The FDA, pharma and the pawpaw patch

My husband and I met in a course about the economic effects of government regulation, so it has been a subject near and dear to our hearts. We learned about regulatory capture, or "producer protection" as our economics professor termed it. Every year our professor reread Gabriel Kolko's book Railroads and Regulation to refresh his thoughts on this matter. Kolko, who taught at our university, was a socialist. Our professor was a Milton Friedmanite, yet he and Kolko found common ground in the evidence that producers act in their own best interests by aligning themselves with government regulators. It's not such a stretch for the public to understand the motivation, particularly when it comes to railway barons. What is hard for us to swallow is that government agencies have willingly allowed themselves to be captured when it comes to regulatory approval of drugs. See my previous blog post on the FDA and Merck.

Government regulation of railways, according to Kolko, was exactly what the railways wanted.  I am reminded of the Uncle Remus story where Brer Rabbit pleads repeatedly with Brer Fox that he can kill him, thrash him, do whatever, but please, please, please do not to throw him in the pawpaw patch. Naturally, Brer Fox is tricked by thinking that doing what Brer Rabbit is pleading not to do will really "fix" him. He throws him in. Brer Rabbit reminds Brer Fox as he scampers away that he was born and bred in the pawpaw patch and the pawpaw patch is exactly where he wanted to be.

More about regulatory capture below and at Wikipedia.

Regulatory capture occurs when a state regulatory agency created to act in the public interest instead acts in favor of the commercial or special interests that dominate in the industry or sector it is charged with regulating. Regulatory capture is a form of government failure, as it can act as an encouragement for large firms to produce negative externalities. The agencies are called Captured Agencies.


For public choice theorists, regulatory capture occurs because groups or individuals with a high-stakes interest in the outcome of policy or regulatory decisions can be expected to focus their resources and energies in attempting to gain the policy outcomes they prefer, while members of the public, each with only a tiny individual stake in the outcome, will ignore it altogether. Regulatory capture refers to when this imbalance of focused resources devoted to a particular policy outcome is successful at "capturing" influence with the staff or commission members of the regulatory agency, so that the preferred policy outcomes of the special interest are implemented.
Regulatory capture theory is a core focus of the branch of public choice referred to as the economics of regulation; economists in this specialty are critical of conceptualizations of governmental regulatory intervention as being motivated to protect public good. Often cited articles include Bernstein (1955), Huntington (1952), Laffont & Tirole (1991), and Levine & Forrence (1990). The theory of regulatory capture is associated with Nobel laureate economist George Stigler, one of its main developers.
The risk of regulatory capture suggests that regulatory agencies should be protected from outside influence as much as possible, or else not created at all. A captured regulatory agency that serves the interests of its invested patrons with the power of the government behind it is often worse than no regulation whatsoever.

Two characters in search of a publisher

I began writing about Chris's and my experience in mental health care five years ago when it suddenly clicked with me that a diagnosis of schizophrenia was the beginning of a fabulous journey, although not one without peril. It occurred to me to write a book to sound the drum for an alternative way of thinking about an up-until-now dismal diagnosis. Five years later and I am still at it. Seventy-five thousand words but just about done.

What I've written is sort of a do-it-yourself look at alternative mental health but in the form of a memoir. It can also be seen as a coming of age story regarding waking up to the delusion of the pharmaceutical cure. My book has been professionally edited three times. I  realized early on that my writing skills were rusty from being on the mommy track for so long (grocery lists and notes to teacher). It was just about ready two years ago and then Chris had a relapse. Being a holistic convert, I took it in stride as a necessary step on the road to self-awareness on both our counts. The relapse also allowed me to add some interesting new chapters on yet more therapies and approaches.

Most of the therapies that I have written about in my book are not known to be applied to a diagnosis of schizophrenia. That's part of why what Chris and I are doing is so interesting. It's all new territory. I also personally underwent these novel therapies so that I could get a better grip on what I was writing about. I, too, have benefited from the healing effects of the therapies.

I am at the point where I could really use some advice about how to market this book. I am perfectly prepared to go the self-publishing route because it involves no rejection letters and not as much work as chasing agents. (I have already received a few rejection letters, so I feel I must be getting closer to a published book). I can also put it on Authonomy, the author's website where other writer's critique your work in exchange for your critiquing theirs. My book would be available to anyone who simply signs up for an account. What I want to do is to get our story to a larger public. I've gone the blog and Twitter route as a way of getting a strong "platform" as they say in the biz but also as a way of sharpening my writing skills. I don't know how strong my platform really is, but it looks good in a query letter.

If you have any ideas that I may not have considered, please feel free to contact me about them. No idea is too small, too big or too eccentric, trust me.

______________

Title of this post is inspired by Pirandello's Six Characters in Search of an Author. For an interesting look at Pirandello's inspiration, google Pirandello schizophrenia. 

Shipwrecked souls

Kristin at Borderline Families has leveled a well-aimed broadside taking issue with an article by Craig Garner appearing in the Huffington Post. You can read her blog post here. Having read the Garner piece, I find myself agreeing with Kristin's point that Mr. Garner is supporting the psychiatric industry by trotting out the usual uninformed views of mental illness (he should know better) such as when he writes "that the family experiences fear after a loved one is diagnosed with “mental illness”. He guesses that "this is because they are wondering if they are susceptible to the “illness” as well."

Kristin saying that the thought never entered her head that she would somehow "catch" the illness was exactly my reaction at the time, but unfortunately this is the clichéd question that every Frequently Asked Question about mental health poses. Haven't we moved beyond this simplistic idea? Obviously not, judging from what Mr. Garner wrote . My reaction at the time was that reassuring Chris's brothers that they weren't going to catch this would have the opposite effect. "Oh, no. This is obviously a possibility or why else would she bring this up!" Like Kristin, my fear was for my son as I watched him clearly not get better on the drugs that every doctor we came into contact with claimed would make him better.

