To paraphrase a recently released pharmaceutical industry investment report, your 10 year antipsychotics money-making forecast is as follows: partially cloudy skies in 2011 will give way to full sun by 2021.
In other words, antipsychotic patent expirations will be tempered by the emergence of new BLOCKBUSTER antipsychotic drugs, and investors can expect to make a PILE of money by 2021.
The 208 page report, produced by the market research firm of Decision Resources, goes on to make the following predictions:
- sales for schizophrenia therapies will drop from $7.4 billion in 2011 to $6.5 billion in 2014 in the developed world, as people switch to newly available generics
- the launch of new drug therapies will increase profits thereafter to $8 billion by 2021
- these will include glutamine reuptake inhibitors, which will be marketed as “adjuncts” to antipsychotics which address the so-called “negative” symptoms of schizophrenia (apathy, catatonia, low self-esteem, etc.) and are expected to achieve blockbuster status
- also included are injectable atypical antipsychotics, sales of which will more than double from $1.4 billion in 2011 to $3 billion in 2021
Well, I’d like to try my hand at a little forecasting myself. In order for those 8 billion buckaroos (or more!) to find their way into the right pockets, I expect we’ll see:
- Heavy recruitment of key “opinion leaders” by pharma, supposedly unbiased researchers and clinicians whose endorsements for pharma products are bought and paid for by way of massive bribes (er, I mean funding) for “research” with predetermined outcomes, specifically designed to promote pharma’s commercial interests.
- A whirlwind of publications promoting the use of long-acting antipsychotic injections, glutamine reuptake inhibitors, the need for polypharmacy in the treatment of schizophrenia, or any combination therein
- A concerted effort at a.) expanding the members of the population that could be construed as suffering from so-called “schizophrenia” b.) expanding the list of other uses for these drugs, including any and all known or as-yet-unknown “diseases” and “conditions” (even if they must be created out of thin air) and c.) further ingraining the idea that conditions which require the use of these drugs are serious, chronic, and require probably lifelong use of patented medications – no generics, please!
- If required by the myth-building machine that will lay the foundation for the forthcoming BLOCKBUSTER drugs, paradigm shifts away from currently accepted ideas (perhaps the general public’s abhorrence of forcibly injected, mind-altering drugs? Or a sly admittance that the whole “dopaminergic” hypothesis regarding the biological cause of schizophrenia was, perhaps, maybe, incorrect?)
The logic behind this forecast is simple: it’s exactly what was done by pharmaceutical companies to promote blockbuster atypical antipsychotics 10 years ago. And why get creative when the scam worked so well the first time around?
The scam that worked so well
A lot of internal documents never meant for public eyes have come to light in the recent litigation against Johnson & Johnson for Medicaid fraud and the off-label marketing of RISPERDAL. Two delightful samples will be dissected below:
- The full deposition of Alex Gorsky, current CEO of Johnson & Johnson (makers of RISPERDAL), recorded in May, 2012 as part of the national RISPERDAL litigation.
- The Annual Report (2002) of The Johnson & Johnson Center for Pediatric Psychopathology at the Massachusetts General Hospital, a research center that presented that was charged by their funders (J&J) to produce specific research outcomes that would support the commercial goals of the company. This a report from the Center to its funders on their progress towards these goals.
Early in Gorsky’s deposition, we learn that the Johnson & Johnson Center for Pediatric Psychopathology at the Massachusetts General Hospital, headed up by Dr. Joseph Biederman, was established by a grant from J&J and its affiliates for $500,000 in 2001. The center was described in an internal J&J email as “a great way to get the word [about RISPERDAL] out to a big part of the child and adolescent prescribing community.” This was a full 5 years before Risperdal was approved for pediatric use.
And if the name “Joseph Biederman” sounds familiar, that’s because Biederman is commonly acknowledged as the originator of the idea that childhood bipolar disorder is, in fact, a widespread pediatric disease which must be aggressively treated with medications, specifically antipsychotics. His turn-of-the-millennium publications with Janet Wozniak are credited with jumpstarting the 4000% increase of this diagnosis in children.
More recently, Biederman gained notoriety for some seriously scandalous behavior: he guaranteed J&J company representatives favorable outcomes for a 2005 trial of RISPERDAL in preschoolers. This did tarnish his reputation a little, but by no means did it motivate any of the institutions for which he works (Harvard Medical School, Massachusetts General Hospital) to dismiss him.
What you’ll see in the documents below is that 2005 was not the beginning of Biederman’s agreement with J&J to produce favorable results validating the research conclusions they specified in advance; that’s been going on at least since 2001, and perhaps earlier.
And what exactly did Johnson & Johnson want him to prove? That there is such a thing as childhood bipolar disorder. It’s a brain disease, likely chronic, that requires lifelong medication adherence. And most importantly: kids need to be taking RISPERDAL.
From the Annual Report (2002) of The Johnson & Johnson Center for Pediatric Psychopathology at the Massachusetts General Hospital
An essential feature of the Center is its ability to conduct research satisfying… [certain] criteria…. [including that] it will move forward the commercial goals of J&J.
Considering that nearly all psychiatric medication use in children is off label, studies of safety and efficacy in children are essential for clinicians, parents, and patients to feel comfortable using these medications in children… Equally important to effective use of medications is the demonstration of the validity of disorders. Because parents, patients, and clinicians are exposed to a media that frequently questions the validity of childhood disorders, genetic and brain imaging studies are needed to show the validity of these disorders as brain disorders that respond to medication. Epidemiologic studies are needed to show that childhood disorders are frequently chronic and severely debilitating. Without such data, many clinicians question the wisdom of aggressively treating children with medications, especially those like neuroleptics, which expose children to potentially serious adverse events….
Through the funding provided by J&J, we [the J&J Center for Pediatric Psychopathology] are creating a team of investigators focusing on the following issues:
We will generate and publish data on the efficacy and safety of medications for improving currently available treatment options for child psychopathology. This work is an essential precursor to the … widespread use of medications given that most must be used off-label.
From the deposition of Alex Gorsky, CEO of Johnson & Johnson (makers of RISPERDAL)
[by the way, Gorsky is positively the most skilled waffler I have ever encountered! Twice in the deposition he admits to having given the opening address at a meeting (it was, unfortunately for him, noted in the agenda), but can't recall having been there or any of the other things said, and even goes so far to suggest that he may have given the opening address but then, somehow... left. Maybe he was the guy they sent to pick up lunch...]
Scientific “research” to further Johnson & Johnson’s commercial aims
Q. You see this document is called “Annual Report 2002: The Johnson & Johnson Center for Pediatric Psychopathology at the Massachusetts General Hospital“?… And the director is Joseph Biederman, M.D., whom we’ve spoken about a couple times today, right?
Q. Let’s turn to page 861, please, Mr. Gorsky, which is it is executive summary of the annual report. The first sentence of the overview says that “The mission of the Center is…a strategic collaboration between Johnson & Johnson and the Pediatric Psychopharmacology Research Program at the Massachusetts General Hospital.” Is that correct?
A. Yes, that’s what it says.
Q. Let’s turn to the next paragraph, Mr. Gorsky. It says, “An essential feature of the Center is its ability to conduct research satisfying three criteria. . .” Did I read that right?A. Yes.
Q. And if we look at the third criteria, it says “it will move forward the commercial goals of J&J.” Is that correct?
[…Gorsky tries and fails to avoid answering this question. Finally…] A. Yes.
Q. So, this annual report from the Johnson & Johnson Center For Pediatric Psychopathology from 2002 admits that information and research from this supposedly unbiased research center is to benefit the business of sales for Johnson & Johnson. Is that correct? … And commercial goals would include sales of pharmaceuticals. Is that right?
A. Yes, it would.
Promoting the widespread use of medication, specifically RISPERDAL, in children
Q. Okay. And then if we look at the next sentence from the annual report, it says “We strongly believe that the Center’s systematic scientific inquiry will enhance the clinical and research foundation of child psychiatry and lead to the safer, more appropriate and more widespread use of medications in children.” Did I read that correctly?
