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.

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. 

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

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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.

The question NAMI families aren’t asking

I am reprinting psychiatrist and psychopharmacologist  David Healy’s most recent blog post about the Colorado tragedy. I sprung into action by posting something that I generally try to avoid on my blog – namely heightening the already considerable anguish that patients and family members are experiencing re the role of medications in treatment.  But, David Healy raises some extremely apt points in his essay that you don’t hear coming from the media or the general public. They certainly aren’t coming from NAMI. In his blog post The Colorado Tragedy: What Families are Asking,  NAMI Executive Director Mike Fitzpatrick trots out the same old yada yada yada  about mentally ill people being no more violent than others, but then goes on to say:
“The Surgeon General has acknowledged that the risk of violence among individuals with mental illness increases to some degree in the case of substance abuse or psychosis, a symptom which typically involves a “break with reality” through paranoia, hallucinations or delusions. Social withdrawal may precede such breaks. Early warning signs of psychosis, particularly in the year leading up to the break, may include:”

(then more YADA YADA YADA about early warning signs follow in his post.)

Nowhere does it occur to the Executive Director of NAMI to question the fact that psychotropic medication prescribed by a psychiatrist is a legally sanctioned brain altering chemical that changes individual brains in unknown ways. The Surgeon General hasn’t acknowledged this one yet, and the Executive Director of NAMI isn’t questioning where the Surgeon General chooses to point his flashlight.
My youngest went to the funeral of a high school friend a couple of weeks ago who was run over by a train. Details as to what may have caused him to fall in front of a train were murky. He was being treated in a rehab clinic for addiction (big surprise to his friends from school) and my son had heard something about the drugs they were giving him slowing him down so much that he may have stumbled into the path of a train. We will never know what caused his death. The fact that the young man’s family were questioning the link between his death to the drugs he was being legally prescribed at the clinic so soon after he died makes me think that these are the questions that maybe NAMI isn’t asking, but others are beginning to entertain.

Without further ado, here’s the Healy post.
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The Hidden Gorilla

July 31, 2012 3 Comments

Three weeks ago What would Batman do Now covered the issue of suicide in the military – an issue that had Batman missing in action, and the Joker suffering the adverse effects of psychotropic drugs. Then along came James Holmes to the premiere of Dark Knight Rises in Aurora.
Most drugs that can cause suicide, including the antidepressants, mood-stabilizers, antipsychotics, smoking cessation drugs and others, can also cause violence. The akathisia, psychotic decompensation, or emotional disinhibition these drugs trigger that lead some to suicide, lead others to violence (see Healy et al 2006).

A medical blind-spot

There is some awareness that these drugs can cause suicide but considerable resistance to the idea. There is less awareness and even greater resistance to the idea that they can cause violence. Treatment induced violence lies in a medical blind spot – no doctor wants to contemplate the possibility that she may have had a role in the deaths of innocent third parties.
This may be the grim prospect facing Dr. Lynne Fenton. Dr Fenton we are now told had been seeing James Holmes, the killer at Dark Knight Rises in Aurora, and had seen him just a week before the killings. Given the current reliance of American medicine on medications it seems likely that medications are involved in the Aurora case.
For many the instinctive reaction to Holmes will be that he is either mentally ill, evil or a street drug addict. This makes sense. Violence is one of the associations we all make to the ideas of evil, mental illness and illicit drug use. In contrast most of us know people on antidepressants none of whom are violent. This makes it difficult to accept a link to prescription drugs. For many even raising the idea that Holmes may have been crazed by a prescription medicine is likely to sound deranged or the excuse of a bleeding heart liberal.

