Random jumbled thoughts on cold remedies and antipsychotics

I've been cooped up at home for the past few days with a runny nose and chest that feels like it's winched to the point where a rib bone might break. A friend suggested that I take an over-the-counter remedy, which, at first, I chose not to do, since I rarely buy the non-prescription medication that doctors usually add on to their prescriptions, considering it mostly a waste of money. Either a prescription will do the trick, or it won't.

But, I reconsidered my friend's suggestion because I want to be in good shape for an unusually festive New Year's Eve, and was hoping against hope that the non-prescription stuff worked.

Here's the verdict. Since I am still coughing up a lung and the nose continues to run, and I had no sleep last night, it's hard to imagine that the non-prescription stuff works better than just letting nature take its course. I believe I am no further ahead cold-wise. As I lay on top of my bed and stared at the ceiling this afternoon while sneezing, coughing and blowing my nose, I began to think about - what else? - antipsychotics. If we compare psychosis to a long running and miserable cold, are we better off with the prescription than we would be with "over-the-counter remedies," e.g. the therapies, strategies, and attitudes that I discuss in my blog.

Putting aside the very real concerns about antipsychotic side effects, the best one can say about them is that they sedate in emergency situations. and can be useful in the very short run. "But antipsychotics are prescribed," some will say, "and these prescriptions work," and they might go on to say that everybody knows that there is no cure for the common cold. To which I would answer, and there is no "cure" as such for schizophrenia. Should we believe the pharmaceutical companies when they say that people are better off long term on prescription antipsychotics than they would be using non-pharmaceutical, non-prescription remedies?

Going through the thought processes that I did while lying in bed this afternoon, I can't help but reach the conclusion that the public has been suckered into a willingness to pay for non-prescription cold remedies and prescription antipsychotics.  The common cold is short and psychosis is long, but where is the proof that taking cold remedies or antipsychotics gets a person back on their feet any sooner than they would have if they had just taken normal precautions and sweated it out with e.g. chicken soup, a box of kleenex, psychotherapy or tender loving care from someone who believes that this, too, shall pass.

End of year thoughts

I haven't done a post for quite a while, and I'm not adding my two cents worth much on other blogs and sites for a number of reasons. I'm disengaging more and more from the intense and too often ugly online debates surrounding mental health issues.  I feel that after ten years of searching and questioning, I know what I know about about how to help my son work through "schizophrenia," and I no longer have the mental energy or the patience to convert others to my way of thinking. All I can offer are my own opinions based on my experience with Chris, and if I don't put quotation marks around the word schizophrenia, is the world going to end? Apparently for some people it will. I think an intense debate about the validity of schizophrenia and the drugs given to treat it is a welcome change from the past and is forcing needed change. I applaud the many good people willing to go to bat for those changes, but now I think it's time to stop focusing on the often minute differences of opinion between people we perceive as our enemies; there is a huge risk of marginalizing our growing base of support if we don't reign in the rhetoric. We are attacking people over words and I'm looking for more useful ways for me to contribute.  Even though I feel I have a message of hope about recovery that can be practiced to some degree of success by others, at the same time I feel that I'm not adding anything terribly new to the schizophrenia knowledge bank that I haven't said many times before.

Another reason I haven't posted much is that Chris is almost thirty, and really, it's time I bowed out of publicly recording the latest events as if I were the proud mother of a toddler or grade school student. Why I'll most likely continue blogging is because I like writing personal stories and I like reading personal stories because I think that they have the greatest reader interest and impact. But, by the time my" baby" reaches 30 next month, maybe it's time to NOT to document his every achievement and struggle.

We are living in narcissistic times. Anyone who blogs about or uploads Youtube videos of themselves or their close relatives (check out Holderness family Christmas video) can be accused of being narcissistic, but the trick is to manage to avoid the label by claiming a greater altruism (smiley face goes here). I'm blogging about Chris and me as a public service (and here) of hope to all those families who are struggling to see the light at the end of the tunnel. If it has to be the two of us to bring this message of hope, I'll risk being called a narcissist. There just aren't a lot of blogs right now written by relatives and targeted to families who are uncomfortable with the medical model of the "disease." It is through personal anecdotes from other mothers and fathers where many of us strengthen our hope. I would love to have some competition here in the blogosphere from the hope crowd to counteract all the crowded field of parental scare mongerers.

To end 2013 on an upbeat note, here is a summary of the good things that have happened to Chris and me on our journey this year.