A. Yes, you did.
Q. So…one of the goals of this center’s inquiry is to lead to the more widespread use of medications in children. Is that right?
A. […extensive verbage from Gorsky, followed by…] yes.
Q. … Mr. Gorsky, let’s look at the next sentence, where it says “Considering that nearly all psychiatric medication use in children is off label. . .”
Q. Do you see that?
A. Yes, I do.
Q. And that would include Risperdal because in 2002, I think we’ve already agreed, Risperdal was not approved for use in children and adolescents. Is that right?
A. Based upon our earlier conversation, it did not have the specific indication at that time, that’s correct.
Producing lifelong RISPERDAL customers
Q. And it [the J&J Research Center’s 2002 Annual Report] says — and this is interesting — “Showing how pediatric mania evolves into what some have called mixed or atypical mania in adulthood will provide further support for the chronic use of RISPERDAL from childhood through adulthood.”
Do you see that?
A. Yes, I do.
Q. So, one of the specific goals of the center is to show that pediatric mania will evolve into mania in adulthood, which will then require the chronic use of Risperdal from childhood to adulthood. Is that right?
A. […much waffling, and then…] I think if that was the goal as outlined, that was a reasonable research objective.
Q. And the continuation of Risperdal from childhood to adulthood would be one of those –remember back in the beginning of this document we saw the word there were commercial goals of Johnson & Johnson, right?
A. Yes, I did see that.
Q. All right. And the continuation of a Risperdal prescription from a young man or young boy through adulthood would be a commercial goal of Risperdal, right? Or of Johnson & Johnson, I’m sorry.
A. Successful treatment of patients, if they were responsive on the medication, for them to stay compliant on the medication would be one of our goals, but only if the drug was working and the patient was living better.
Q. So, the way I interpret this is that Johnson & Johnson and Massachusetts General Hospital and Dr. Biederman are collaborating to validate a lifetime use and treatment with Risperdal. Is that correct?
Where have all the prophets gone? (Part Two) 06/19/2012Posted by ALT in Philosophy/Spirituality, Psychosis.
Tags: collective unconscious, dry bones, Ezekiel, Far Side of Madness, John Perry, prophet, psychosis, schizophrenia, visionary
[read Part One here]
(New International Version)
The hand of the Lord was on me, and he brought me out by the Spirit of the Lord and set me in the middle of a valley; it was full of bones. 2 He led me back and forth among them, and I saw a great many bones on the floor of the valley, bones that were very dry. 3 He asked me, “Son of man, can these bones live?”
I said, “Sovereign Lord, you alone know. ”
4 Then he said to me, “Prophesy to these bones and say to them, ‘Dry bones, hear the word of the Lord! 5 This is what the Sovereign Lord says to these bones: I will make breath [in Hebrew, the word also means “spirit”]enter you, and you will come to life. 6 I will attach tendons to you and make flesh come upon you and cover you with skin; I will put breath [spirit] in you, and you will come to life. Then you will know that I am the Lord. ’”
7 So I prophesied as I was commanded. And as I was prophesying, there was a noise, a rattling sound, and the bones came together, bone to bone. 8 I looked, and tendons and flesh appeared on them and skin covered them, but there was no breath in them.
9 Then he said to me, “Prophesy to the breath; prophesy, son of man, and say to it, ‘This is what the Sovereign Lord says: Come, breath [spirit], from the four winds and breathe into these slain, that they may live.’” 10 So I prophesied as he commanded me, and breath entered them; they came to life and stood up on their feet—a vast army.
11 Then he said to me: “Son of man, these bones are the people of Israel. They say, ‘Our bones are dried up and our hope is gone; we are cut off.’ 12 Therefore prophesy and say to them: ‘This is what the Sovereign Lord says: My people, I am going to open your graves and bring you up from them; I will bring you back to the land of Israel. 13 Then you, my people, will know that I am the Lord, when I open your graves and bring you up from them. 14 I will put my Spirit in you and you will live, and I will settle you in your own land. Then you will know that I the Lord have spoken, and I have done it, declares the Lord. ’”
This was the text for the sermon I heard at the church of my childhood, a few weeks ago. I had never encountered this story before, and it floored me.
What powerful imagery, and how relevant to our times! A valley of dry bones, the people dead and desiccated, no breath to enliven them… until the Spirit reclaims them. And I was struck – thunderstruck, really — by the fact that Ezekiel’s vision bears a striking resemblance to the visions experienced by many during a so-called “psychotic episode”: death and destruction, an Apocalypse, the voice of God, a rebirth.
In The Far Side of Madness, John Perry proposes a series of interrelated archetypal images/ideas that consistently make an appearance in the psychotic process (though not necessarily in a linear fashion):
A. Center – A location is established at a world center or cosmic axis
B. Death – Themes of dismemberment or sacrifice
C. Return to beginnings
D. Cosmic Conflict – a battle between good and evil
E. Threat of Opposite
F. Apotheosis - direct communication or identification with God
G. Sacred Marriage
H. New Birth
I. New Society/a New Age
J. Quadrated World – a fourfold structure of the world or cosmos
(from John Weir Perry’s Far Side of Madness)
Perry illustrates, with numerous case studies, the amazing regularity with which these features appear in psychotic processes. Ezekiel’s vision contains many of them: death (dismemberment), cosmic conflict, apotheosis, new birth (the bones and flesh made alive), and quadrated world (breath “from the four winds”). The book of Ezekiel, an account of Ezekiel’s seven visions from God, contains them all.
The idea that some [not all] psychotic processes are spiritual in nature, and serve (in part)* to convey a message from the divine, is an old one. In fact, in many traditional cultures, it was and is the dominant interpretation of these experiences.
But in our culture, the idea that psychosis/the visionary process has value for the individual experiencing it and the community to which he belongs is downright revolutionary!
On the micro level — the individual — it is valuable as
a self-healing process – one in which, specifically, the pathological complexes dissolve themselves. The whole schizophrenic turmoil is really a self-organising, healing experience.
-John Weir Perry, in this interview
But there is an analog at the macro level, the level of the community, that is equally important:
Our new understanding shows that the process of re-connection to the Unconscious [psychosis]… is nonetheless made up of the same stuff as seers, visionaries, cultural reformers and prophets go through. They also experience much of the same content, except that in their case it is specifically concerned, first and foremost, with the culture itself.
Any kind of therapy that deals with the psyche at this deeper level of the collective unconscious, one comes to the inevitable realisation that we are not going along in our psychic life, you know, just in a realm of interpersonal relationships. A very powerful culture such as ours projects huge patterns, huge conflicts and turmoils, and we all experience them, although we may not be conscious of their inner meaning at all.
In this sense, Humankind is still enormously alienated; the point is, it doesn’t happen just in Washington and Moscow – it happens within the psyche of the whole people…
This brings up the question of myth-form. You see, the big problems facing society are perceived in symbolic, mythic expression, and for this reason their resolution takes place on the symbolic, mythic level as well. If there’s work going on in a culture to reorganise itself, then it’s a process that must occur on both levels simultaneously: individuals will go through their personal visions, and collective spokesmen will express collective visions, which get worked out and implemented on a cultural level.
- John Weir Perry, in this interview**; emphasis added
Where have all the prophets gone?
Does this culture have problems of epic proportions facing it? I would say: YES. Are we in need of reorganization, a drastic reordering of priorities, some serious soul-searching? Again, my opinion – YES.
And is it possible that somewhere in the vast expanse of humankind exists a visionary, one who will journey across an archetypal landscape and bring back to us a spiritual message, a breath of life to the dry bones of our culture of death?
Will we listen?
Or will we label (as psychotic) and medicate (with “anti-psychotics”) until that voice grows silent?
* They also serve as a process of self -reorganization, psychic re-invention.
** More from John Perry on these ideas in this excellent video interview, recently uploaded to YouTube (!):
Tags: biopsychiatry, brain disease, diagnosis, DSM-5, New England Journal of Medicine, psychiatry, schizophrenia
1 comment so far
I heard the rumors of a fight, and I came a-running.