No other risk so hidden

But in fact there is a great deal of publicly available clinical trial (Hammad 2004, p40-41) and other data highlighting the risks of violence from psychotropic drugs. There is far more hidden data. There is in fact no other area of medicine in which there is so much hidden data on a risk that has consequences for the lives of so many innocent third parties.
With each “outing” of suppressed data lately companies have been beating their breasts about the lack of transparency “in the past” and have committed themselves to greater transparency. Here’s a chance for our major companies to prove things have changed by making the data on hostility, aggression and violence on their drugs publicly available. These data might tell us something about who is at risk, and allow us to better manage these risks. If there were a conspiracy to keep the details of all plane crashes out of the public domain, would airlines or the authorities have any incentive to make travel safer?
Instead, we are likely to see a vigorous marketing of articles that deny the possibility of a link. It takes really great science to overcome our biases. But if an article fits in with our biases (our associations), almost anything can be published, and doctors can be depended on to treat it as respectable science.
While 9 + of us out of 10 find the idea that an antidepressant might have caused Holmes to behave the way he did unbelievable, those whose lives have been touched by these issues are in a completely different position. News of another mass shooting immediately raises the suspicion that an antidepressant or related drug will be involved. And as, Rosie Meysenburg has shown on SSRI Stories, the drugs are all too often involved.

Slogan for the NRA – no drugs, no killing?

The drugs have been involved so often in campus or mall shootings that for some the surprise is that the medication question is so slow to get asked, as Peter Hitchens who is not a bleeding heart liberal has pointed out. What political considerations keep the NRA out of the debate? When Batman tells America “no guns, no killing”, there must be a temptation to respond “no drugs, no killing”.
But if Holmes turns out to have been on a drug that can cause violence, it is a quite separate matter to establish that in his case the drug he was on did contribute to what happened. It may not have. Without details of the case it is difficult to offer a view.
But this will not stop the debate in the public domain about an easier question for drug companies to control – do psychotropic drugs cause violence. And here, even though in some jurisdictions companies are legally obliged to say their drug can cause violence, a recent article in Psychopharmacology by Paul Bouvy and Marieke Liem denying the possibility of a link is certain to be marketed heavily.

Storkology 

Bouvy and Liem’s article has much in common with recent articles by Robert Gibbons in Archives of General Psychiatry (see Coincidence a fine thing & May Fool’s Day). These articles may have no links to or input from industry, but they fall on the fertile ground of a distribution system complete with public relations companies geared up to make sure that messages like this get picked up and equally that messages about problems that treatment may cause do not get heard.
When it comes to Adverse Drug Reactions (ADRs) on prescription drugs, there is no such thing as an academic debate with equal airtime for both sides, although Psychopharmacology have published a response to Bouvy and Liem’s article unlike Archives of General Psychiatry which has refused to publish responses critical of Gibbons’ articles.
Bouvy and Liem correlated data on lethal violence in Holland between 1994 and 2008 against sales of antidepressants. The drug sales went steadily up and the number of episodes of lethal violence fell, leading the authors to claim that “these data led no support for a role of antidepressant use in lethal violence”.
This is a marvelous example of what is called an ecological fallacy. An ecological fallacy is when someone claims that if an increase in the number of storks parallels an increase in the number of births that storks must be responsible for births.

Doubt is our Product

The best known example of storkology in recent years were the graphs produced by tobacco companies showing rising life expectancies and even reduced deaths from respiratory illnesses in line with rising cigarette consumption. These were produced as part of a Doubt is our Product strategy to deny the risks of smoking.
Recent sightings of storks include claims that increased SSRI use is linked to falling national suicide rates. The articles making these claims offer data from the late 1980s but disingenuously omit some key facts. One is the fact that suicide rates in most Western countries were falling before the SSRIs were launched. Another is the fact that both suicide rates and antidepressant use rose during the 1960s and 1970s when antidepressants were being given to the most severely ill people at the greatest risk of suicide. This was when suicide rates should have fallen if antidepressants have any effects on national suicide rates (Reseland et al 2008).
Autopsy (post mortem) rates are also left out. The more autopsies done the more suicides and homicides are detected. Autopsy rates rose in the 1960s and 1970s and fell from 1980 before antidepressant consumption began to escalate dramatically. The rise and fall in autopsy rates perfectly mirrors the rise and fall in suicide rates.