Chris - got girlfriend, broke up with GF, seems to be back with GF, appeared in several theatrical choruses, attended an out of country course in musical theatre production, enrolled in a Monday night acting course, continues to be a member of several choirs, has gained greater ability to stand up for himself and voice his opinions  (Note: All of this did not happen overnight. It has taken several years for him to get to this level of confidence, and he and I both know that there is still work to be done.)

Me - learning that it is never to late to learn something new, enrolled in two online courses about how to practice recovery and sustain hope.

Happy New Year everyone. May 2014 bring you peace, good health, and hope.

A message of hope from Jen Maurer, Managing Director, Mother Bear; Families for Mental Health

Rossa's note: I'm on the Advisory Group of Mother Bear and have taken two of its online courses  on practicing recovery and sustaining hope. I am so grateful to Mother Bear for filling a huge gap in the recovery movement -- helping families to understand and appreciate the human side of psychosis and mental distress. Mother Bear's online courses and Help Hotline, is a godsend. A few months ago my son, Chris, called the hotline when he needed an empathic someone to help him work through his emotional state. He keeps the SOS phone number handy and knows he can be listened to with empathy when he calls.

I've made my donation to keeping the Hope Light brighter and I urge you to consider donating, too. 

Dear friends,

As many of you know, for the past two years I have been working for a labor of love-literally and figuratively-as Managing Director of a new nonprofit, Mother Bear: Families for Mental Health ( http://www.facebook.com/l/9AQHkteVYAQFyM06tzKWpwmutkPIFhY0PAcBmW1oNCX2G9Q/www.motherbearcan.org), which is dedicated to helping families heal from intense emotional distress.

The traditional medical system, friends and other family members have often given up all hope for these families. Not surprisingly, families come to us with barely a flicker of hope left that their loved one will ever recover or that they will recover from the exhaustion and worry that comes from caring for someone who is in chronic distress.

That is what is heartbreaking about my work. Seeing how deeply families are struggling without support.

What is heartwarming is being able to share with families that with support and education, we can help them reduce relapse rates by as much as 75%. Fact. Decades of research to prove it.

Recovery from even severe emotional challenges is not only possible, it should be EXPECTED… with the right support, of which there is precious little.

That’s where we come in. Mother Bear is, quite literally, a light in the darkness for families. 

I am asking you to consider helping us burn our Hope Light brighter by making a contribution of any kind to Mother Bear today (Dec. 3rd), otherwise known as #GivingTuesday.

#GivingTuesday is a movement that encourages people to take collaborative action and harnesses the power of social media to create an international Day of Giving that thrives on the spirit of generosity and amplifies small acts of kindness in the service of changing our world for the better.

Here are just a few of the ways you can help Mother Bear transform lives:

* “Like” us on Facebook (https://www.facebook.com/MotherBearCAN) to spread the word that recovery is possible and to share our healing resources. We are ALL touched by mental health challenges (yes, 1 in 4 of us at any given time!). You may not know whose life you are helping by sharing. Rest assured, you are.

*Post our #GivingTuesday link on your Timeline and ask your friends and networks to do the same.
( http://www.facebook.com/l/dAQFbdTBdAQHs9rNC-boU-5zOIYnx2tXMJm3IxatQPVpwzQ/givingtuesday.org/partner/mother-bear-families-for-mental-health/)

*Call our Hope Line at 1-855-I HOPE 4 U between midnight tonight throughtomorrow Dec. 3 (ending at 11:59 pm) and tell us what brings YOU hope. We’ll share it with our growing network of families on Facebook and Twitter! (I’ll be taking calls from 8 am to 3 pm tomorrow if you want to call and tell me your hope story personally!)

*Make a financial gift in any amount. If you contribute before 11:59 pm on Dec. 3, your gift (and your friends’) will be matched up to $150K! (That is a lot of HOPE!)
( https://www.facebook.com/l/tAQGrQpNyAQGcNugK26MJo6I7u13EWjMs-gm8qDRbwkVYhQ/https%3A%2F%2Fwww.paypal.com%2Fcgi-bin%2Fwebscr%3Fcmd%3D_s-xclick%26hosted_button_id%3DQNGYF76RFWAHC)

Our special goal for this campaign is to secure the resources and staff necessary to increase our Hope Line hours in 2014 so more families can get support when they need it. We are currently the only toll-free Family Mental Health support line in the country.

I'm grateful for your friendship, your support and all the healing work you do in your own ways!

Wishing you all Hope- and Love-Filled, Healthy Holidays!

Jen

The job of hope

Hope is a job, not an amorphous entity that's always beyond our eager grasp. This reality was underscored recently when I enrolled in the Family Healing Together course, "Recovering our Hope."