This morning, I read [here] that the following inflammatory remarks were published in this week’s New England Journal of Medicine:
… [Only when psychiatrists address] psychiatric disorders in the same way that internists address physical disorders, explaining the clinical manifestations … by the causal processes and generative mechanisms known to provoke them … will psychiatry come of age as a medical discipline and a field guide [the DSM – Diagnostic and Statistical Manual] cease to be its master work.
- Paul McHugh, MD and Phillp Slavney, MD in the NEJM [emphasis added]
Damn, that’s cold. And did I mention it was published in the New England Journal of Medicine (!), which is “one of the world’s most prestigious medical journals… cited in scientific literature more frequently than any other biomedical journal”? All kinds of doctors, clinicians, and practitioners read this thing!
A big deal.
Sounds like the authors are saying mental illness is fundamentally NOT like diabetes, that psychiatry as a discipline will continue to suffer from its immaturity and crippling inferiority complex (“we wanna be scientists, too!”) as long as diagnosis doesn’t rest on a firmly established foundation of physical pathology, and that the DSM is a poor substitute for that kind of a foundation.
Them’s fighting words. Words that might make the NEJM readership think twice before handing out diagnoses and their accompanying pharmacological interventions like the proverbial candy.
Don’t believe every rumor you hear
Having matured a bit from my high school days of running directly to join the ring of kids chanting “fight, fight, fight!”, I decided to get a little context. Who are these guys -– researchers? psychiatrists? some other kind of doctors? — and what does the rest of their NEJM editorial say?
“These guys” are two psychiatrists, professors at the Johns Hopkins School of Medicine. Paul McHugh, the lead author, is a rather famous one. He’s attended Harvard, designed a famous cognitive test often used as a dementia/Alzheimer’s diagnostic tool (a mere 11 questions!), served on the Presidential Council of Bioethics under GW and on a lay panel put together by the Catholic Church to look into the abuse of young boys by priests – none of these things being very high recommendations in my book. The two, together, have written a popular paperback for the general public entitled The Perspectives of Psychiatry which takes the biopsychiatric/disease-based approach to mental health.
And their editorial? It starts off very nicely with a critique of the DSM-delineated “field guide” method of diagnosis – the main problem being that clinicians no longer think too long or hard about causation. This promotes a “rote-driven” method of treating folks, and as the authors so rightly state “identifying a disorder by its symptoms does not translate into understanding it.” Or treating it effectively, if long-term studies of schizophrenia outcomes are any indication.
But things go sour real fast as we get to the “what’s to be done about it” part. We simply must establish causation for psychiatric disorders, and – guess what?—the authors have already done that!
The causes of psychiatric disorders derive from four interrelated but separable families: brain diseases, personality dimensions, motivated behaviors, and life encounters.
-McHugh et al.
They have also helpfully sorted out some common psychiatric disorders into the four families, or “causal perspectives”:
Right there, in the NEJM (remember – prestigious medical journal read by everybody), we’ve got schizophrenia neatly categorized as “brain disease.”
I diagnose thee… Flipfloppers!
Contrast the NEJM editorial with the polite phrasing the authors used in the aforementioned co-authored The Perspectives of Psychiatry, chapter 6:
The continuing failure to identify a particular cerebral pathology or pathophysiology in these disorders [manic depression and schizophrenia] undermines attempts to proclaim them as diseases with complete confidence. They remain mysteries in the sense that a confirmation of their essential nature is lacking…
- authors Paul McHugh, MD and Phillp Slavney, MD in The Perspectives of Psychiatry [emphasis added]
And yet they feel comfortable, only a few years after these words were published, with proclaiming schizophrenia as a “brain disease,” without providing any citations for new, groundbreaking research whatsoever. Clearly this “DSM critique” is not what it seems.
Middle way protestors all the way
As it turns out, these guys are total middle way DSM protestors – the only thing they’d like to fight is the bad public image of the DSM, not the institution of psychiatric diagnoses masquerading as science, and all of the poor treatment that goes along with such posturing (symptom suppression via pharmaceuticals, coercive treatment, et al.).
According to McHugh and Slavney, “no replacement of the criterion-driven diagnoses of the DSM would be acceptable; clinicians are too accustomed to them.” Rather, the only solution is for everyone [clinicians, researchers, families, patients] to embrace their causation groupings – and for that to be coded and billable, too, one can only presume.
In no other field would you continue to reach for an admittedly blunt, ineffective tool simply because it’s “what people are used to.” Surely there are some other possiblities?
I believe that there is another way – instead of fitting people and their “symptoms” into predetermined boxes, we could communicate with each unique individual, offering our support and encouragement (help) when it’s wanted, and offering our respectful non-interventionism and acknowledgement of the humanity of the suffering individual when our “help” is neither helpful nor desired.
I believe there is life after the DSM – and I’d like, as a society and a community, to live it!
Tags: anatomy of an epidemic, antipsychotics, intramuscular medication, Janssen, long-acting injection, Risperdal, robert whitaker, schizophrenia
In honor of Robert Whitaker’s recent kick-ass article beautifully re-affirming the central premise of Anatomy of an Epidemic (namely that anti-psychotic medications worsen long-term outcomes for patients, making schizophrenia into a chronic, lifelong disease when in its natural state it is episodic; and therefore that patients who refuse treatment with antipsychotics are scientifically justified in doing so), I thought we might launch our own little expedition into the stormy seas of antipsychotic/neuroleptic discourse.
I’m steering us straight towards the tempest, towards the ever-blurrier line between “compliance,” “adherence,” and outright “forced treatment,” towards a history of Orwellian language shift that simply can’t seem to shake the truth.
Long-acting injections of antipsychotic medication
Long-acting injections are monthly, time-released, intramuscular injections of antipsychotic medications. They figure prominently in current “assisted outpatient” therapeutic practice (ie, forced drugging outside the walls of the psychiatric institutions), and are being heavily promoted by drug companies who see expiration dates on patents for oral antipsychotic medications looming in the near future or already arrived. Can the pharma marketing machine succeed in making LAIs the next wave of antipsychotic blockbuster drugs?
It’s going to take a serious makeover. You see, long-acting injections have got something of a “bad image” in the press, and in the hearts and minds of the people. Perceived as brain-altering drugs violently administered to unwilling subjects, clinicans’ last resort to enforce adherence to an un-agreed-upon reality [treatment plan], a hideously efficient way for pharma to make a buck or two [hundred].
But is this really a case of “bad image”, of misperception… or is it an accurate appraisal of long-acting injections’ intended and fully acknowledged clinical applications?
As clinicians we struggle on a daily basis with patients who do not want treatment because they do not perceive that medication helps or because they do not conceptualise their experiences within a medical illness framework. Long-acting injections have often been used to enforce adherence in patients who do not or will not take medication; they can be a mechanism allowing clinicians to take control.
-Richard Gray, RN, PhD*in “Antipsychotic long-acting injections in clinical practice: medication management and patient choice” [emphasis added]
According to systematic reviews approximately 40–60% of patients with schizophrenia are known to be partially or totally non-adherent to oral antipsychotic medication. Long-acting injections are indicated where medication adherence is a cause for concern. Thus it is argued by some that it might seem reasonable to consider such injections for approximately half of patients with schizophrenia.
- authors Maxine Patel, Mark Taylor and Anthony S. David** in “Antipsychotic Long-Acting Injections: Mind the Gap” [emphasis added]
Yep. We had you guys all wrong. This isn’t about forcing patient adherence to clinicians’ treatment plans, and it certainly isn’t about expanding the market for LAIs.
Funny thing. “Long-acting injections,” when first introduced in the 1960s, were referred to as “depot injections” … but the name acquired a strong stigma and had to be changed:
Many proponents of LAIs [long-acting injections] have attempted to dodge this [image problem] by rejecting the term ‘depot,’ which was perceived to be stigmatizing, in favour of ‘long-acting injection’ … this was partly an attempt to move away from stigmatizing stereotypes, and also to promote therapeutic optimism for a population for whom hope can be all too scarce.