The part of her post that I can really identify with is her experience with the Menninger Clinic. Our experience was with CAMH in Toronto, but it really doesn't matter where you go for help because the professionals who are supposedly providing the help haven't a clue about mental illness or what they are going to do about it. Nonetheless, we are expected to trust their superior knowledge. Yes, I would characterize their contagious "I'm so sorry attitude," as handwringing.

The inability of The Menninger Clinic to explain their philosophy for treatment was dumbfounding. It was as if they created this layered confused recital so that we thought that they were so damn intelligent that we would defer without question. Did they want us to believe that their program was so developed and intricate that the layperson was unable to grasp the concepts?
For two days staff members stood before us wringing their hands commiserating over our difficult situations. Then each commenced on a well rehearsed speech describing various aspects of their treatment philosophy. The specialized language and convoluted blather left most couples writing notes to one another or sitting on the edge of the plastic seats, trying to stay warm and attentive. I wondered whether their techniques were so cutting edge that it was hard to nail down the complexities or was it simply that the thesis had been lost in psychobabble. I think that the reputation of The Menninger Clinic was a towering house of cards. If we all exhaled at the same time, it would have crumbled.

It would have been far better for Chris and our family if we weren't greeted at CAMH like we were entering a funeral home. Some honesty would have gone a long way, too. "Gee, your son needs some help in going through a crisis. It may be related to his interactions with the family environment when he was growing up, or he may just need nutritional support or a combination of several approaches. We can give him a drug for a short period of time, but the drugs have side effects. The best thing for you to do is to take the perspective that it is a crisis that will pass, with proper psychological support for him and for you. He's not going to get better overnight, and it may take him a few years to get back on his feet, but recover he will and he may even surpass all previous expectations. Chances are he'll recover quicker if you learn how to engage him.

Unfortunately, the stereotype of mental illness is perpetuated by handwringing professionals who act like funeral home directors. That part is definitely contagious.

Yoga

I have yet to write about yoga on this blog, and I realized driving home today that this was going to change. Practicing yoga should be part of everybody's holistic lifestyle.

When Ian and I were in the depths of our despair over Chris a few years ago, we signed up for a yoga class one night a week after work. This is the first hobby (can yoga be considered a hobby?) we have actually done together in all our years of marriage. I like going to flea markets on Saturdays, Ian prefers to have a massage. Ian likes working on week-ends. I find other ways to amuse myself. We used to take our sons camping when they were little, but that doesn't count because it was a family activity, like going to church.

So, here we were in our mid fifties, starting out in yoga. It seemed that everybody else in the class had been doing yoga for years. But we persevered and grew to love it. It's been three years.

At the same time as the yoga, we began to dabble in meditation, just a night here and there with a group. Occasionally during both the yoga and the meditation classes, silent tears would stream down my cheeks. I was letting the sadness and the tension go.

I haven't cried for a long time in either of these classes. Something happened. I felt stronger, more at peace and I grew to understand that there was really no need to cry because what both Chris and I were going through was a spiritual transformation. The tears were important for me in letting go of old habits and attitudes.

One reader's comment to the NY Times Patient Voices

If you see meaningful coincidences everywhere, you get quickly labelled schizophrenic and called "delusional." You are urged to take drugs and told that if you don't accept your illness, this also proves you are delusional. The New York Times article that I referred to in yesterday's post received a lot of interesting comments, many of which urged a different way of looking at schizophrenia. A few readers clung to the idea that their relative was delusional partly because they wouldn't accept their illness.

Here's a comment from a reader that fits in with my previous posts on Pythagorus, numerology and seeing patterns. Now, if it were recognized that the experience of schizophrenia is actually an experience of trying to make sense of the environment and is therefore a healing experience, more people, properly supported, actually would heal.

The skeptics use the term “apophenia” to denote delusions of the mind. It includes seeing patterns in nature, which to them, are just coincidences.
Nonsense, I say:
I’ve obtained an emphatic verification from a senior research group at Princeton University, which finally proves that an aspect of “mind” does transcend space and time, i.e., precognition.

This is their letter:

PRINCETON UNIVERSITY
SCHOOL OF APPLIED SCIENCE
C-131 ENGINEERING QUADRANGLE
P.O.BOX CN5263
PRINCETON, NEW JERSEY 08544-5263

FEBRUARY 8, 1993

Dear Mr. Laurence:
Thank you for sharing the description of your “meaningful coincidence” with us.
It is an EXCELLENT example of connectedness between the subjective and objective domains of human experience, mediated by the symbolic language of numbers. In a very real sense, as was recognized by Pythagoras and his successors, this symbolism lies at the root of all science, including even the contemporary, whereby the human mind seeks to interpret in some tangible and communicative mode the intuitive insights gained from observing nature. The error lies in our FORGETFULNESS of the origin of these symbols.

Sincerely,

*Brenda J. Dunne
Laboratory Manager

*Author, with Dean Robert G. Jahn, “Margins of Reality” – the role of consciousness in the physical reality. (C)1987, 2009

Rossa's comment: The skeptic in me says that if the letter author had written to Brenda J. Dunne and stated that he was suffering from schizophrenia, she would have dismissed him as a crank, despite the fact that the experience of synchronicity is even more profound in the so-called schizophrenic.

Why NY Times Patient Voices series reads like an infomercial

I joined NAMI yesterday for "the research." Here's what was in my in-box from NAMI this morning: The New York Times (NYT) Patient Voices series offers intimate glimpses into the lives of NAMI members living with schizophrenia or schizoaffective disorder.

This is not just a random NY Times story. It is by and about NAMI members, and, judging from the e-mail below, not just any NAMI members, but NAMI-trained speakers who spread the gospel according to NAMI. Right above this NY Times series is an advertising banner that proudly states "Ask the doctor if NEW 23 mg/day Aricept is for your loved one." NAMI has been heavily criticized, by Senator Chuck Grassley for one, for receiving most of its funding from pharmaceutical companies. If you are familiar with the NAMIWalks program, clicking on the map for just about any state quickly reveals that pharma is a large contributor to this cause.