I used to have a misconception about hope. I thought it was something that you went to church to pray to get, or something that people say when what they really mean is that hope is lost. "Well, there's always hope," people will say, and you know right then and there that the hope vessel is sunk.

No sir. Hope is a job that you get up every day for and go to work for. You learn how to have hope and once you do, you learn how to practice it, manage it, and adapt it to your own situation. Hold it, examine it, work with it.

What does it look like? Well, here's an example. Maybe you are worried that your son or daughter will never, never, ever, be able to put the pieces of his or her life together, because some part of his or her recent behavior has caused you to doubt. Maybe it's yet another missed appointment or not being able to get out of bed in the morning. Maybe it's a lack of concrete achievements or crippling self-doubt. Maybe it's all of that or something else.

So, you start by reframing - turning your own negative perceptions into something positive, because if you look closely, you will see that your relative is making choices and perhaps even moving forward in some crazy way that eludes you. You may realize that there is something you can offer them that helps them flourish. It comes from YOU.

You get down on your hands and knees and blow on the embers when the flicker of hope is dying. Maybe all it takes is a post-it note, or a rigorous mental exercise to focus on the positive and ignore the negatives. One thing I do is to keep returning to my read what my role models, people who also share a positive perspective, say. 

Here's one such positive perspective from the course, which is post-it note worthy:

"Suspend judgement and consider the possibility that even your most outlandish hopes can not only nourish you, but can also help you flourish." 

Sockpuppets, astroturfing and anti-stigma campaigns

Vocabulary words for today: Sockpuppet, Astroturfing 
Help me add more search words to my limited search vocabulary. Pharma's public relations teams are always finding new ways to convince the public that demand for its products is grassroots. Anti-stigma campaigns are one example. In the 1990s Eli Lilly channeled money through the The World Psychiatric Association and NAMI to launch an anti-stigma campaign. The "crowdfunding" concept today is supposed to be grassroots fundraising, but there is a huge potential for abuse, e.g. astroturfing fake donations. 

Pharmaceutical Industry Agenda Setting in Mental Health Policies

Richard Gosden and Sharon Beder

---

Citation: Richard Gosden and Sharon Beder, 'Pharmaceutical Industry Agenda Setting in Mental Health Policies', Ethical Human Sciences and Services 3(3) Fall/Winter 2001, pp. 147-159.

Excerpt 

The use of sophisticated public relations techniques for setting political agendas has become a standard practice in most advanced democracies. The consequences are slowly becoming apparent. The system of representative democracy is being reshaped into a new kind of "managed corporatocracy" in which public opinion and government policy are custom-made products that can be shaped, packaged and sold by skilled public relations experts. 

Setting the Agenda for Policy on Schizophrenia

An extended campaign to set the policy making agenda in regard to schizophrenia offers a particularly good illustration of how these tactics work. All of the pharmaceutical companies involved in this agenda setting campaign have introduced new, atypical neuroleptic drugs for schizophrenia treatment onto the market over the past decade. These new drugs had been developed for two main reasons: 1) patents for the older generation of drugs were expiring and cheap generics were coming onto the market; and 2) the older generation of schizophrenia drugs had fallen into disrepute for being both ineffective and dangerous. However, in introducing the new drugs the pharmaceutical companies were confronted by two difficult public relations problems: (a) the new drugs are many times more expensive than the older drugs and, (b) according to critics, they are not any more effective or safer than the old drugs they replace. (Breggin and Cohen, 1999, pp. 76-82).

The pharmaceutical companies wanted to maximize their profits in what appeared to be a potentially critical environment and a tight market. They decided the best approach would be to find ways to expand the size of the market. Hitherto the market for schizophrenia drugs had been restricted by diagnostic conventions, on the one hand, and civil liberties protections on the other. Until recently diagnostic conventions generally limited the recognition of schizophrenia, and therefore the application of neuroleptic drug treatment, to symptoms which indicate psychosis. The agenda setters determined to expand the market by breaking this convention and promoting the concept of an additional pre-psychotic phase of schizophrenia which requires preventive treatment with their new drugs. To further expand the market they also decided to wage campaigns to weaken civil liberties protections and thereby increase the number of people who could be treated involuntarily.