- Patel et al in “Antipsychotic Long-Acting Injections: Mind the Gap”
As late as 2008, long-acting injections of Risperidone were still being called “depot” injections, but by 2009 articles like the one cited above made clear that this terminology had been abandoned.
But they couldn’t shake the stigma
Not only that, but serious, data-based challenges to the forced administration of long-acting injections –- and, more fundamentally, the existence of any clinical value for antipsychotics whatsoever — are rapidly multiplying. As one example:
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 [citation here] 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?
-Robert Whitaker, author of Anatomy of an Epidemic, in the aforementioned kick-ass essay
From pharma’s perspective, another Orwellian language shift is needed. Time to reset the dial of public opinion on long-acting injections… and so I give you the newest name for an old terror:
That does sound better! It doesn’t make me think of needles. Doesn’t even sound like an injection… sounds more like a “muscle relaxer,” only more intra.
I first saw the term a few weeks ago in Dr. H. Steven Moffic’s delightful little Psychiatric Times blog entitled “Is it time for Re-institutionalization?”
Recently, I was asked to write a request to possibly extend the outpatient commitment of a patient of mine. What for, I said to myself? This would be a waste of time because he had not exhibited any more dangerous behavior, was taking care of himself, and was compliant with his intramuscular medication. However, when as part of the ongoing monitoring of my patient’s improvement, I asked him to rate on a 0-10 (best) scale how well the medication was working, he said “0”. When I asked why, he said it was because he didn’t need the medication. Uh, oh, I thought. Could this be Anosognosia?…
There’s no way he’ll be committed longer, but will he stay on the medication voluntarily? Without it he’d surely relapse into psychosis and possible dangerousness. If he then went inpatient again, would he only stay a few days, not enough to address his ideas about the medication? It didn’t help enough the first time around.
-Dr. Steven Moffic
But it’s cropping up elsewhere, too – in the academic literature, and in drug company advertising materials, of course. You can even see the shift in brand names as new antipsychotic injections are approved over time; the earliest approved LAI, Janssen’s Risperdal, is frequently referred to as LARI [Long-acting Risperidone Injection], while the more recently approved Zyprexa injection’s official brand name is “Zyprexa Intramuscular.”
I forecast the increasing encroachment of the term “intramuscular medication” into the official, APA/pharma-approved, “therapeutic” language, until our fears of “long-acting injections” are a half-forgotten nightmare that no longer sees the light of day.
Or we could insist on calling a spade a spade.
So-called “antipsychotics” are nothing of the kind (they’ve actually been shown to cause psychosis), and are much more appropriately referred to by their first given name, neuroleptic, which literally means “brain damage inducing.” Why? Because that is what the research proves, over and over again, they do.
From now on let’s choose names that accurately describe the items to which they’re attached. For example, “rose” = a pretty flower that smells good. A few other examples:
Intramuscular Medication = Neuroleptic (brain damage inducing) Injection
Non-compliant Patient = Conscientious Objector to the Chemical Takeover of His Mind
That sums it up pretty clearly, doesn’t it?
* (Oh, and by the way, Richard Gray has received funding and/or fees from AstraZeneca Pharmaceuticals, Bristol-Myers Squibb, Janssen Pharmaceuticals, Eli Lilly, Otsuka Pharmaceuticals and Pfizer.)
** (And it should come as no surprise that the authors have been reimbursed for attendance at scientific conferences and have received consultation fees from Janssen-Cilag and Eli Lilly, received investigator-initiated grants from Janssen-Cilag and Eli Lilly, have worked on two clinical drug trials for Janssen-Cilag, and have received hospitality and advisory or speaker fees from AstraZeneca, Bristol-Myers Squibb, Eli Lilly and Janssen-Cilag within the past 5 years.)
Dystopian Dreams of a World Without the DSM 05/15/2012Posted by ALT in DSM-5, Patient Rights and Advocacy, Philosophy/Spirituality.
Tags: APA, biopolar disorder, diagnosis, DSM-5, eugenics, mental illness, psychiatry, schizophrenia
A world without psychiatry’s “Bible,” the DSM [Diagnostic and Statistical Manual]. I can see it now…
In this world, much like our own, there is still suffering. There is still poverty, crime, crushing sadness, despair. There is still violence. Regrettably, there may even still be some people who choose to take their own lives, preferring death over the pain of the moment.
But things are a helluva lot better in this world. Not perfect, mind you. Nevertheless a far more hospitable place for humans to be (in distress or not).
Not a utopia
I don’t promise you a utopia, because I have learned that utopian thought is always a trap. It inevitably leads to State supervision of, well, everything. We’ve got to maintain that perfect agreement about what constitutes the perfect order, right? At any cost. Moreover, utopian thought requires the mechanization (and consequently dehumanization) of the culture, the community, the human beings involved therein.
A feature of nearly all utopias has been addiction to elaborate social machinery like schooling and to what we can call marvelous machinery. Excessive human affection between parents, children, husbands, wives, et al., is suppressed to allow enthusiasm for machine magic to stand out in bold relief…
All machines are merely extensions of the human nervous system, artifices which improve on natural apparatus, each a utopianization of some physical function. Equally important, the use of machinery causes its natural flesh and blood counterpart to atrophy, hence the lifeless quality of the utopias. Machines dehumanize, wherever they are used and however sensible their use appears. Yet the powerful, pervasive influence of utopian reform thinking on the design of modern states has brought utopian mechanization of all human functions into the councils of statecraft.”
- John Taylor Gatto in “The Lure of Utopia”
So I give you, instead, some dystopian dreams of a world without the DSM.
In this world…
Psychiatrists, as a profession, en masse, have admitted: WE WERE WRONG.
“We shouldn’t have done it,” they will humbly concede. “We shouldn’t have insisted it was a fact that the ‘disorders’ we outlined in the DSM were objective, scientific, distinct pathologies (just like diabetes!) when we had virtually no proof of that. We shouldn’t have told our patients that they had ‘faulty genes’ or ‘faulty brains,’ that they were doomed to suffer chronically, for the rest of their lives, from the effects of chemical imbalances of neurotransmitters in their heads when we literally had no way of measuring balances of neurotransmitters [in the brain] in the first place, no way to establish a baseline for what is ‘normal’ and what is not.
And we certainly shouldn’t have partnered with drug companies, we shouldn’t have accepted their bribes, their promises of prestige and honor, allowing them such tremendous influence over the development of the diagnostic criteria. We shouldn’t have turned a blind eye to the terrible, terrible harm the pharmaceuticals they were so enthusiastically peddling were doing to our patients, to our communities. We should’ve looked further than the drug company-sponsored ‘research,’ we should’ve listened to what our patients were telling us, the facts that were staring us in the face, if only we were willing to take off the blinders so kindly provided us in our years of PhD training in pharma-sponsored schools and research hospitals.
Folks, we were wrong, and we’re deeply sorry for the harm we’ve caused. We’d like you to send back your DSMs (don’t worry, we’ll cover the postage), so that we can dispose of them in a safe and secure manner.”
(Dumping them down the drain, so to speak, simply won’t do.)
Now, as my significant other likes to say, there are three kinds of apology:
Type One: “I’m sorry you didn’t like it, but I fully intend to do it again.”
Type Two: “I’m sorry it happened, but it wasn’t really my fault.”
Type Three: “I’m sorry I did it, I take full responsibility for my actions, and I will make sure not to do that again.”
This will be a full-on, Type 3 apology, and it’s going to force all psychiatrists to ask of themselves some very serious questions about their profession, their practice, their beliefs about humankind. The self-proclaimed “soul healers” are going to do some critical thinking and some soul searching (like this). With humility and a greater sense of empathy, many (but probably not all) will emerge on the other side, repentant, contrite.
We move forward, having abandoned the purely “biopsychiatric” approach to mental illness, with a renewed commitment to seeing mental distress and madness for what they are (instead of trying to fit them to a biopsychiatric model that was flawed from the start, given its roots in pharmaceutical marketing campaigns, NOT actual observation of the process).