Why would Psychopharmacology take an article like this?

For the purposes of this argument, let’s assume the data on episodes of violence in Holland that Bouvy and Liem use is correct. This may not be the case – British national suicide rates are no longer dependable. The national figure is in essence set by a bureaucrat in London, who has scope to make the rate rise or fall as needed. Let us also assume declining autopsy rates play no part.
Before considering what else could be involved, let’s look at the shape of the argument and ask why Psychopharmacology would take an article like this. First alcohol use has increased in Holland during this period but no-one is making the argument that increased alcohol use has led to a decline in acts of lethal violence or the further Bouvy and Liem argument that this means alcohol cannot cause violence. Why not? Because, we associatealcohol with violence.
SSRIs cause growth retardation in growing children. The clinical trial data show this retardation and the labels for the drugs mention it. During this period SSRI consumption among children has increased in Holland but the Dutch have become the tallest people in the world and are getting taller. Where is the article saying that the increasing height of the Dutch proves that SSRIs don’t retard growth?
In the case of violence, the published trials show antidepressants cause it, probably at a greater rate than alcohol, cannabis, cocaine or speed would be linked to violence if put through the same trial protocols that brought the antidepressants on the market. The labels for the drugs in a number of countries say the drugs cause violence. And there is at least one clear and well-known factor, just like autopsy rates, that can account for the findings – young men. Violence is linked to young men, and episodes of lethal violence are falling in all countries where the numbers of young men are declining.

For ADR read A Dr

Whatever Psychopharmacology were doing taking an article like Bouvy and Liem’s making claims that run counter to the warnings that are already on the drugs, without warning their readers that this was the case, from here on the game for industry is about managing associations. From conmen to hypnotists to Batman, the trick is to hold the audience’s focus so they miss something much more important in their peripheral vision field. This is what public relations companies excel at.

One of the best examples of how we can be tricked can be seen in the Hidden Gorilla video where selective attention can lead to us missing a Gorilla walking right across screen in front of us. But the very best trick must be the one that leaves us certain that serotonin reuptake inhibitors or amphetamines available on the street cause violence while in complete denial that almost identical  prescription-only drugs could do so.

In the case of prescription drugs, the key people are doctors, the Watsons. Always one step behind the smarter Holmes. While it would be nice to see Watson turn the tables for once, in this mystery Holmes has the last line once again. It’s elementary My Dear Watson. For an ADR you need A Dr.

A banner day but there’s work to be done

Today is my 500th blog post, and I was planning to mark this auspicious occasion by being statesmanlike and uplifting. However, real life intervenes and there is always some article or e-mail that cries out for my critical comments. Two have come my way, one from the New York Times and one from my perennial source of schizophrenia disinformation, namely NAMI.

The New York Times article on anorexia nervosa prompts me to bang on about the way schizophrenia is seen as a “special case” in our Western society, apparently way different than anoxeria nervosa, which appears to have family causes. The article refers to anorexia nervosa a “mental illness” and discusses it entirely in terms of community and family pressures. No mention of medication in this article.

As a teenager, Naomi Feigenbaum developed bizarre eating habits that had nothing to do with Jewish dietary laws………………….Young Orthodox women are also expected to conform to a rigorous code of conduct, with few outlets for rebellion. They are expected to be chaste until marriage and do not date until they start looking for a husband. Even gossip is considered a sin.

Your child and mine started having equally bizarre habits when they were teenagers or in their twenties, which I fully suspect is rebellion, but apparently schizophrenia is impervious to the kind of psychological understanding that this article promotes.

Then there’s NAMI, always quick to inject the need to medicate and oblivious to the fact that the medications your doctor gives you are prescription drugs and they are addictive. I couldn’t dream this stuff up if I tried. I’m so glad NAMI is there to reassure stupid, hysterical mothers.