The overall solution was the development of a two-fold public relations campaign that is still in progress. The first part involves harnessing support groups for relatives of people suffering from schizophrenia as the driving force for an advocacy coalition. This has been achieved by carefully focussed funding of these organizations. (Gosden, 2001, pp. 94-97). Once they were made dependent on drug company ‘sponsorship’ they could then be used as public relations front-groups to assist with planting stories in the media about the efficacy and safety of the new drugs and about claims that schizophrenia has supposedly been scientifically proven to be a brain disease requiring urgent drug treatment at the earliest signs. A ready example of this practice can found at schizophrenia.com (schizophrenia.com, 2001a) which purports to be "A Not-for-Profit Information, Support and Education Center" representing consumers. However, schizophrenia.com acknowledges on its web site that it is funded by Janssen Pharmaceuticals. (Schizophrenia.com, 2001b). The slant on schizophrenia being promoted by drug company-funded organisations like schizophrenia.com is intended to impact on governments as expressions of public interest advocacy and to position the new drugs as preferred methods of treatment by government mental health services. 

An aspect of the campaign involves funding selected psychiatric researchers to promote the doubtful belief that schizophrenia must be detected and treated in a pre-psychotic stage to avoid brain deterioration. (Gosden, 2001, pp. 224-247). This line of argument has the potential to vastly expand the market for schizophrenia drugs and has already led to the development in Australia of government-sponsored preventive treatment programs for schizophrenia, which utilize the new drugs.

A key element of the PR strategy involves funding from the drug company Eli Lilly being channeled through both the World Psychiatric Association (Rosen et al. 2000) and NAMI (Silverstein, 1999; Oaks, 2000, p. 14) to mount an anti-stigma campaign. The thrust of the anti-stigma campaign is to advocate for the elimination of discrimination against people diagnosed with schizophrenia, so long as they are taking medication.

Meanwhile, in what appears to be a coordinated strategy, the Treatment Advocacy Center (TAC), which was originally established as branch of NAMI, has been feeding a very different, but complimentary, line to the media and the public about the dangerousness of untreated schizophrenia. This line involves associating untreated schizophrenia with news stories about violent behavior (Torrey & Zdanowicz, 1999, p. 27A) and promoting wild hyperbole about the murderous intentions of untreated schizophrenics: "Violent episodes by individuals with untreated schizophrenia and bipolar disorder have risen dramatically, now accounting for an estimated 1,000 homicides annually in the United States" (Treatment Advocacy Center, 2001a). This approach is intended to send an agenda setting spin in the opposite direction by scaring the public and impacting on governments as a law and order imperative. The policy intention with this counter spin is to weaken civil liberties protections in mental health laws in order to increase the number of people eligible for involuntary treatment. 

Today's obituary

Augusto Odone, Father Behind ‘Lorenzo’s Oil,’ Dies at 80

By PAUL VITELLO

Published: October 29, 2013 

Augusto Odone, an Italian economist with no medical training who flouted scientific protocol and doctors’ advice to help concoct an experimental medicine that extended the life of his terminally ill son and inspired a Hollywood film, “Lorenzo’s Oil,” died on Friday in Acqui Terme, in northern Italy. He was 80. 

J. Michael Bishop, an American microbiologist who shared the 1989 Nobel Prize in Medicine, described “Lorenzo’s Oil,” the film, as misleading in its claims about the oil extract and “deeply troubling for its portrayal of medical scientists as insensitive, close-minded and self-serving” — a viewpoint he found to be encapsulated by one particular line spoken late in the film by Lorenzo’s father: “These scientists have their own agenda, and it is different from ours.”

But, writing in The Bulletin of the American Academy of Arts and Sciences in 1995, Dr. Bishop cautioned fellow scientists against dismissing the public sentiment the film conveyed. “Here is a warning science cannot take lightly,” he wrote, “a warning to explain ourselves more clearly, a warning even to change some of our ways.” 

Read the full obituary here 
Read more here 

Walks on the Margins, a Story of Bipolar Illness

5.0 out of 5 stars A story of creativity, October 27, 2013 By  Rossa Forbes (cyberspace) - See all my reviews Amazon Verified Purchase(What's this?) This review is from: Walks on the Margins, a Story of Bipolar Illness (Paperback)

When I review memoirs of mental illness, I feel that I should say first where I am coming from and why I like to read these kinds of memoirs. (There really should be a name for this genre.) I am the mother of a son, a little younger than Max Maddox, who was diagnosed with schizophrenia and who is following his own artist's path, with his mother in tow. Like Kathy Brandt and other mothers, I've been working on a memoir, too. The focus of mine is finding out how best to help my son, learning about what constitutes good recovery and how to get there. How to get there often involves finding out what others are doing, and how this works out for them or their relative. I bang my personal drum against the purely medical model, which until recently, has been the dominant model propped up by the pharmaceutical industry aided by an unquestioning public. My writing style tends to be rather conventional, and factual, although I'm struggling to make my memoir worthy of the journey my son and I have taken.