We move forward.
Our cultural narrative about mental distress has fundamentally changed.
Once this monumental apology has been issued, the books sent back, the labels redacted, “bipolar disorder,” “schizophrenia,” and “dysphoric mood disorder” won’t exist anymore as such. [oh wait, I guess Dysphoric Mood Disorder doesn’t quite exist yet… well, give it time, give it time.]
But there will still be people convinced of the coming apocalypse, walking circles around the city at night with visions of destruction surrounding them. There will still be children throwing terrible tantrums day in and day out. There will be racing thoughts, deep depressions, panic attacks; there will also be euphoria, epiphanic realizations of the oneness of humanity, creation, deep outpourings of love and spiritual healing.
Yes, there will still be “extreme states of consciousness” – some of which will be quite distressing to the people who experience them.
But our cultural narrative explaining the presence of such extreme states will have changed dramatically. When they are no longer catalogued “symptoms” of a fearsome “disease” that some people get and some people don’t, but just one part of a vast spectrum of human experiences possible to all humankind, it will no longer be feasible to adopt an us and them mentality.
“Mental illness” as the “bad genes” of “unfit stock” manifested? Not anymore. We weed out our old eugenical ideas about “the mentally ill,” roots and all (and that includes the idea that there exists a class of people called “the mentally ill” and another class called “the normal” and that the one is fundamentally different from and dangerous to the other).
We understand that ”it” (extreme states of consciousness and diasgreements with consensual reality) could happen to any one of us – and that if it does happen, each and every human deserves to be treated with compassion, respect, lovingkindness… like this.
In practical terms, we don’t give folks forced “intramuscular medication” (time-released injections), we don’t electroshock people against their will, we don’t chain them, humiliate them, perform experiments on them, stigmatize them, silence them, lie to them “for their own good,” condemn them to a slow, drug-induced death, brand them again and again as a “danger to society,” something fundamentally different, other. We don’t do any of these things because we refuse to violate anyone’s humanity – and we recognize that when we do this to someone else, we open the door to having it done unto us.
People are able to define, for themselves, their subjective experiences of reality.
Without a so-called “scientific” definition of mental illness spelled out in the DSM, readymade for the force-feeding, people will be left with a blank page on which to write out their own truths. Truths about our society, our world, and what is “acceptable” in these contexts. Truths about what it means to be well, right-minded, living right.
Those who reject the DSM are already doing this:
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?
-Sascha Altman DuBrul, in his essay “Mad Pride and Spiritual Community: Thoughts on The Spiritual Gift of Madness”
Maps of wildly diverse terrains, pages and pages of difference! What’s right for me may not be right for you – and that’s a beautiful thing. As you can see, this is no utopia. We don’t have to agree about what “perfect order” is [and then single-mindedly enforce that order everywhere]; we don’t even have to strive for perfection at all! We just have to be honest, creatively living our lives each day, mapping out our mental, emotional, and spiritual geographies, all the while respecting our fellow humans as they do the same. And most importantly…
We offer our compassionate, “un-professional” support to our fellow human beings in distress (and out of it!).
This is crucial. We humans weren’t made to be lonely – not in joy or grief, and certainly not in madness. We long to share our experiences, to bond, to connect, to feel the lovingkindness of someone else’s attention, care.
So in distress and out of it, we can follow as an example the standard of care provided by luminaries like Loren Mosher and John Perry . In distress and out of it, let’s be with each other, without judgment (diagnosis) or manipulation (“for your own good interventionism”), without “professional opinions” (self-fulfilling prophecies of chronicity and doom) or prescriptions (forced care).
Let’s make maps together; let’s be fellow geographers of the human condition. Allow for grief in response to the deep sadness that is inevitably a part of life. Allow for terrible fear, at times, and unbelievable joy. Allow for madness as a transformative process, when it occurs; the birthing of a new consciousness. Allow a safe passage, in loving company, through difficult times. Allow our fellow human beings to emerge, on the far side of their extreme states of consciousness, “weller than well.”
We move forward. We don’t look back.
Psychosis as a plastic process 05/10/2012Posted by ALT in Psychosis.
Tags: Dr. Paris Williams, neuroplasticity, psychosis, recovery, Rethinking Madness, schizophrenia, stroke
Neuroplasticity – the idea that our brain is constantly changing, rearranging itself, adapting to the environment it is presented with and optimizing performance based on ever-changing stimuli, that it is, in short, a living thing – is finally getting some attention. Though the concept has been around for, literally, centuries, mainstream neuroscience, stuck in its Cartesian ways, has been doggedly insisting that the brain is like a machine, with specified parts that function in an unchanging way. “Once brain-damaged, always brain-damaged,” they say. [Hmm… sounds familiar, doesn’t it?]
Never mind this couldn’t possibly be true.
This article describes just two of countless examples of a damaged brain reorganizing itself, regaining (or re-developing, to be more accurate) the lost functions in the process. First, we read about Cheryl, who suffered complete loss of her vestibular function. The vestibular function controls balance – without it, she felt like she was perpetually falling. This went on for almost 10 years before a neuroplasticity-based therapy helped her regain almost all of it. [Incidentally, this brain damage was the “side effect” of a drug she was prescribed after a routine surgery.]
Next, there is Pedro, who suffered a stroke so severe it left him unable to speak and with half of his body paralyzed. Through tremendous effort, Pedro and his son George designed a rehabilitation program that allowed him to slowly, ever-so-slowly re-learn nearly all of the skills he had lost. After a year, he was able to resume his job and worked their happily until retirement. After his death, doctors did an autopsy of Pedro’s brain, only to discover a massive legion that had never healed – yet he had regained all of his lost functions. His brain must have reogranized itself, redistrbuting the lost functions to areas unhurt by the lesion.
Doesn’t sound like something your standard machine could do. Which most neuroscientists these days are begrudgingly conceding.
Of course, there are those desparate few who cling to the old ideas (Cartesian doctrine dies hard)…
[Lots more to be learned about neuroplasticity from this book, which I have just finished devouring and highly recommend.]
The Brain is Plastic, not Elastic
Note that the term is neuroplasticity. Not neuroelasticity. What’s the difference?
Something that is elastic can be stretched, but it will always come back to its original shape. Like a rubber band.
Something that is plastic can also be stretched, but it then maintains its new shape. And though you could manipulate it to return it to a semblance of the old shape, it would not be exactly the same… it never could be.
I imagine that the brain activity is like Play-Doh… if you start out with a package of Play-Doh that is a square, and you then make a ball of it, it is possible to get back to a square. But it won’t be the same square as you had to begin with… Even when a patient with a neurological or psychological problem is ‘cured,’ that cure never returns the patient’s brain to its preexisting state.
- Neuroscientist Alvaro Pascual-Leone, in the book The Brain that Changes Itself [emphasis added]
If the brain is plastic, the brain’s processes are plastic, too
Research has already shown this to be true for some processes. Take, for example, memory. Every time we recall an event, our brain literally rebuilds the memory.
I can recall vividly the party for my eighth birthday. I can almost taste the Baskin-Robbins ice cream cake and summon the thrill of tearing wrapping paper off boxes of Legos. This memory is embedded deep in my brain as a circuit of connected cells that I will likely have forever. Yet the science of reconsolidation suggests that the memory is less stable and trustworthy than it appears. Whenever I remember the party, I re-create the memory and alter its map of neural connections. Some details are reinforced—my current hunger makes me focus on the ice cream—while others get erased, like the face of a friend whose name I can no longer conjure. The memory is less like a movie, a permanent emulsion of chemicals on celluloid, and more like a play—subtly different each time it’s performed. In my brain, a network of cells is constantly being reconsolidated, rewritten, remade.
- Neuroscience journalist Jonah Lehrer, in this article (a very, very good read!)
Which brings me to my main point:
Psychosis is a plastic process
It seems that one of the fundamental premises of mainstream psychiatry is that the goal of treatment is to return the patient to the state of mind he or she was in before the psychotic break. “Get back to normal,” they say.