The following is an account from a NAMI Helpline associate:

“I spoke with a person this morning who was crying because her 26-year-old child with mental illness had been in and out of hospitals and was refusing to take her medications, but also had a prescription drug addiction.

I let her talk for a while and when she calmed down, I told her about NAMI progams and support available in her local community. I also shared support options to help with addiction issues.

By the time we got off the phone, she stopped crying and thanked me, saying that she was so grateful that I listened and that she had learned so much about the various support options available to her.”

NamiDearest nails drug market creep

The bipolar dog’s heartbreaking dilemma

What I find so odious about the National Alliance on Mental Illness (NAMI) is its whole-hearted embrace of the pharmaceutical treatment of mental illness. It is so enamored of pharma that it is constantly on the look-out to help its good friend find new customers. The childhood bipolar market is saturated, but now there are PETS! And who’s to say that Fido isn’t bipolar? You know you’ve been ignoring his behavior for too long, thinking he’d grow out of it. But, there’s good news on the horizon.  Bipolar dogs face enormous challenges, including society’s stigmatization and the discrimination that results from these prejudices. Substance use counseling, housing, work and educational skill development are among other supports frequently required to maximize your pet’s prospects for a higher functional level.

NamiDearest inspired today’s post.

Even our furry and feathered family members can have a mental illness

Many of us think of our pet as just another member of our family, so why shouldn’t we treat them like we treat our own children? It makes sense that if mental illness runs in families, our pets could become mentally ill as well. Indeed, this is what veterinary psychiatry has discovered. Mental illness in pets is on the rise!

“Dr Carter, a leading animal psychiatrist, said animals were being put on anti-depressant medication in increasing numbers as vets and owners became more aware of the signs of mental illness. “We use a lot of drugs like Prozac and other anti-depressants and Valium,” Dr Carter said.”

“Not only dogs can develop mental disorders. Dr Carter said she had treated cats, horses and even birds. Birds being kept as pets quite often display signs of mental illness. The most common sign for birds with mental illness is plucking out their feathers. There are lots of reasons a bird might pull its feathers out, but anxiety can be a cause for it.”

Read on to learn more about signs of mental illness in the family pet. Please do not further stigmatize our beloved pets by laughing at the images you will see.

Need a good laugh?

2011 NAMI Convention: Need A Good Laugh? is the subject header in the newsletter I received today from NAMI. Imagine my thrill when I saw that the first newsletter item was Anosognosia. I thought to myself, prematurely, as I discovered, that NAMI has finally figured out what a crock its belief in anosognosia is. Well, as you can see, anosognosia to this organization, continues to be no laughing matter.

Dealing With Anosognosia

Anosognosia, or the inability to perceive that one is ill due to impairment to the brain’s ability to process certain data, will take center stage at the 2011 convention.

Dr. Xavier Amador, who spoke on anosognosia to a standing-room only crowd at last year’s convention, will return to address the subject again on Friday evening, July 8. Anosognosia has been identified as the single biggest reason why some people living with schizophrenia and bipolar disorder do not seek treatment or do not comply with prescribed treatment.


Dr. Amador, a clinical psychologist, professor at Columbia University and founder and director of the LEAP Institute, will address this thorny problem, explain how it differs from denial or simple stubbornness and help family members and others begin to learn how to deal with it.

NAMI, a collectivity of hand wringers which could stand a good injection of laughing gas during its conventions, takes up the serious matter of laughter as newsletter item 2. I’m bored already.

Need A Good Laugh?

Debbie Ellison, certified laugh yoga leader, will present a special session at the 2011 NAMI Annual Convention on the benefits of laughter for individuals who live with mental illness. In this fun, hands-on session, you’ll learn how laughter:


increases the “happy” chemicals in the brain and fosters a positive and hopeful attitude;


decreases depression, stress and negative thoughts and feelings;


improves many chronic medical problems; and


makes you feel good.


The session is part of the convention’s Wellness Center–information and activities designed to increase well-being.
 