With this preamble out of the way, I am flat out awestruck by the mother and son writing team, and frankly envious. Walks on the Margins takes serious literature turns, outstanding in a memoir. I'm thinking road trip writing --authors like Jack Kerouac, J.D. Salinger, Hunter S. Thompson. Not to forget Mark Vonnegut.

This is the painter's version of 21st century Chicago, as told by Max.

"In the still electric air, the sun slid beneath a satin graphite carpet, dark gray hooks dipped toward the horizon. Arms bent, shoes off, I sent doves up to the sky in a swirl as the sun broke once more, splashing the icon on a Baptist black velvet canvas, falling to my knees I grasped for this dream coming to me so slow, leaving me to doubt.

"Are you okay?" Four teenagers wondered why I was bawling and curled up in the dirt among discarded drug paraphernalia.

"I need an ORANGE," as in vitamin C and citrus fruit, lifted from Cezanne's bowl, the shape of release from the great weight of my role. But of course this misadventure had not befallen us all, which may have been all that ever mattered, and off they went with something to consider between them.

"They would call me crazy, assuredly they had done so already. The difference I guess was that something within them remembered that God does not like to offer proof precisely when it's asked of Him. Or then again perhaps they simply knew the master plan better than I, which I couldn't now distinguish from my own."

The mother Kathy's voice is just as good in its own way, tempered of course by practicalities of immediate focus of struggling to keep the wild, paint-the-town excesses of her son in check."

Where I find the book slightly disappointing is toward the end. I was really enjoying the trip and then felt like I was dumped on the curb without explanation, because, unbeknownst to me, the end of the journey was in site. We're rolling along the road, picking up speed to some destination or resolution or thoughtful self-reflection, and suddenly Max graduates from college, seems to transition fairly effortlessly to graduate school and they're back home in the driveway. Kathy speaks about recovery, but I wish she had said more about how she thought she and Max arrived at that point. She has taken National Alliance on Mental Illness (NAMI) Family-to-Family program , which gives her the institutional view of how recovery is possible:

"By the end of our twelve week class, many had let their anger go and quit blaming their loved-ones. And we'd stopped blaming ourselves. We'd accepted the "new normal" of life with mental illness. We left that last night with two-inch thick binders filled with information about mental illness, about what to do in a crisis, and how to communicate, problem solve, and take care of ourselves. We'd become educated and empowered. We'd learned that recovery was possible, and that we weren't as alone as we'd once thought."

That's what's being taught? Accept that Max is mentally ill, don't blame him, and learn to navigate bureaucracy? After the intense, searing experience that somehow worked out reasonably well for Kathy and Max, but with few clues as to why or how. There is so much more to the mechanics and the joy of "recovery" (or whatever we want to call it) that involve daily exercises in patient, faith, hope, empathy that radiate outward to embrace the whole family. These can be taught, but we first have to come from a believing place that our relative is not sick or diseased. While it is true that everyone has to tell their story in their own way --and this is a great story-- it is exceptionally great because of the art and the passion. Am I being romantic about mental illness if I prefer to focus on what's right about an individual rather than what's wrong with him? Is it better to focus our efforts on nurturing the artist rather than getting bogged down by the constant background noise? (Dubious science, harmful diagnoses, and money, always money issues.)

This book was obviously several years in the making, and a lot has changed. To gain a better understanding of recovery we need to start by rejecting the diseased brain, chemical imbalance, genetic pre-disposition to mental illness theories in favour of what many would say is the romantic idea that our problems/our humanity/our greatness are more home-grown. I say this simply because in recent years the science behind the "evidence" has been exposed as tenuous, flat out wrong, or simply wishful thinking.

Here's an American Psychiatric Association news release from May 2013.

"The promise of the science of mental disorders is great. In the future, we hope to be able to identify disorders using biological and genetic markers that provide precise diagnoses that can be delivered with complete reliability and validity. Yet this promise, which we have anticipated since the 1970s, remains disappointingly distant. We've been telling patients for several decades that we are waiting for biomarkers. We're still waiting."

That's enough drum banging on my part for now. I highly recommend this book. The writing is a delight. 

You can order this book at Amazon.

Effective family support — Krista MacKinnon on Madness Radio

October 30, 2013 by Will Hall

How can family members help a relative in extreme crisis – instead of worsening the situation? Is there a way out of treatment power struggles and arguments about “insight”? And what do families need to change about themselves? Psychiatric survivor Krista MacKinnon, formerly at Toronto’s Family Outreach and Response program and now Director of Practice Recovery, discusses practical methods for turning family relationships into tools for healing. See also: Family Outreach and Response and Krista MacKinnon

Visit the Madness Radio to download this interview.