NAMI turned me off very quickly when I first started to look for help for my son. I felt that if I listened to what they say, my son would be a patient for life, in large part because it emphasized the need for medications every step of the way. It had a dreary view of mental illness that I didn't want to buy into, not just for my "loved one" but for the sake of my own mental health. A lot of my complaints have to do with the fact that NAMI speaks words of sadness and impact, of stigma and of lives less lived. Schizophrenia to NAMI is something to be managed and endured through a thin veil of pervasive sadness. Yes, sad is how it appears to me.

Through compelling vignettes and an interactive website, visitors learn how these illnesses can impact every facet of a person’s life, from relationships and stigma to work and faith. Listen to their stories and then join the conversation on the NYT's Well blog.

NAMI’s In Our Own Voice program (IOOV) brings these kinds of personal stories to life. IOOV is a national, public education program in which trained speakers share their stories of mental health recovery with students, law enforcement officials, educators, health care providers, faith community members and other audiences.*

Personal stories are uniquely powerful. They illustrate how one can manage his or her illness and live a full, rewarding life. They put a face to mental illness and remind us that mental illness affects all of our communities. They show us that recovery is possible and encourage others traveling along their own paths to wellness.

Speakers not only educate others, but also find great fulfillment in sharing their experiences. NAMI members have many inspiring stories to share through IOOV, NAMI.org and our many publications. If you have a story you'd like to share, please e-mail yourstory@nami.org.

With your help, we can continue to educate communities across the country about mental illness one story at a time.

_________________________
*NAMI's In Our Own Voice program was started with a grant from Eli Lilly and Company.

Rupert Sheldrake on habits and expectations

Does anyone out there not know who Rupert Sheldrake is? Rupert Sheldrake is an English biologist who has made a phenomenal reputation for himself in a field that he calls "morphic resonance." Seven years after completing a PhD in plant physiology at Cambridge he took a position in a plant research lab in Hyderabad, India. Three years later he joined an ashram run by Dom Bede Griffiths. Sheldrake gradually reached the conclusion that nature was ruled by habits, not by eternal, unchanging laws as envisaged since dawn of Modern era by scientific tradition. The idea of eternal laws may have been appropriate to the era in which modern science was born, when more or less absolute monarchs ruled many nation states. From his Eastern experience, Sheldrake changed his linear biology orientation and embraced the idea that the universe was intelligent, intuitive, non-random and spiritual. Morphic resonance recognizes that the universe is living and growing and that memory is inherent in all living things.

The idea of laws as no more than intellectual habits now offers a whole new foundation for scientific endeavor. Knowledge used to be confined to monasteries and was the domain of the Catholic Church. Our western canon of scientific thought was rarely seeded by thoughts from different cultures even through most of the past century. Our scientific "open-mindedness" until very recently has been the domain of DWEMs (dead white European males). This unchanging view of laws governing nature is being blown wide open by quantum physics, consciousness research and the invasion of other cultures on our established habits.

Therefore, is the scientifically "valid" idea that there is a disease called schizophrenia along with other mental illnesses no more than a long entrenched habit of thought, like the idea that the sun revolved around the Earth? I would say, yes, yes, yes. Change your belief system (your expectations) and you change the outcome. If you believe in the disease, you are the disease, and people will treat your accordingly.

Here is an excerpt from Rupert Sheldrake on "expectations."

Lurking in the background is the alarming thought that much of established science may reflect the influence of the experimenters' expectations, even through psychokinetic or other paranormal influences. These expectations may not only include those of individual investigators, but also the consensus among their peers. Scientific paradigms, models of reality shared by professionals, have a great influence on the general pattern of expectation and could influence the outcome of countless experiments.

It is sometimes suggested, in a joking way, that nuclear physicists do not so much discover new subatomic particles as invent them. To start with, the particles are predicted on theoretical grounds. If enough professionals believe they are likely to be found, costly accelerators and colliders are built to look for them. Then, sure enough, the expected particles are detected, as traces in bubble chambers or on photographic films. The more often they are detected, the easier they become to find again. A new consensus is established: they exist. The success of this investment of hundreds of millions of dollars then justifies yet further expense on even bigger atom smashers to find yet more predicted particles, and so on. The only limit seems to be set not by nature herself, but by the willingness of the US Congress to go on spending billions of dollars on this pursuit.

.

Why I feel psychiatry is an abuse

Psychiatry, which actually does know better, tells everybody's story but the patient's. Psychiatry, largely rejecting R.D. Laing, Thomas Szasz, Soteria, and patient inspired approaches, finds itself in thrall to the drug rep's story, the thrilling story of Novartis, AstraZeneca and Bristol-Meyers-Squib. The pharmaceutical companies tell the story of guys under the bridge, who miraculously "start talking sense" after a course of their drugs. What happens to these guys under the bridge? Well, supposedly they are not cured, because drug companies and doctors don't believe in cure, only management. Perhaps they are now living out their lives in half way houses or are back under the bridge. We'll never know, will we? Psychiatry seems to keep poor records of what happens to its patients in the long run. If they did, we might be hearing a different story, the story Robert Whitaker tells in Anatomy of an Epidemic.

Psychiatry and drug companies don't allow families to tell their stories. Families ask for help, and despite the fact that psychiatry does know better, we are told that there is no cure, that we are not to blame, that the patient has a damaged brain. Just trust in us, they tell us, and we will manage the problem. But, they don't, do they? Usually, the problem gets worse.

