Dear NAMI: My Apologies.
I’ve Been Unfair.

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It’s become common place to give the National Alliance for Mental Illness (NAMI) a really hard time for accepting such high levels of pharmaceutical funding.  While far too many people might still be surprised to learn the percentage of NAMI’s total donation income made up by big Pharma (about 75% last I knew, or – in cold hard cash terms – around 23 million dollars from 2006 to 2008 as reported in the 2009 New York Times article, ‘Drug Makers Are Advocacy Group’s Biggest Donors’), it’s no surprise to those of us regularly lurking around these parts.  Why?  Because several of us reference it with varying levels of snark just about every other day.

I was most recently reminded of this phenomenon through the comments section of my blog post, ‘I Love…Stigma?’  However, I’ve come to realize that NAMI is taking an NAMI DBSA MHA Imageinequitable amount of heat on this topic, and that I, in fact, have been complicit in maintaining that imbalance.  Am I saying that NAMI should not be criticized for accepting pharmaceutical funding?  Absolutely not.  Rather, I’m simply not sure why, in our zeal to lambast NAMI, we’ve often given organizations like Mental Health America (MHA) and the Depression and Bipolar Support Alliance (DBSA) a free pass.  Hell, even organizations like the American Foundation for Suicide Prevention (AFSP) deserve their own fair dose of our ire.

First, More About NAMI:

There are many critics who say paying too much attention to NAMI’s donation logs is misguided.  For example, Pete Early, author and self-proclaimed lifetime NAMI member, counters that while the level of pharmaceutical funding may be excessive, the funds are put to good and meaningful use.  This is similar (though not quite the same) to another argument I’ve heard more than once (and that I myself used to believe to some degree many years ago):  Isn’t there a certain degree of irony to using drug company funds in ways that might just lessen the need for their drugs?

Others are quick to point out the exceptions, like NAMI Vermont who appear to have changed their policy as of 2011 and no longer accept drug company donations.  Along those same lines, people cite other sporadic signs of change such as Robert Whitaker’s (highly controversial) invitation to speak at the 2013 National NAMI Convention in Texas or the appointment of Keris Jän Myrick as President of the NAMI national board in 2008.  (Keris is a very outspoken advocate and fellow Mad in America blogger who herself has been diagnosed and hospitalized, and was seen as largely responsible for Bob’s invite.)  And, of course, the most popular counter-argument is that pharma contributions simply do not have anything to do with the vast majority of individuals involved with NAMI who generally range from extremely well intended to simply desperate for connection and support.

Most of these points are quite valid.  Previously impossible conversations have begun to happen that could lend support to critical shifts in national perspectives.  As with all national organizations, each chapter and group has its own personality, and some are run with a much keener eye to ethics than others.  Most importantly, many have begun to see the error in demonizing every last friend and parent who got desperate and reached out to what was quite frankly often the only option available for support – an option that we simply can’t deny has helped some.  Ultimately, the demonization does us little favors, and I’ll be the first to admit that I like many people who are connected to each one of the organizations I’m also criticizing herein.

Truth: NAMI does harm, and it does harm in many different ways that cannot be ignored.  While some may say that blaming all the parts for the actions of the whole is an over-generalization, excusing the practices of the whole as simply a way to fund important parts is equally – if not more of – a dangerous over-simplification.

It seems dubious to claim that NAMI is not influenced by its big pharma ties.  NAMI is a regular old conveyor belt for the message, “Mental illness is just like diabetes,” which itself is a one way ticket to a potentially permanent drug regimen.  NAMI national also appears to have drunk the Treatment Advocacy Center (TAC) Kool-Aid, and offers a fact sheet on Anosognosia and its ‘cure,’ forced outpatient laws, easily accessible on their website.  In 2013, at the Massachusetts NAMI Convention, they had a fascinating little one-sided session on the charms of Electro Convulsive ‘Therapy’ (ECT) called “No More Cuckoo’s Nest: Exploring ECT,” and other chapters have posted newsletters with articles so enticingly titled as:

That last one is my personal favorite.

But, like I said, we’re getting stuck on NAMI and there’s way more to look at, here.

Mental Health America

Mental Health America was actually the subject of my very first Mad in America blog: ‘I am the Number 60.’  In the article, I critiqued their new screening tool, the ‘M3,’ which purports to evaluate you for depression, bipolar, anxiety and PTSD in a mere 3 minutes.  It was clear to me then that MHA was getting pharmaceutical funding if for no other reason than that M3 seemed just a tad bit too eager to rush me off to my doctor, no matter how I answered most of the questions.