What's love got to do with it? (Everything)

Chris has been testing a mammalian neurohypophysial hormone, secreted by the posterior pituitary gland, that acts primarily as a neuromodulator in the brain, a.k.a. oxytocin. (Not to be confused with Oxycontin!)

Oxytocin is available in the form of a nasal spray to be taken twice a day.

Chris reports feeling quite “good” and his enthusiasm level does seemed to have perked up. Seeing an opening, I jokingly (but not really) suggested that he change his phone message, which right now sounds like his best friend just died. Why not record, “Hi, This is Chris! Leave a message!”

Oxytocin is the “love hormone,” so how can I put this delicately? Anyone who hopes to be in a relationship could, umm…. use a dose of it because it’s linked to orgasm, pair bonding, social recognition, and trust and empathy with outsiders. Perfect!

The globalization of American style thought campaigns

I am confused by mental illness stigma campaign messaging.  I “get” human rights abuses, I “get” age and sex discrimination; there are legal recourses for these in many countries. I understand prejudice when we’re talking about discrimination, but anti-stigma campaigns are a different beast. Where are we going with mental illness anti-stigma campaigns, and why?  

These campaigns talk about “changing the conversation” about mental illness, which means, to my mind, at least, that they have an agenda to infiltrate minds. Anti-stigma campaigns aim to mold people’s thoughts to conform to the latest fashions and trends, and they encourage people to want to sign onboard, to be part of the “in” crowd and not a self-stigmatizing small minded misfit, a.k.a. a bigot. You want to be invited to the right parties? Check your ability to question the sense of what is happening at the door.

Anti-stigma campaigns are peculiarly American in origin, but adopted by many English speaking industrialized countries. Canada comes to mind, as there is less resistance there to American messaging  due to its geographic proximity and slavish desire to be invited to the noisy party going on right on its doorstep. Anti-stigma campaigns have heavy political undertones, and, with politics comes money. They should not go unchallenged, but they are extremely hard to find out what the real agenda or organization may be behind them. They appear to me to be essentially marketing gimmicks to rebrand thought in ways that benefit certain interests. Yes, in the case of mental illness anti-stigma campaigns, I’m heading in the direction of pointing a finger at pharma, without being able to get at solid evidence. (Please forgive me for not putting the requisite quotation marks around mental illness, a stigmatizing term if there ever was.)

What message are we supposed to take away from people wearing tee-shirts that say “bipolar” next to tee-shirts that says “sister”?  Or actress Glenn Close saying “schizophrenia, schizophrenia, schizophrenia, schizophrenia. See, it has no meaning?”  What would people in India, Thailand, France or South Africa take from this messaging? They would probably be confused. They may not have labels for their relatives. They’ve got their own understanding of mental illness, and, judging from the World Health Organization’s findings that recovery rates are much higher in the developing world than in Western industrialized countries, these people must be doing something right, stigma and all. 

On World Health Day (Thurs. 10 Oct.), I watched the documentary film Hidden Pictures, directed by, and narrated by, Delaney Ruston, M.D.  

From the official website: "Artistically crafted, with unforgettable characters, Hidden Pictures is unprecedented in it's (sic) scope. The filmmaker, who grew up under the shadow of her dad's mental illness, takes us on her journey to uncover personal stories in India, China, Africa, France, and the US. Moments of profound frustration and unparalleled compassion emerge. Ultimately we witness the incredible change that individuals such as actress Glenn Close are bringing about."

I had trouble with this film on several levels, despite its offering some interesting glimpses into different countries’ mental health systems, and their shortcomings. In Thailand, a person can be locked up indefinitely on someone else’s say so, without legal recourse. That’s a human rights issue. In the East, face saving and respect for one’s elders can override human rights concerns. That’s an ingrained cultural issue. South Africans seek out the advice of traditional healers, with predictably mixed results. That’s cultural, too. In India, there is intense pressure not to divulge an illness because doing so has severe implications for marriage prospects. Culture, again. France has very well developed medical care and social systems, but unemployment is high, and it is especially difficult for anyone, who is out of work for several years to gain a foothold in the job market. That’s cultural, but also economic.

Glenn Close, who founded the Bring Change 2 Mind anti-stigma campaign, is a hint that the viewer of this documentary is about to be subjected to the export of a Westernized biochemical view of depression, bipolar disorder and schizophrenia in countries as diverse as India, Thailand, South Africa, and France. Bring Change 2 Mind’s mission is tailored to a pharma only approach, without having to say so: To end the stigma and discrimination surrounding mental illness through widely distributed Public Education Materials based on the latest scientific insights and measured for effectiveness. To act as a portal to a broad coalition of organizations that provide service, screening, information, support and treatment of mental illness.