Psychiatry knows better, but it lost the plot years ago. Remember Mark Vonnegut, the son of Kurt Vonnegut who wrote a really good story about his psychotic break (The Eden Express). In the book, Vonnegut credits a lot of his initial recovery to the vitamins that he took.* Fast forward a few editions of the book and he expresses regret that he ever said that. I was really puzzled about why he turned his back on vitamin support and his healthy skeptcism of the medical profession, until I realized that in the intervening time, he had gone to medical school, where he no doubt learned that vitamins couldn't possibly be responsible for his recovery. He became one of "them." I always thought that Mark Vonnegut had a psychotic break or two and then recovered. Apparently, this is not the case. He actually suffers from what appears to be tardive dyskinesia from the drugs that he subsequently opted for in favor of the medical paradigm.**

____________________
*From schizophrenia.org In his book, The Eden Express, Mark Vonnegut, the son of novelist Kurt Vonnegut described his experience with schizophrenic delusions. Standard psychotherapy was unable to help him, and most of his doctors said his case was hopeless. Then Vonnegut went to the Brain Bio Center and "the biochemists said otherwise. They fixed me up with embarrassingly inexpensive, simple, nonprescription pills. Vitamins mostly."

**This information was gleaned from an address that Mark Vonnegut gave in 2003 at a NAMI convention. Unfortunately, it is no longer available at this link. In his speech he refers to the side effects of the drugs he takes.

What, me worry?

I woke up in the early hours of the morning and couldn't get back to sleep. So, I lay there and wondered what was that low flying plane doing at night over our peaceful city? That thought entertained me for a short while, and then Ian woke up and padded into the bathroom and back to bed. Instead of playing possum like I normally do so I can get some decent sleep, we talked. And what did we talk about? Chris? No. Taylor or Alex? No. We talked about Ian having his mercury fillings extracted and I warned him that doing it quickly can lead to psychological trauma and he could go insane! We laughed. Insanity has no hold on us any longer. I know of someone who claimed that her daughter having all her fillings replaced at once led to years of pychosis. I also know someone who claimed that having them all removed quickly cleared up his physical and mental health. Go figure.

I am so grateful that waking up in the middle of the night these days does not lead to constant worry like it used to. Ian and I have passed our one year anniversary of not discussing Chris with each other. We made this pact when Chris left the psych hospital after his relapse. In the past, Chris's peculiarities and our dealing with the doctors drove us mad with worry and we would confide our worries to each other. This invariably led to strife because we each had a different idea about how to handle this.  We no longer seem very interested in what Chris is doing. We have taken the long term view, that if we just leave him alone and provide whatever professional support we can, then he will get better. He certainly seems like he's getting better, but we are no longer there to take his pulse.

This is our own version of practicing low expressed emotion. It means not discussing Chris. This strategy has miraculously allowed us to stop worrying. We trust that all will be well.

The wounded warrior

This post is a tribute to Gianna Kali, the creator of Beyond Meds, a blog about withdrawal from medications, but not just a blog about withdrawal. Gianna has chosen to continue her healing journey without the tiring demands of daily blogging. Gianna Kali is her pseudonym. Perhaps she took inspiration from the Hindu goddess Kali, the dark goddess, whose name is associated with time and change.

Like most goddesses, Kali is controversial. Her goddess persona changes with the time. She has an original terrible side associated with death and destruction, but also a later repositioning as a warm and kind maternal Mother of the Universe. Like a mother, she is a protectress of last resort. Indian mythology is complex and has evolved over thousands of years. Since I am not an Indian scholar, I will leave interpretation to others, such as this writer:

Of all the forms of Devi, She is the most compassionate because She provides moksha or liberation to Her children. She is the counterpart of Shiva the destroyer. They are the destroyers of unreality. Of all the forms of Devi, She is the most compassionate because She provides moksha  person who is attached to his or her ego will not be receptive to Mother Kali and she will appear in a fearsome form. A mature soul who engages in spiritual practice to remove the illusion of the ego sees Mother Kali as very sweet, affectionate, and overflowing with incomprehensible love for Her children.

Gianna Kali is generous of spirit. She chronicles her healing journey to help others and she has helped neophyte bloggers like me spread our message through her blog. Spiritual to begin with, she eventually found herself on the painful path she was destined to take.

In the book, Goddess Shift: Women Leading for a Change, Dr. Susan Kolb writes about her own healing journey in terms of the mythology of the wounded warrior. In order to heal others, a person has to undergo a revolutionary healing journey of her own. This is a sacred journey, also documented as the path of the alchemist. The warrior emerges stronger, wiser, better able to carry on and an inspiration to others. Through ordeal, the warrior comes to know herself.

Thank you Gianna and all good wishes for your continuing recovery. We look forward to hearing from you when you are ready.

Shapes and angles

I was rummaging through my purse cleaning out debris from my recent vacation and I came across an article that I had torn from USA Today, Transitioning to college with a learning disability. According to the article the number of programs offered to students with learning disabilities at the nation's colleges have skyrocketed since 2001 from 22 to more than 250.  I get interested when I read these things in a "follow the money" curiousity. With programs come employment opportunities. Through grant money, the Department of Education encourages post-secondary institutions to establish transition programs for students with learning disabilities who want to go to college. According to the article, the number is "only going to increase"

Fair enough, I suppose for people with certain well documented learning disabilities like dyslexia, but then we come to a learning disability cited in the article that has to do with an "inability to recognize shapes and angles." The girl cited in the article has been receiving help for this since grade 3. My thinking is that maybe she should not major in math or design. When my sons were at school, so many children had very specific learning disabilities that sounded similar to the shapes and angles one, or else they involved "auditory processing deficits" or not being able to find the right word to use. They received extra time on tests. Is this proliferation of really specific learning disabilities that most people will eventually manage to compensate for, really all that necessary? I guess so, since there's a huge help industry out there that is "only going to increase."

Mere alcohol doesn't thrill me at all

Chris is quite perky these days. There are very few times in his life where I have seen him thrilled, but Sunday was one of them. His friend from high school who used to be in a band with him, phoned him out of the blue and asked if he would join his new classic rock band. No hesitation in saying "yes."