Not only would this truly be impossible (given that the brain is more like Play-Doh than a rubber band), but it may, in fact, be counterproductive to aim for it. Psychosis can better be viewed as a transformative process, out of which a healthier human is born, “weller than well,” as they say.
In the new book Rethinking Madness, psychiatric survivor and clinician Dr. Paris Williams eloquently illuminates the point:
In the life sciences, it is common to think of living organisms as existing in a state of homeostasis, which is an organism’s resistance to change and its ability to maintain a stable internal environment. Mainstream psychology and psychiatry evidently draw from this model when attempting to return a psychotic individual to a state that is as close to his or her pre-psychotic state as possible. It has been suggested, however, that it is actually more accurate to consider organisms to be living in a homeodynamic state rather than a homeostatic one. The term homeodynamic suggests that “once a new stressor is encountered, the organism never returns to its previous dynamic state, but establishes a new dynamic balance appropriate to this newly integrated experience” …
In the context of psychosis, then, this concept suggests that it may be terribly problematic to attempt to return someone to their pre-psychotic condition rather than to support them in integrating their anomalous experiences as they move into an altogether new way of being in the world, an idea that is in very close accord with the recovery research. … [therefore] my working definition for full recovery is: “The condition of having achieved a homeodynamic balance in which the overall distress (and not necessarily the anomaly) of one’s subjective experiences is the same or less than that which preceded the psychosis.”
-Dr. Paris Williams in Rethinking Madness: Towards a Paradigm Shift in our Understanding and Treatment of Madness [emphasis added]
Ultimately, it’s up to each one of us to define “recovery” and “wellness” for ourselves – but I kind of like what Dr. Williams has done with the terms.
Click here to read a preview of the book Rethinking Madness.
Tags: Carmelo Valone, dehumanization, homeless, Kelly Thomas, police brutality, schizophrenia, Talk of the Nation
Have you heard the story of Kelly Thomas, a 37-year-old homeless man diagnosed with “schizophrenia” who was beaten to death by 4 policemen last July in Orange County, California?
It’s reemerged as a topic of discussion recently because of an Op-Ed piece published in the Los Angeles Time by a psychiatric survivor named Carmelo Valone. Entitled “My Kelly Thomas Moment,” the author makes no bones about it: this could have been him.
I had my Kelly Thomas moment on a hot summer night in Boston in 1995…The Boston police officers who responded that night weren’t exactly boy scouts when they restrained me, but I did live to see another day. Because of that, I’ve had the chance to improve, something Thomas didn’t get….
It would be easy to conclude that Thomas was homeless by choice because he refused to take medication to treat a range of symptoms that had been diagnosed as schizophrenia. But things are more complex than that. I myself have never been truly homeless, but I have refused mental healthcare on many occasions, often when I was at my most vulnerable… I am today a functional part of this dysfunctional world we call Los Angeles, and it has been quite a while since I needed any form of inpatient treatment. But there have been times — and this is not an easy thing to admit — when mental illness took over my life.
- Carmelo Valone, in “My Kelly Thomas Moment”
Fact of the matter is— when it comes to alternative experiences of reality, or “mental health challenges” (if you’d like to call them that), psychosis, mania, extreme emotional states; fact of the matter is, it could be any of us.
As a society we long to place the mentally ill in some kind of category separate from the rest of human existence, so that we can chant blindly to ourselves “this would never happen to me, this would never happen to me.” Folks, that’s dehumanization; and aside from being a terrible way to handle the blessing that is human difference! individuality!, it also leads to all sorts of behaviors that are absolutely unacceptable. Like forced electroshock.
Like beating a man to death in the street.
Back to the testimony of psychiatric survivor Carmelo Valone.
Valone was interviewed briefly by Neil Conan on NPR’s “Talk of the Nation” yesterday. I highly recommend you check it out. He expressed himself admirably, even in the face of some very negative opposition (check out the caller – a psychiatrist – at 11 minutes in… YIKES!). Through it all, he maintained a position that I applaud: namely, that the behavior of a person like Kelly Thomas or himself comes primarily from not being heard, from being stigmatized and isolated by his label, from being made hopeless by the lack of compassion from his fellow men, from being dehumanized.
Some stand-out moments:
VALONE: [...] I almost – I almost want to say that these police officers were the mentally ill ones, and Kelly Thomas was the sane one in the situation. I mean, they tasered him. They smashed him with the taser, buttons, the flashlights. They broke his throat. I mean, it’s horrifying. I mean, I had nightmares about it for months, and I feel very badly for his family.
CONAN: Of course, the police officers have something to say on their side, as well. They felt threatened by someone who is out of control.
VALONE: He had no weapons though, you know? He had no weapons. He wasn’t posing any sort of threat from what the witnesses say.
- From Valone’s interview on “Talk of the Nation”
VALONE: […] I didn’t become violent because I stopped taking my medication. I was violent because I was frustrated because no one was listening to me, OK? This is a problem I’d heard, time and time again, because I have friends that are in the psychiatry field – a number of them. And people seem to equate not taking the medication with violence.
- From “Talk of the Nation”
Who’s on Trial?
2 of the 4 officers involved in the death of Kelly Thomas will stand trial, one for second-degree murder and the other for involuntary manslaughter. But let’s not pass it all off on them. WE – as a society of humans – need to examine ourselves. Why are the homeless so maligned? Why are the mentally ill shunted off to the side, neither to be seen or heard as they struggle to speak about their experiences?
Let’s all take a close look at the myriad ways dehumanization darkens our coexistence. With warmth and a little loving kindness, perhaps we can shed some light on the reasons why, 15 years ago, Carmelo Valone wandered the streets of Boston, hopeless and without a voice; why Kelly Thomas walks the streets no more; and why so many of us can, heads held high, walk right past the suffering of our fellow human beings without a glance.
DSM-5 conflicts of interest hit mainstream media; protestors rally, but is it for the right reasons? 03/14/2012Posted by ALT in DSM-5, Mental Health Policy and Inititatives, Patient Rights and Advocacy.
Tags: APA, conflict of interest, DSM-5, John Perry, mental health, Occupy the APA, psychiatry, psychosis, schizophrenia
I’m no journalist.
I did write for my high school newspaper (I can recall a particularly riveting article about different styles of shoes!), but these days I’m strictly a blogger, cavalierly inserting humor, my own biased opinion, and all manner of distractions and sidetracks into my “articles.”
Nevertheless, this ABC news article from yesterday (“DSM-5 Under Fire for Financial Conflicts of Interest”) follows the exact argument I put forward in my little piece entitled “For the DSM-5 Task Force, Being Greasy Never Been So Easy!” Whoa, did I inadvertently produce some journalism here?
I have to admit, I liked my title better.
Ok, ALT; stop patting yourself on the back!
Done. Now let’s dig in.
The ABC story was fueled by the publication of an academic analysis of the conflicts of interest of the various DSM-5 committees, conducted by the same researcher (Lisa Cosgrove) who published a similar analysis in the days of DSM-IV development.
As I wrote awhile ago, it’s practically a conflict-of-interest OLYMPICS! Cosgrove found that about ¾ of the work groups have a majority of members with major ties to the pharmaceutical industry. Some standout groups include:
- Mood Disorders Group: 67% of members report ties to industry
- Psychotic Disorders: 83%
- Sleep/Wake Disorders: 100%
Moreover, when comparing the figures from the DSM-5 to her previous analysis of the DSM-IV workgroups, Cosgrove has found that in about half the work groups, conflicts of interests have only gotten worse.
[click to enlarge]
It appears that the APA thought transparency alone would be a solution to their metastisizing “conflict of interest” problem.
Well, they’re wrong. We can clearly see the giant, throbbing tumor now, but the fact is it’s still there.
The whole point of disclosing conflicts of interest is determining whether someone is unencumbered enough to participate in a decision-making/fact-finding process. For this to be in any way legitimate, there must be some threshold where the person’s conflicts of interest are too great, where they are removed from the process. But the APA apparently has no limit.