Notice (above) that NAMI likes them certifiable.

A preventable death: Jesus of Nazareth

A fun new blog has caught my eye. NAMI Dearest: Helping NAMI parents overcome laziness.

Below is an excerpt from a recent post: Ancient Families of the Mentally Ill: Back when tragedies weren’t preventable with meds. . .

The untimely death of Jesus of Nazareth may have been prevented if his severe and persistent mental illness had been properly treated, but alas, there were no miraculous antipsychotic medications 2000 years ago, and they, unfortunately, were forced to crucify the young man.
 No, my friends, there was no NAMI Nazareth to assist the needy Joseph and Mary. Count your blessings.

We can see from Jesus’ family history that his mother, Mary, also suffered from untreated delusions and hallucinations. At the age of fourteen, young Mary believed she was visited by an Archangel named “Gabriel” whom she claimed appeared in order to inform her that she was pregnant with the Son of G-d. Mary suffered also from command hallucinations in which, she felt, the angel was ordering her to name her baby Jesus. It is common for schizophrenia to run in families. In fact, Mary’s mother Anna was also afflicted with hallucinatory visions of angels.

Mary’s much older guardian, Joseph the Carpenter, upon discovering her predicament, was not pleased. He was determined to leave Mary and dismiss her entirely. The stress of being unwed and pregnant in ancient times, may have triggered Mary’s genetic predisposition to mental illness, the very same illness that Jesus went on to develop during early adulthood. Joseph opted instead to assist in concealing Mary’s crime, and they were secretly married by the high priest.

Indeed, this was a troubled family, prone to instability and homeless wandering. Jesus himself was born under less than sanitary conditions, surrounded by animals and their droppings, which gives credence to the possibility that he may have been infected at birth with a schizo-virus found in the animal fecal matter. Upon the birth of Jesus, three social workers visited to assess the situation, and provided some limited assistance. Yet, even with the large taxes being assessed in Bethlehem, there was insufficient funding for helping these displaced and mentally ill homeless individuals, and Mary and baby Jesus fell through the cracks of a cold, uncaring system. No, My friends, there was no Mother’s Act. Without the support of Joseph, Mary and Jesus may have succumbed much sooner to the ravages of untreated schizophrenia.


READ MORE here.

NAMI 2011 Convention

Blockbuster Line Up Of Convention Symposia

NAMI is pleased to announce an exciting line up of symposia for our 2011 Convention.

Health Care Reform.

Part I will offer a Washington,D.C., focus on how the health care reform bill is likely to be handled by the new Congress.

Part II will offer “take aways,” or what to do with this information when you return home.

Veterans. How NAMI is working to help veterans, the National Guard and reservists in need of mental health and readjustment services post-deployment.

Employment. Why, after all the work to develop supported employment, are 80 percent of adults living with mental illness unemployed? What can local NAMI State Organizations and Affiliates do?

Disciplinary Confinement. Isolation and confinement exacerbate psychiatric symptoms. Efforts underway to respond–including legislation, litigation and voluntary initiatives–will be examined.

Disparities and Cultural Competence. These issues will be addressed in the context of health care reform, supports and treatment availability and strategies for input and action.

Faith, Spirituality and Mental Illness. Dr. Nancy Kehoe returns to further explore the impact of religious and spiritual beliefs on recovery.

Emerging Creativity in Diagnosis and Treatment. Cutting-edge ideas to push the boundaries of our understanding of mental illness and further the effectiveness of diagnosis and treatment.

Federal Special Education Laws. Understanding IDEA, knowing your child’s rights and getting effective services.

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.

All about Eve

My theme, that psychiatry threw the baby out with the bath water when it stopped implicating parents in their children’s mental health issues, continues.

From a Child & Adolescent Bipolar Foundation blog.