There is more than a whiff of pharma in Hidden Pictures.

Delaney Ruston's credibility problem in developing countries with their own cultural traditions, and better track record in overcoming mental illness, is that she is an American M.D., schooled in the biochemical model of the "disease," Her medical training has taught her that people with schizophrenia who now seem “normal” must have been misdiagnosed! (It’s there in the film.) In one scene, Dr. Ruston, as the narrator, refers to "the best medical care" as we simultaneously see boxes of prescription drugs being put on a shelf.

Dr. Ruston has cultivated ties to celebrities like Close and former U.S. Senator Patrick Kennedy, who also appears in the film —red flag warnings that money, power and industry are trying to gain international respectability through the seemingly innocuous footage of a film about compassion and caring. The American style Ruston brings to the film has a Hallmark card feel to it (so do pharma ads), the narrator and her camera focusing on how alike we all are, no matter where we live. Well, yes, in many ways that's true. I feel good about that, I don't feel good about how scientifically speculative information about the biochemical nature of the major mental health problems is being spread through a stealth campaign called stigma.

A feel good scene shows middle school children in the International School in Delhi "overcoming stigma" by learning about mental illness and the brain. We see brain charts and a kid who hasn't a clue that he is learning science that is merely wishful thinking at this stage, spouting the usual stuff about the biochemical nature of mental illness. The teacher takes an active, nurturing role in pushing the non-existent science. These carefully cultivated celebrity connections can open international doors, and not just for filmmakers.  I'll bet a lot of the parents of the middle school kids work for pharmaceutical companies in Delhi.

The real life stories of people struggling with mental illness were interesting, don’t get me wrong, so from that viewpoint, it is forty minutes well spent. But, I do strongly suspect that there is a hidden agenda behind the hidden pictures. Getting people and organizations to talk about stigma is pharma’s social marketing technique. Superficially, it seems harmless, but it also seems very much about getting drugs to some of the world’s most populated countries.

See also Chaya Grossberg’s excellent article Is a Little Stigma Better Than None?

The Commitment Plan App for the namiPhone

from NamiDearest, a satirical blog that brilliantly skewers NAMI-think. 

Introducing the Commitment Plan App for the namiPhone!

Posted on October 1st, 2013

WHAT IS A COMMITMENT PLAN?
A commitment plan is a list of sneaky strategies and social manipulation techniques that family and friends can use when they are tired of dealing with a mentally ill loved one. It helps them not have to listen to or empathize with their loved ones thoughts and feelings. The plan is brief, is in the mommy’s own words, and is easy to read. It is an emergency plan for getting annoying loved ones committed.

WHO SHOULD HAVE A COMMITMENT PLAN?
Anyone who has an annoying and/or mentally ill loved one.
Clinicians can collaborate with mommies to develop the Commitment Plan™. Mommies can also develop plans on their own.

IMPLEMENTING THE COMMITMENT PLAN
There are 6 Steps involved in the development of a Commitment Plan™.

Read the rest of it here.

Voices from my files: Who do you trust?

September 2005

Dear Dr. X,

I understand from talking to Chris today that he is about to get a refill of both his Clozaril and his Abilify. We are concerned that at this point, with the therapeutic vitamins and minerals he is taking, that he is over-medicated (difficulty getting dressed, slower speech, etc.) and this will impact him when his course begins next week. With Chris’s agreement and with your blessing, we would like to try to help Chris achieve optimum recovery through nutritional interventions while reducing his dependency on prescription medication to the minimum amount needed to insure good mental health. Of course, the psychotherapy that he receives through your day program is so important to Steve's recovery process. [forbes1] 

Best regards,

Rossa Forbes

Dear Mrs. Forbes,

Thank you for that information. I’d like to respond to you in a few words: Chris is not doing so well, my hypothesis is that beginning a course at the university is a stress factor [forbes2] and he is now experiencing more anxiety. Our clinical observations suggest that we would increase the Clozaril [forbes3]  and not decrease it. There seems to be a paradigm incompatibility with the introduction of the vitamins alongside the prescription medication, which could also be a problem for Chris: Who to trust.

Under these circumstances, I am available to see you this afternoon at 4 o’clock in my office.