The other times in his life where I would say he was thrilled are the following: Getting his first guitar, getting a laptop, our buying a la-z-boy recliner for our living room (all the men in the house were thrilled!) and being in a band.

He knows he has bigger things to think about, like a career direction, and he is working on these, slowly, while getting lots of support from others. For now, he is thrilled and it sure suits him.

Early separation trauma

The hardest thing for me about Dr. Clancy Mackenzie's theory of early separation trauma for schizophrenia is in reviewing the way we lived our life when Chris was a baby. According to Dr. Mackenzie, he can tell from the way the person expresses pychosis, the age at which the separation trauma occurred. He links it invariably to separation from the mother, not the "mothering one."

Here's what Chris's early life was like from a separation point of view. When Chris was four months of age, I went back to work and we employed a woman to come into our apartment and take care of him while Ian and I were at work. We felt this arrangement was preferable to day care for us. After less than a year, "Gloria" was no longer able to continue and we employed her mother. When Chris was two and half years old, Alex was born and we moved to a house in the suburbs. We felt that Gloria's mother was too old to make the commute every day and we found a young live-in nanny. We employed a succession of live-in nannies until our youngest, Taylor, was in kindergarten.

Dr. Mackenzie would have a field day with the situation and the many caregivers. We honestly felt that   keeping Chris at home and not taking him out to daycare was the least disruptive option.

Dr. Mackenzie claims that he can pinpoint from observing someone by their behaviour, reality and feelings the age at which the trauma occurred. He relates how a woman came into his office and said she had schizophrenia for the past twelve years, and he said "no you don't. You have schizoaffective disorder." He believes that schizophrenia has its origins in the first eighteen months of life and he told her that her trauma happened at 20 months. (Her younger brother was born when she was 20 months old.) This was obvious to him because he felt she had too much warmth and affect for a person traumatized before twenty months. (While Dr. Mackenzie's schizoaffective/schizophrenia distinction is disturbing to people like me who don't care for labelling, I think I get where he is coming from.)

Dr. Mackenzie's trauma theory is compelling because he claims that the trauma is specifically within the first eighteen months and that it is separation anxiety. A quick reading of his website shows that he believes that the best expressed emotion is not low expressed emotion but zero expressed emotion, which means that the traumatized person has to break off all ties with the family while healing takes place. This sounds promising in that it has worked for other people, but how is this achieved in practice? We tried to encourage Chris to leave (for his own good!) two years ago and we got relapse in return. Where does someone go when they have no money or job skills?

Dr. Mackenzie may not have it all right, but he has made a good enough case to investigate further, which I will do when I am brave enough to follow up. Kris at Borderline Families is also getting the ball rolling on her blog post.

The child's world is small

A recent comment from Anonymous sent me scurrying to Bruce E. Levine's Huffington Post article Thinking Critically About Scientology, Psychiatry and their Feud.

Interesting article, but what really got me thinking was the author's commonly enough held opinion that mental illness is a rational response to an insane world, which I am now re-examining. (The schizophrenia diagnosis has made me get around eventually to re-examining everything. It's been a blessing.)

It was R.D. Laing, who made the original insane world observation and people like me have been making this argument ever since. Except that I am more of the opinion now that mental illness is the direct result of not the larger world (society) that most people have in mind, but the smaller world - the child's world - the familiar environment, the family, not some abstract thing called "society." People don't go insane because there is air pollution or poverty in the world. Their suppressed sense of self has made them sensitive to these problems, yes, but people are more likely to go insane because the family environment is polluted with lies or has a poverty of emotional warmth or a tsumani of physical or verbal abuse. People do not go insane because someone else's family tree is warped (who cares?), but they do inherit the emotional resonance that their own family tree passes down.

It is much less troubling, I suppose, for parents and patient alike to accept the idea of an insane world, rather than to accept the idea of insane family dynamics. The insane world view has much in common then with the diseased brain view of mental illness. Both deflect the situation in ways that don't point the finger at any one individual, thus making the situation palatable and guilt-free.

I said to a friend one time when my children were very young and they were all at their most challenging/difficult/wimpy (take your pick), "I like my own children but other people's children I can do without." She heartily agreed that the same applied to her. The brewing period for mental illness is the period of childhood where the family is being formed, imperfectly. Families understand each other on some level, but do not understand the way other families relate with each other.

Society is insane, but "mental illness" begins and ends at home. The "mental illness" usually manifests when the older child leaves his small world and steps out into the threatening larger one. Rather than the individual  directly confronting past hurts, psychosis feels like a "safe" way to express accusations, that if expressed honestly and directly, would trouble other family members.

Exceptional Mediocrity: Why Are Drug Reps Hot?

I was playing around with Facebook and spotted this.

Exceptional Mediocrity: Why Are Drug Reps Hot?: "

FDA finds new ways to increase Merck's revenues

FDA approves wider market for schizophrenia drug Saphris.

The drug was first approved in August 2009 for treating acute schizophrenia episodes in adults and acute mania or manic-depressive behavior in adults with bipolar disorder.
 Merck says the FDA now has approved Saphris for ongoing treatment of schizophrenia and for treating acute mania or manic-depressive behavior in adult bipolar patients along with lithium, a mood-stabilizing drug often used to treat mania, or the antiseizure drug valproate.

This raises the perennial, but naive question "Who exactly is the Food and Drug Aministration working for?"

This news item has been brought to your attention courtesy of:

Sponsored LinksBipolar Depression Info

Learn About a Treatment Option & Get Questions to Ask Your Doctor.
http://www.aboutbipolardepression.com/

Living With Bipolar?

Find Helpful Tools and Resources. Sign Up for a Support Program Now.