In 1977, a Northern California mother named Eve decided she’d had enough. Eve had raised a child diagnosed schizophrenic and had endured the prevailing thinking by the medical community and society at-large at the time; that her son’s condition was her fault. That something in how she raised him caused his psychotic break with reality during his teens. Trying to get appointments with the local mental health facility administrators was frustrating, and the results of meetings she could get just made her angry. So on October 22nd, Eve and another couple, Tony and Fran, met with seven other concerned families of mentally ill children and formed the California Association of Families of the Mentally Disabled (CAFMD). But, they were just parents. What could nine sets of parents really do?

She explained why she took this dramatic step to the World Congress on Psychiatry that same year. Eve said, “We failed to understand why parents of a child with Leukemia were treated with sympathy and understanding, while parents of a child with schizophrenia were treated with scorn and condemnation.”

I’m old enough to remember the bad old days of parent blaming, which I mainly get a whiff of through the comments of people my own age whose siblings had a diagnosed mental illness (usually schizophrenia.) They tell me that how badly hurt their parents were by the attitude of the psychiatrists that they were at fault. I have no doubts that this is true and awful to experience. Psychiatry could have done a better job of it though, by skillfully and diplomatically promoting family based therapies.

Instead, at the behest of parent organizations like the one started by Eve that eventually became NAMI, psychiatry became pharmaceuticalized. By not taking a stronger stance, based on educating parents about what makes families tick, psychiatry deprived parents of meaningful ways of helping their children. The point of organizations like NAMI, as demonstrated by this quote, was to force psychiatry to retract its thinking that the family environment was largely responsible for major mental health issues. It was a tragedy in the making, because can we really say that there is less mental illness now than there was then, and that more people are leading productive lives? Robert Whitaker’s book, Anatomy of an Epidemic, says “no.”

What seemed like a justifiable course of action that the CABF article above relates (stop making parents feel bad about their child’s mental illness), warped into what we have today, where psychiatrists routinely tell people that they have a brain disease, not a malfunctioning environment. Most psychiatrists will no longer even tolerate a parent pleading with them to help them in some other way beyond the drugs. If you don’t already believe this, please read the latest Daniel Carlat interview here. NAMI and CABF have received the bulk of their funding from pharma. The belief that it is just plain wrong to link family trauma to mental health outcomes is seen in the number of people who accept that they have a brain disease. This belief is expressed by the CABF blogger who clearly wants parents to continue to fight the good fight.

I pulled a couple of comments in response to the CABF blog post which illustrates how far the pendulum has swung the other way. The first comment makes me laugh, because, thanks in large part to CABF, pharma and psychiatry’s efforts, she wonders if her kid’s problem is a circuit burn-out issue (almost like the kid needs to go back to the repair shop.) Poster number 2, if I read this correctly, is taking two drugs and has a nine year old DS (diagnosed son?), who is on a cocktail of drugs.

Comment 1
My seventeen year old son is diagnosed with bi polar disorder. He can be very energetic and try exsessively hard to be “good”. on the other hand he can become very irritable, unmotivated and bullyish. Between the cycle of mania and depression he appears to “crash” he behaves as one that has been on heavy drugs and is experiencing withdrawl symptoms. He acts very sedated and calm. Is there something that is taking place in his brain that is similiar to a ciruit burn out that explains this behavior ?

Comment 2
Thank you for that blog- It gave me goosebumps. What an inspiration!

Heather (40) Cymbalta; Seroquel XR
DS (9) BP, ADD, IED (TBD?) 1800 mg Trileptal; 10 mg Abilify; therapeutic level of Keppra; Clonidine for sleep, trying Home School in the fall; DH (39); DD (7); DS (3); Dog

CABF and NAMI are professional organizations that lobby for the brain disease model of mental illness because they won’t accept the blindingly obvious, that parents do play a role in their children’s mental health problems. Organizations like these have made getting good help for my son more difficult than it need be, because psychiatrists block their ears and will not listen to you if you aren’t talking drugs and diseased brains with them. They have been bullied into this position by lobby groups.