Oh, sure, they say something about “no more than $10,000/year directly from the pharmaceutical industry and no more than $50,000 in pharma stock options” … but with major gaps in their disclosure policy and no dollar amounts made public, how can we be sure this is any less of an empty gesture than the rest of their carefully choreographed “transparency” dance?
DSM detractors say the darndest things…
A wave of protest against the DSM has been building over the past few months, but I’m not sure that I’ll be able to unite with the mainstream (or “middle way”) DSM protesters. Here’s why:
Middle way protestors are against the DSM-5 in particular, criticizing the development process, the addition of so-called “unscientific diagnoses,” financial conflicts of interest of the developers, etc.
The idea being that we simply need a better process for creating this thing. And that the botched development of the DSM-5, which will result in flaws that could’ve been avoided with more rigorous procedures, is a risky business because it might turn the tide of public opinion against the very institution of the DSM; which would be terrible because we need some kind of DSM in order to treat mental illness at all. The DSM detractors quoted in this article all seem to fall into that camp; Allen Frances, David Elkins, and Cosgrove herself.
But there’s another camp, which I and many others belong to. Instead of being against the DSM-5 in particular, we’re against the institution of the DSM, period. Instead of arguing that the DSM-5 is marginalizing, stigmatizing, unscientific, we argue that the practice of diagnosing people itself is all of these things and worst of all… dehumanizing!
In ABC’s coverage, only the “middle way” DSM detractors are represented. And I find myself feeling a little piqued by what they have to say. For example:
Dr. Allen Frances, who chaired the revisions committee for DSM-4, said the new additions would “radically and recklessly” expand the boundaries of psychiatry.
“They’re at the boundary of normality,” said Frances, who is professor emeritus of psychiatry at Duke University. “And these days, most diagnostic decisions are not made by psychiatrists trained to distinguish between the two [normality and mental illness, presumably]…”
- From ABC News article “DSM-5 Under Fire for Financial Conflicts of Interest”
The boundary of normality? He speaks as if he knows exactly where that is! And that the DSM-IV catalogs “diseases” that fall well beyond it.
I beg to differ.
Take so-called “schizophrenia,” or psychosis, for example. As John Perry so nicely puts it:
In my opinion, the real pathology in psychosis does not reside in the “mental content,” the images and the symbolic sequences. All of that appears to be a natural psychic process, present and working in all of us. This is normal madness, so to speak. The schizophrenic “disorder” lies rather in the ego, which suffers from a constricted consciousness… The problem of the prepsychotic state is how to discover the impassioned life, and nature has its own answer in the form of a turbulent ordeal, a trial by immersion in the source of the passions – that is, a psychosis.
- John Perry, in The Far Side of Madness
[If you liked that quote and have some time on your hands, read this!]
From Perry’s point of view, psychosis is often a naturally transformative and healing process, somewhat like childbirth. If there is such a thing as a “boundary of normality” (which I doubt), it falls well within it. Psychosis is the ”normal” response of a psyche needing to heal.
Here’s another rather disturbing quote from the middle camp:
“My best hope would be for the APA to respond in a substantive way to the concerns we’ve raised. They have an opportunity here to make a correction that would give the appearance, if not the reality of developing a diagnostic instrument that’s objective and has integrity.”
- Lisa Cosgrove, in the ABC News article DSM-5 Under Fire for Financial Conflicts of Interest; emphasis added
A semblance of objectivity and integrity – not necessarily the real thing – is her best hope for the DSM committee??
Way to aim high!
Should all the DSM-V detractors put aside their differences and join together to protest the DSM-V, or are the two camps far enough apart that their protests really can’t align?
As you ponder, consider this: a large DSM-5 protest (Occupy the APA) is planned for May 5th in Philadelphia at the site of the APA convention. The middle way camp will necessarily be inside the convention (most of them belong to the APA, after all), while the rest of us will be standing outside, barred from entry.
It appears that more than mere distance separates our two camps.
Thoughts from John Perry on psychosis as vision, schizophrenia as process, and healing as the natural result 01/30/2012Posted by ALT in Philosophy/Spirituality, Treatments.
Tags: Diabasis, healing, John Perry, Jung, Loren Mosher, psychosis, schizophrenia, Soteria House
I’m sure most of you are already familiar with the work of Dr. Loren Mosher at Soteria House (if not, this is my favorite article about it).
His is the most famous of these un-medicated, peer support-based treatment approaches for first break (or not) schizophrenia. It also happens to be the best documented, scientifically; and what excellent documentation it is! 85-90% of “acute sufferers” were able to return to the community and did not suffer relapse.
But, as I have been delighted to learn recently, his is by no means the only iteration of this treatment model. Another pioneer in this field – a friend and contemporary of Mosher’s, in fact – was the Jungian John Weir Perry. His treatment center, called Diabasis, operated in San Francisco in the 70s. Heavily influenced by Jungian approaches to psychosis (Perry did study with him in Switzerland) and Chinese philosophy, Diabasis was a place for schizophrenics to process their internal Apocalypse with the loving support of the laypeople staffed by the project. Medication was, for the most part, avoided, as were restraints and coercion of any kind.
Today I stumbled upon an extensive and fascinating interview with John Weir Perry about the nature of psychosis and “schizophrenia” and the approach of Diabasis to these phenomena. I’ve pasted a few of my favorite excerpts below, but you can also download the entire thing here.
On Diabasis and the healing nature of a supportive, home-like environment:
One has to let the visionary process unfold itself spontaneously.
Under these conditions, to our surprise, we found that our clients got into a clear space very quickly! We had started out with the notion that we would surely be in for a lot of bedlam with all this “madness” going on, but actually the opposite was true! People would come in just a crazy as could be on the first day or two, but they’d settle down very soon into a state of coherency and clarity… The calming effect of a supportive environment is truly amazing!
Now throughout all this there was nothing scheduled, nothing mandatory. It was all informal… You see, we wanted them to be in this house of their own free will. They had to realise their own desire to belong in the house, and they did.
So this whole approach is essentially one of releasing, rather than suppression. We allowed everything and encouraged its expression — not towards chaos, but toward communication! Communication tends to order.
Schizophrenia as a self-healing process:
“Schizophrenia” is a self-healing process – one in which, specifically, the pathological complexes dissolve themselves. The whole schizophrenic turmoil is really a self-organising, healing experience. It’s like a molten state. Everything seems to be made of free energy, an inner free play of imagery through which the alienated psyche spontaneously re-organises itself – in such a way that the conscious ego is brought back into communication with the unconscious again…
It [psychosis] is like the mythological image in a perfect stained-glass window being smashed, and all the bits and pieces being scattered. The effect is very colourful, but it’s very hard to discern how the pieces belong to each other. Any attempt to make sense of it is an exercise in abstraction from the actual experience. The important thing is to find the process running through it all.
“Chronic schizophrenia” – a cultural construct:
[Interviewer:] So are you saying that the reason we have so-called “chronic schizophrenia” in our society, – where a person is medicated, distressed or hospitalized for decades – is really cultural? A society which refuses to understand the healing nature of the phenomenon?
Yes, it seems so. Of course, there are some unusual cases where the individual simply can’t handle the impact of all this unconscious content, or doesn’t know what to do with it, and freaks out. But from my experience at Diabasis, I’ve seen so many people go the other way that I really do feel “chronic schizophrenia” is created by society’s negative response to what is actually a perfectly natural and healthy process.
Goal of Perry’s treatment approach:
The tendency [amongst first break schizophrenics]… is to concretise all the symbolic stuff and believe there are enemies out there, and that the walls are wired, that there are people with guns at the window, and subversive political parties trying to do things, or that one is being watched because one is the head of some organisation and everybody knows it. All of that is a mistaken, “concretistic” tendency to take too literally things whose correct meaning is actually symbolic.