BipolarTreatmentInfo.com


Buy a link here

"Evidence" that does stand up in court

Lately, I have noticed how often the DSM label is used in court in an attempt to either exonerate the person from assuming full responsibility for the crime of which they are accused or else to win sympathy from the court against the person with the label. In the past I have agreed with the general insanity defence, but am not at all convinced that parsing the insanity defence down to the specific "disorder" is a wise idea. In fact, the more I see this happening, the less I am convinced about the insanity defence. I see this being used more and more as an "out" for people who are not at all criminally insane or as a vehicle to convict the person you have a grievance against. Both sides are smart enough to know that the DSM carries the weight of "expert opinion."

Since the more esoteric labels weren't in existence much before the 1990s when pharma cemented the idea of the diseased brain in the public consciousness, it is axiomatic that their use in the courtroom has skyrocketed.

Last week-end's Financial Times has an absolutely pathetic piece of journalism on Narcissistic Personality Disorder. Since the average reader of the Financial Times is supposedly a London investment banker, I feel this article was written more to titillate than to inform. The article begins with an anecdote about an enraged husband who threatens his wife with a gun when she decides to leave him. He backs off when she calls her father and later denied threatening her and the charges were dropped. At the divorce proceedings "a social services report diagnosed Rob with narcissistic personality disorder." Why am I not surprised that the party seeking the divorce will try to pathologize the spouse's behavior through "expert" testimony. The DSM is their friend in court.

The FT articles goes on at length about NFP as if it were a clinical disease (classified as a cluster B or "dramatic" disorder, as opposed to a cluster A "odd" disorder (paranoid and schizoid) and cluster C "anxious" disorders such as dependent disorders and OCD). It claims that NPD disorder is "diagnosed" when it it really apparent that there is no diagnosis, only "opinion." The article demonstrates that even though "there is no laboratory test, no genetic predisposition, no specific types of people more susceptible than others," a non-existent disease or disorder such as this will still stand up in a court of law. In my opinion, the social services report in the divorce case is tantamount to "hearsay." Actually, much of the FT article struck me as hearsay evidence. We are supposed to believe the nasty things that someone else says about a husband, parent without our actually knowing them ourselves.

The author of the article writes while keeping a straight face "The disorder, formerly known as megalomania, affects 1 per cent of the population and up to 16 percent of the clinical population. It is not easily discernible to the untrained eye, partly because a degree of self-love is essentially healthy . . . . " The article claims that this disorder is found frequently in the higher reaches of politics, finance and medicine, and, with no basis, claims that there is no cure!

Should this fuzzy labelling of a disorder that works well for many really have clout in a court of law? Should law abiding people who carry the label of schizophrenia and bipolar disorder object to their label being bandied about in a court of law to excuse someone else's behavior? If these are phony diseases, as I firmly believe, then their presence should be struck from the court room, or certainly not carry the weight of "expert evidence." Sensationalistic or lurid court cases where schizophrenia and other so-called disorders are invoked, condemn the vast majority of people with these labels who would no more kill someone, drive drunk or steal than the next person. They are stigmatized with the larger public courtesy of the DSM being allowed in the court of law.

"Expert evidence" in these cases claims to justify  that there is no other motivation for the behavior beyond the "disorder."

Political correctness just another form of social control

Kris Ulland's recent post on Scientology involvement with Thomas Szasz's Citizens Commission on Human Rights has been generating a lot of interest. I made a remark in one of my comments to her post that politics makes strange bedfellows. Organizations and politicians may disagree vehemently with another's policy planks, but when their interests occasionally coincide they are more than happy to get into bed together to further a common goal.

Szasz's reputation as an anti-psychiatrist is built on his disagreement with the idea that mental illness is a disease. I have come to the same conclusion myself, based on my observations of my son's behavior. It walks like a duck, it quacks like a duck, but it is not a duck. It looks in many ways like a physical illness (slow and odd movements, incoherent speech, etc.) but it is not a physical illness. It didn't really matter if Chris was on drugs or off drugs, the behavior was the same. I am glad to report that this is not the case now.

Wikipedia on Thomas Szasz:

While people behave and think in ways that are very disturbing, and that may resemble a disease process (pain, deterioration, response to various interventions), this does not mean they actually have a disease. To Szasz, disease can only mean something people "have," while behavior is what people "do". Diseases are "malfunctions of the human body, of the heart, the liver, the kidney, the brain" while "no behavior or misbehavior is a disease or can be a disease. That's not what diseases are" Szasz cites drapetomania as an example behavior which many in society did not approve of, being labeled and widely cited as a 'disease' and likewise with women who did not bow to men's will as having "hysteria"[9] Psychiatry actively obscures the difference between (mis)behavior and disease, in its quest to help or harm parties to conflicts. By calling certain people "diseased", psychiatry attempts to deny them responsibility as moral agents, in order to better control them.

Szasz, in his later book, The Manufacture of Madness (1970) writes:

The best, indeed the only, hope for remedying the problem of "mental illness" lies in weakening - not in strengthening - the power of Institutional Psychiatry. Only when this peculiar institution is abolished will the moral powers of uncoerced psychotherapy be released. Only then will the potentialities of Contractual Psychiatry be able to unfold -- as a creative human dialogue unfettered by institutional loyalties and social taboos, pledge to serving the individual in his perpetual struggle to rise, not only above the constraints of instinct, but also above those of truth.

I worked for many years in politics at both the national and state levels and directly for a couple of political parties. I have a certain sympathy for Scientology, not because I am a member, which I am not, but based on the experience of being the brunt of political correctness when the going gets down and dirty in politics. The party in perpetual power where I worked, would float all kinds of accusations against the party I worked for - racism, sexism and religious fundamentalism are the big three that generally make middle of the road people, tempted to shift allegiances, scurry right back to their comfortable center line. Do I want to be a Scientologist? No, but that doesn't mean that I disagree with everything they have to say. Their stance on psychiatry (anti-drugging and anti-coercion) is one of the things they stand for that strikes me as appropriate.