Best regards,

Dr. X

Medication to "treat" the illness to date: Risperidone, Effexor, Abilify, Clozaril

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 [forbes1]My way of trying to keep on the doctor’s good side, after  contradicting him on the medications

 [forbes2]Made me feel that, in the doctor’s opinion, Chris would never be able to tackle a course at university level. Quite crushing at this stage.

 [forbes3]The usual hospital practice, instead of trying to help relieve anxiety in a non-clinical way.

Voices from my files

I have a file in Microsoft Outlook where I keep all the stuff related to my correspondence with Chris's doctors, going back to 2003 when Chris was hospitalized at CAMH in Toronto, and continuing on through the two year day program he was enrolled in from 2004 to 2006, until the present. This time span allows a glimpse into how biological psychiatry was carried out in hospitals, with its constantly changing medications and dosages, its reliance on E. Fuller Torrey as THE schizophrenia expert, and its lack of constructive engagement of the family, to outline just a few of its problems. We are perhaps looking back on the beginning of the end of psychiatry as we knew it. Even within the time span cited, I have seen changes for the better taking place as the  tenets of biological psychiatry at all costs have been challenged. I like the way Eleanor Longden put in in her recent exchange with  psychiatrist  Allen Frances.

What I endured so disastrously was the application of a reductionistic biomedical model that is practised in numerous hospitals in the Western world. Voice-hearing was seen as a meaningless symptom of disease - leading to coercive, over-zealous prescription practices, the privileging of biology over psychosocial circumstances, and the overstating of medication's effectiveness whilst minimizing both its limitations, and the hazards of long-term use.

Over my next few posts, I'll be dredging up some of the e-mail exchanges I have had with Chris's doctors. Here are some messages from them dating from his time at CAMH, a time where I knew very little about what was happening to Chris, and when my husband and I just took what the doctor said at face value. I have the luxury of going  back and putting in my own comments (see footnotes)  based on what I have learned in the intervening years.

Dec./Jan./Feb. 2003/4 (3 month hospitalization)

CAMH doctor

The usual therapeutic range of dosages of Risperidone is between 4 and 6mg per day, although some people may respond to even higher doses. Chris is currently at 4mg, the lower end of that range. He had a good response to a lower dose of the medication, but his response has plateaued and currently is actually not doing as well as he was even a week ago.  Given our observations and his reported thoughts and perceptions, there is very little question in my mind as to the diagnosis of Schizophrenia.  [forbes1] 

CAMH doctor

Chris has identified a number of religious and existential themes

recently, and I also believe that he may benefit from speaking to someone about these issues [forbes2] . I know that he has shared a strong relationship with Father Strand in the past, and we have asked him if he would like for us to request that he visit Chris.  We will endeavour to make these arrangements for him according to his wishes.

CAMH doctor

During this period of recovery, as a family, to best support Chris it is important to become familiar with the illness and also the existing treatments [forbes3] and the vistas for new strategies in the future.  Some the books that I have found helpful are Surviving Schizophrenia by E. Fuller Torrey [forbes4]  as well as Living and Working With Schizophrenia by Thornton, Jefferies and Seeman.

About halfway through his stay at CAMH, after withdrawing his application for the Review Board, withdrawing from his university, and having narrowly avoided electroshock treatment because he stopped eating, Chris’s doctor writes:

With the increased clarity of his thoughts, Chris is also reporting that he is feeling depressed with poor appetite, energy and decreased enjoyment in life.  The magnitude of the thoughts and feelings that he describing and his clinical presentation at this time, is suggestive of a Major Depressive Episode.  It is unclear what the relative contributions of his depression and psychosis to his overall clinical presentation at this time. Depression can occur with psychosis and the depression is treatable with the addition of medication [forbes5] to target his mood, energy and appetite symptoms. With your consent, we propose to add Venlafaxine (also known as Effexor XR) in addition to his existing Risperidone, at a dose of 37.5 mg once a day.  The usual target range is from 75mg to 300mg once a day.  We anticipate that we would start to see a response in his depressive symptoms within 3-4 weeks of starting the medication.  The typical side-effects include nausea, insomnia and perhaps restlessness, which are usually time limited (less than 1 week) and responsive to alteration in the dosing strategy e.g. with food, morning vs evening dosing.

Medication to "treat" the illness to date: Risperidone, Effexor

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 [forbes1]Diagnosis based on what the doctor thinks is going on in someone else's head. Not very scientifically rigorous.

 [forbes2]Logically, shouldn’t that person be you or another psychiatrist?

 [forbes3]The best way to support someone as a family is to see the illness?

 [forbes4]That’s about all that was available in 2003. 
[forbes5]Just meds? No thoughts of actually empathically  listening to Chris?