So yes, the therapeutic goal is to achieve that attitude which perceives the symbolic nature of the ideation which belongs to the inner reality. Now, the inner reality is real! It’s very important to grant it that reality, but not to get the two realities mixed up. That’s the trick! Actually, for most people it’s surprisingly easy…
The average person tends to go along with the inner journey and to realise – well, they do need to be reminded – but once they’re reminded, they tend to quickly perceive that it is a spiritual test, or a symbolic test, and not the actual end of the actual world.
Again, the full interview with Perry is available here.
If you’re intrigued by Diabasis and would like to know more, Perry wrote a book called The Far Side of Madness about the program. Additionally, Michael Cornwall over at Mad In America is blogging about his experience with the program. I suggest you check out what he has to say about it as well!
Flowers in the Bloodstream: one man’s quest to make the prescribing of long-acting antipsychotic injections an ethical obligation 01/19/2012Posted by ALT in Mental Health News, Mental Health Policy and Inititatives, Pharmaceuticals.
Tags: anosognosia, anti-psychotic injection, antipsychotic, Boycott Normal, DSM-V, Janssen, schizophrenia, Ted Kaczynski, Unabomber, Xavier Amador
This is an ad I saw in my sidebar the other day. Look at what they did. It’s so devilishly clever, isn’t it?
(click image to enlarge)
If you’re a real “psychiatrist who cares,” you’ll talk to your patients about [or, rather, talk them into] a long-lasting injection of anti-psychotic medication – essentially, Risperdal — directly into their bloodstream.
Now some patients are not going to be compliant when it comes to having these akathisia-, diabetes-, tardive dyskinesia-causing, brain-shrinking drugs with [at best] dubious efficacy forcibly slow-released in their bodies for a month. So Janssen has kindly provided several little educational videos (accessible by clicking on the ad, or here) to help doctors figure out how to do that.
They’re set up to look like academic lectures, and they have nice-sounding titles like “Positive Engagement: Therapeutic Alliance & Long-acting Therapy Given by Injection in the Treatment of Schizophrenia.” I felt really good after I read words like “positive,” “engagement,” and “therapeutic.”
But then I watched one of them.
It features a man by the name of Xavier Amador, Ph.D. giving a powerpoint lecture designed by Janssen.
In it, he explains what is really meant by those lovely words I mentioned above.
Most fascinating is the manner in which he approaches “therapeutic.” According to Xavier, part of the problem with schizophrenics is that they don’t always agree that they’re suffering from a lifelong illness, that recovery is impossible, and that they need drugs for the rest of their lives.* They don’t know they’re sick!
There’s a special name for this in psycho-babble – it’s called anosognosia.
Here’s the key: folks who do know they’re sick (again, by the above definition), are the ones most likely to take their medications. To be compliant. And so the real role of the “psychiatrist who cares” is to therapeutically convince the patient that he is indeed sick in this manner, and that he should take his meds, preferably via injection.
Dr. Xavier Amador, funded by Janssen, has spent a good deal of his professional career hawking an evidence-based practice (he calls it “LEAP”) guaranteed to do just that.
He goes into greater detail in another presentation, also funded by Janssen, which he gave at a government-sponsored conference in New Jersey last year.
Entitled, “I am not sick, I don’t need help,” the presentation is all about anosognosia, how it “impairs common sense judgment about the need for treatment,” and how overcoming it is “one of the top predictors of long-term medication adherence.” [which he appears to equate with recovery]
What causes anosognosia? Our beloved Amador posits that it may be
Psychological defense? “Culture” and/or Education? Or Neuropsychological Defects??
- Xavier Amador, in his presentation “I am not sick, I don’t need help” [emphasis added]
Yes, it is somewhat funny that a self-proclaimed “academic” would stand – in all seriousness – in front of a slide bearing that message.
But as it turns out Amador has been standing in front of silly slides and saying equally ridiculous things for years.
Amador and anosognosia go way back
All the way back to 1997, in fact, when Amador was involved in the trial of Ted Kaczynski, also known as the “Unabomber.” Kaczynski did not want to mount a defense based on a plea of mental illness or insanity and actually went to great lengths to block his attorneys from doing so. He maintained that his actions were deliberate, a logical result of his personal philosophy as outlined in his Manifesto and extensive journals (which he stated he kept, in part, to prove that he was not “mentally ill”). Kaczynski wanted people to understand the motivations for his actions and not have them be discredited as the “ravings” of a schizophrenic – and he was willing to risk the death penalty in order to so.
Nevertheless, a court-ordered psychiatric evaluation conducted found him to be schizophrenic (full text available here – also by court order, so that the public might gain a “better understanding of the Unabomber’s [schizophrenic] motivations”).
That he was found to be schizophrenic really comes as no surprise. As one of my favorite studies shows, even people displaying no psychiatric symptoms whatsoever have little trouble obtaining that label.
And what were Kaczynski’s symptoms? His “lack of personal relationships,” his “delusional thinking involving being controlled by modern technology,” and (drumroll, please) anosognosia.
Amador, who served as an independent expert for the court, reviewed Kaczyinski’s extensive psychiatric records, neuropsychological test results, and the infamous unabomber diaries. Amador then supplied the court with mounting evidence that Kaczynski’s refusal to be evaluated related to anosognosia, a manifestation of Kaczynski’s schizophrenia.
- from this article on Amador’s anosognosia activism
That one of Kaczynski’s three main symptoms of schizophrenia was his detailed and carefully documented denial of having it and resistance to being labelled doesn’t appear to strike Amador as funny. I might add that Kaczynski’s other main symptom — “delusional” worries about the all-important role technology seems to play in our society and the isolating effects that understandably follow — has troubled me, and hundreds of thousands of others, from time to time. Does that make us all sick?
I guess it does if they say it does!
The article goes on to share some of Amador’s initial inspiration to coin and then promote the term “anosognosia:”
It was his experience as a clinician and as a brother of someone with schizophrenia, Amador said, that led him to do research on anosognosia, “which is not to be confused with denial,” he emphasized, although in the beginning, he did not make that distinction. “That’s what I called it when my brother refused to take his medications, and that is what I called it when after his third hospitalization, I found his Haldol in the trashcan,” said Amador.
I suppose there’s no other possible explanation for a thinking, feeling, decision-making, adult human being throwing his Haldol in the trash can.
From a made-up word to the DSM-V: Amador takes anosognosia to the next level
About a year ago, when the DSM-V Task Force was really going at it hot and heavy, Xavier Amador issued this appeal on the Internet:
…Right now, there is no proposal to measure insight in persons with schizophrenia or bipolar disorder much less require that clinicians diagnose a subtype (with or without insight or with or without anosognosia). Such a requirement will drastically change treatment plans and hospital discharge plans. If a doctor has to diagnosis a lack of awareness of illness, then s/he is ethically obligated to address this problem, this symptom, and the non-adherence to treatment it causes. Rather than simply send the person on their way with a prescription they will never fill. I hope you will comment on the website Dr. Torrey recommends below.
We don’t have much time as the deadline for public comments is less that one month away…
Doctors will be obligated to ensure adherence to treatment plan… ”psychiatrists who care” must make sure their patients take their meds (perhaps in the form of injection)…
Isn’t that the exact sales pitch Janssen is using for their long-acting injection of Risperdal?
If anosognosia is officially added as a “symptom” of schizophrenia in the DSM-V, it essentially would make prescribing long-acting anti-psychotic injections to folks who “don’t know they’re sick” an ethical obligation!
Sounds like Janssen, and any other pharmaceutical company that manufactures a “flowers-in-the-bloodstream” shot, is going to score. Big time.
Thanks in part to the presumably very well paid** Amador.
And that’s just one more reason why we need to protest the DSM-V.
Join me in Philadelphia — or do it from anywhere else in the world! — on May 5thin saying “enough is enough.”
*This definition of schizophrenia, though it is endorsed by the APA [American Psychiatric Association] and NIMH [National Institute of Mental Health], is of course completely false. See Robert Whitaker’s research, and also the work of Loren Mosher, as proof. Also, a few recovery stories as living proof.
**Just how well paid? We’ll know his exact price in just a couple of months, but for this kind of a score, I’m expecting to see a lot of zeros.