Thomas Szasz suffers from the same political problem as any person or organization whose opinions are not held by the mainstream. He is politically incorrect by North American standards. I may be stepping on a lot of Hungarians' toes here (hi, Tibor!), but Hungarian's (like many of their European counterparts) are more often than not politically incorrect. Europeans have a long history of being at the mercy of the state and of those who enforce state control. Who are Szasz's critics? Institutional Psychiatry, of course and those who are under its power.

I began to really appreciate Szasz when I was looking for something positive to believe in about my son's prospects. Institutional Psychiatry was hinting that Chris was a lifer. It is odd that this psychiatrist, who mainstream psychiatry kept insisting was a heretic, was actually a psychiatrist who seemed to put the rights of the individual first. He seemed very much on the patient's side. From my limited experience with institutional psychiatry at the time, I never got the feeling that it understood (had empathy for) the patient.

Szasz believes that the label of schizophrenia is like being persecuted for being a witch.

A direct line of progresion can be traced from the witch's marks to the so-called stigmata of the hysteric, and, most recently, to the signs which schizophrenics are made to reveal through projective psychological testing. Each of these "diagnostic" findings is used to incriminate the subject -- as witch, hysteric, or schizophrenic; each is then used to punish him -- by means of theological, medical, or psychiatric sanctions.

He then goes on to say that "While some witches may have survived dunking, no "madman" survives psychological testing." (Read Szasz for dark humor, too.)

The figure of the psychotic or schizophrenic person to psychiatric experts and authorities, according to Szasz, is analogous with the figure of the heretic or blasphemer to theological experts and authorities. According to Szasz, to understand the metaphorical nature of the term "disease" in psychiatry, one must first understand its literal meaning in the rest of medicine. To be a true disease, the entity must first, somehow be capable of being approached, measured, or tested in scientific fashion. Second, to be confirmed as a disease, a condition must demonstrate pathology at the cellular or molecular level.

A genuine disease must also be found on the autopsy table (not merely in the living person) and meet pathological definition instead of being voted into existence by members of the American Psychiatric Association.

The above quotes are from taken from Wikipedia and directly from Szasz's The Manufacture of Madness, Random House, 1970.


___________________
Roughly speaking, institutional psychiatry is imposed on you, perhaps by force of law, while contractual psychiatry is when the individual seeks out a psychiatrist and retains complete control over his participation with the expert.

A question of accountability

Is there an organized effort (lobby?) that pressures the media to disclose the pharmaceutical ties of the people they are interviewing?

The media habit of publishing a story, such as this one, and failing to disclose that some, if not all of  the "experts" quoted have ties to pharma, is just not good journalism.

So, who is forcing the media to be more accountable in this area?

I am doing my bit where I can and so are you, but I would like to know if there are organizations that are doing this more systematically.

Here's what I object to in the NY Times article

I read the NY Times article Child’s Ordeal Shows Risks of Psychosis Drugs for Young. This is a bit of a rambling discourse because I am still feeling quite jet-lagged. I doubt if I'm making my points clearly.

I suppose I should be grateful if focusing on children to highlight the problem with psychiatric drugs will also benefit adults who feel they are being force medicated and overmedicated. Doctors don't seem to be making the mental leap, judging by what I read in the article. Actually, the article made me extremely angry because it seems that the focus on children may be diverting attention from the greater flaws in the drug paradigm system. I am very cranky after reading this article.

If you read the comments section that accompanies this article, you will see that a great deal of the criticism is directed against  the doctors who prescribed the drugs, but equally against the mother who allowed this to happen. Everybody has jumped all over this one and readers have offered up all kinds of parenting advice. Show us an innocent child and we all say, oh, it is obvious that the parent didn't know what she was doing when she medicated this child. All the family needs is counselling, not drugs. True, true, but how does this change when the child is an adult? What seems ridiculously easy to spot in children somehow becomes "a true illness" as soon as they reach the age of psychosis, which is 15 to 25 in men and 25 to 35 in women.

I'll start with the word "young" in the title of the article "Child's Ordeal Shows Risks of Psychosis Drugs for Young." The risks are the same for everybody - weight gain, diabetes, leaking breasts. Why isn't this point made more forcefully? I guess the answer is found in the quote from Dr. Gleason, below. Apparently, there is mental illness for which antipsychotics can be justified.


Dr. Gleason says Kyle’s current status proves he probably never had bipolar disorder, autism or psychosis. His doctors now say Kyle’s tantrums arose from family turmoil and language delays, not any of the diagnoses used to justify antipsychotics.

So, the myth will continue to be peddled by people who benefit from enforcing these labels that there is something akin to true bipolar, autism or psychosis. Where's the scientific validation, doctor, for mental illness? Show me! Dr. Gleason's justifying antipsychotics is opinion based on wishful thinking. It is laughably easy to see that Kyle suffered from poverty, and a medically naive young unwed mother. It is not so easy, but shouldn't be impossible, to figure out that adults with these labels are just children who have aged a few years.

Here's the myth being promulgated in one of the comments to this article. Stephen Reidbord, MD, San Francisco writes: Antipsychotics are tremendously helpful for severe conditions such as schizophrenia, where the benefits usually outweigh the considerable risks. For lesser conditions, the risk/benefit ratio swings the other way.

The benefits to whom, exactly? Prove that they are "tremendously helpful." Where's the evidence? How patronizing.

.....................
“There are too many children getting on too many of these drugs too soon,” Dr. Mark Olfson, professor of clinical psychiatry and lead researcher in the government-financed study, said.

You mean that it is okay to get on these drugs later?
.....................

The article, which is not remarkable because there are so many of them today, has left me furious because it's trying to separate obvious innocents from the older victims of this abuse. Since "Kyle" is a bright happy six year old today, he couldn't possibly have had "real" psychosis. Anyone reading the article would agree. Now what about the over 18s?

