September 2010 - Rossa Forbes

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.

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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

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.

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*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.**

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*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.