How many of us are really excellent parents? Poor parenting? Yes and no. Parenting is difficult no matter who you are. Nobody, but nobody gets it consistently right. Some parents, such as single and divorced parents, are obvious candidates for criticism, particularly if they are poor, and they are forced to bear the brunt of the criticism because their situation is dysfunctional. The public at large gets this, as the comments to the article attest. What the public doesn't often grasp when they get on the single parent bandwagon is that no matter who you are or how old you are when you first have children, having children doesn't give us sudden wisdom. It increases the strain. Just getting married increases our anxieties. Having more children increases stress.

There is a good comment in the comments section from CJ, of Fort Wayne, Indiana. She gets it and is willing to admit that she was struggling, too.

Back in the day (1970) when my eldest son was about 5, I found him difficult to handle, easily distracted and inclined not to obey. Bright and articulate, he nonetheless made me crazy and unable to deal with him, much less his two younger brothers.Around that time, the term "hyperactive" first came into play, a condition with which even his pediatrician was unfamiliar. J. was hospitalized for 2-3 days for observation and then prescribed Ritalin. The results of the medication were that they calmed J. right into oblivion. In other words, it totally knocked him out for the afternoon or... it didn't effect him at all. We never knew which to expect.

We kept him on it for most of the 30-day prescription, at which time it was either strengthen the dosage or take him off it. I opted to take him off it, without consulting the doctor, "asking" permission or anything else. It was breaking my heart to see what was happening to my bright-eyed firstborn.

Although he's had his issues throughout the years, at least I know they weren't caused by over-medication administered by his parents. And today he's a happily married, soon-to-be-45-year-old –– hard-working, responsible and still employed, despite the economic downturn.

In retrospect, his father and I were 23 when we had him, both emotionally young, hyperactive adults prone to nervousness. What, then, could we expect in our little ones?
It appears today's parents don't want to take time to examine themselves, their lifestyles, their parenting skills (or lack thereof) to see what might be affecting their child/ren. In addition, they might look to the schools, who have in many instances effectively taken away all outlets for normal childhood rambunctiousness by eliminating recess and phys ed, and requiring these little ones stay at their desks most of the day.

As for parents and physicians "drugging" infants and preschoolers, well, as they say, you can't cure dumb.

As a nation, we are doing our youngsters a great disservice, substituting drugs for parenting, and placing the blame on others. Parents, take control. Do this by first taking control of yourselves. Your children –– and their future –– is at risk.

The ties that bind

The excerpt below from the CNN article, Growing up bipolar demonstrates planting a certain belief (in this case "disease mongering") by people who most stand to benefit. A quick Internet search revealed that Dr. Charles Raison's Mind-Body Program at Emory University gratefully receives funding from:

Anonymous Donor Support; The Dana Foundation; The Emory-Tibet Partnership; Glaxo Smith-Kline; The National Heart, Lung, and Blood Institute (NHLBI); The National Institute of Mental Health (NIMH); NARSAD; Schering-Plough

Dr. Rakesh Jain is in private practice in Texas.


Is it possible to stop medication?

For the past year, Jennifer has been off of all medications but still sees a therapist, and the family has a relationship with a psychiatrist in case of relapse.

In general, people with bipolar disorder must stay on medication for life because relapses are common, said Raison, who has not treated Jennifer. But some are fine for periods of time without them, he said. (editor: Relapses are not common if you get your act together.)

Jain agreed that some patients who do well can go for stretches without medication, but he has never been able to completely remove a bipolar patient from drugs and say, "you're cured." Bipolar disorder should be viewed as a chronic illness like hypertension or diabetes, which require lifelong management, he said. It is wise for anyone who does go off medicine to continue to see a mental health professional and closely watch for symptoms of recurrence, Raison said.

See also another aspect of The ties that bind

"Nobody was on my side"

I sometimes bring up the idea that it is important to be on your relative's side when a diagnosis has been handed down. I read the CNN article Growing up bipolar and glommed onto the following quote:

Jennifer, the middle child, was always the most sensitive of Konjoian's three children, her mother said. She never had any episodes at school; they usually happened when she felt overwhelmed by her family: for instance, when her siblings picked on her.

"I felt like nobody was on my side. That's kind of how I always felt,"

This child was given a label of bipolar (after initially taking an antidepressant, as is so often the case) and yet, here it is, in black and white, that her behavior was a problem at home, not at school. Her family was driving her crazy. She felt that they weren't on her side. I can identify with this. As a child I was continually angry and lashing out, at home, never at school. It was my family that was driving me crazy and I didn't learn coping skills  until I finally tired of myself and made a vow to stop. Naturally I felt nobody was on my side at the time.

Being on the person's side, seeing life from someone else's point of view, is huge in healing. Most parents are too busy settling disputes amongst siblings to really focus on the child's point of view.

When we landed in the mental health system, after a while I began to wonder who was really on Chris's side. It took me a while, but I finally realized that Chris's perceptions were real, not something that should be dismissed as lunatic ravings. Okay, psychosis is an unusual way to express yourself, but for some people, it is the only way until they master a way of not retreating into psychosis. The doctors claimed they were on Chris's side, but then they referred to him as a patient, they spoke of his delusions, they gave him drugs to sedate him. They encouraged a view of a limited future.

Parents can easily fall into the same trap and will take the side of the doctor, which is a negative and mechanical view of the individual. Ian and I cajoled Chris into taking his meds because the doctors said it was essential. We looked at Chris as if he was the crazy one. We were not on his side. We confused empathy with pity.

After a while I "got it."  I decided Chris was right about whatever it was that was bothering him. He had justifiable cause. Chris's way of expressing himself as a child was not like Jennifer's. His way was quiet and non-confrontational. Everybody has their own way of dealing with anger or fear.

Why are we so eager to believe somebody else and not our relative when it comes to mental health issues?