Here’s some of the hard facts, though:  As much as NAMI may want to claim their status as top dog in the ‘mental health advocacy’ giants realm, MHA is also throwing their hat in the ring.  On their website, they state:

“Mental Health America, the leading advocacy org addressing the full spectrum of mental and substance use conditions and their effects nationwide, works to inform, advocate and enable access to quality behavioral health services for all Americans. “

It’s a somewhat poorly written, windy little sentence, but it ultimately gets its point across:  MHA is a big player in the world of ‘mental health.’  And are they any less guilty of spreading the medical-disease-psych-drugs-are-the-only-answer mantra?  Well, in some areas of their website they do pay lip service to the idea that there can be many causes of distress and disruption (only two examples of which they identify as biologically or genetically based).   However, when they’re at their most honest and straight forward, it’s clear where they stand with unequivocal declarations such as, “Clinical depression is a serious medical illness.”  While they’re public about their stance against Outpatient commitment, they’re equally ‘out’ about their advocacy to have children screened for ‘mental health issues’ as early on as possible.

And the question of the hour:  From where does their funding descend?  In their 2010 annual report, 8 of the top ten named contributors were pharmaceutical companies (including all five that gave over $100,000 and 3 of five who gave between $50,000 and $99,999).

Depression and Bipolar Support Alliance

The Depression and Bipolar Support Alliance (DBSA) seems equally as troubled as its friends above.  Among fellow giants, DBSA’s particular claim to fame is that it is, “created for and is led by individuals living with mood disorders.”  However, many don’t seem to know that DBSA is ‘guided’ by a ‘Scientific Advisory Board’ made up of 47 clinically-oriented professionals, 34 of whom are doctors and some of whom have come under investigation for conflict of interests relating to pharmaceutical ties.  This includes former Board member and psychiatrist, Joseph Biederman.

On their site, DBSA also promotes many pamphlets and facts sheets, including an ‘educational brochure’ on clinical trials.  And just like MHA and NAMI, they promote the idea of significant emotional distress as a medical illness, jumping right to the now well-debunked myth that depression involves “an imbalance of brain chemicals,” in their very first sentence on the topic.  Similar to MHA, they appear to stand against Outpatient Commitment laws, but are equally as supportive of early childhood ‘mental health’ screening.

And their funding?  Once again, of their 10 top funders named in their 2012 annual report (each giving unspecified amounts over $25,000), eight were pharmaceutical companies.

American Foundation for Suicide Prevention

The American Foundation for Suicide Prevention (AFSP) may seem like small potatoes next to NAMI, MHA and DBSA, but they’re worth an honorable mention.  After all, AFSP stakes the claim that at least 90% of individuals who die by suicide have a “mental disorder at the time of their deaths.”  (Posthumous diagnoses, anyone?)  The site goes on to claim, “One of the best ways to prevent suicide is by understanding and treating these disorders,” which once again sounds like an express ticket to the drug mill to me.  (Though, to their credit, the site does recognize – however briefly – that some prescriptions appear to increase suicidal urges.)

AFSP also boasts the honor of having a former president – David Shaffer – who was responsible for leading the development of the now somewhat infamous TeenScreen.  TeenScreen is a controversial tool that Marcia Angell (Harvard Professor and former editor-in-chief of the New England Journal of Medicine) was described as, “just a way to put more people on prescription drugs.

And the verdict on AFSP’s funding?  Well, their 2012 annual report doesn’t look quite as grim as the others, but there one and only donor over $100,000 is Forest Laboratories, and Eli Lilly, Pfizer, and at least five other drug companies (keep a sharp eye out for the ones that are less familiar and/or don’t put ‘pharmaceutical’ at the end of their name!) donated in amounts ranging from $10,000 to $99,000.

So What?  Doesn’t it Matter Most What They Do With That Funding?

Well, yes… and no.  In 2012, Dalhousie University Doctoral student Sharon Batt found this issue compelling enough that she composed her dissertation on a study of the policy implications of pharmaceutical company funding of ‘patients’ groups.’  Colleagues and college officials found her final report so compelling that she was awarded the “Dalhousie University Faculty of Graduate Studies Doctoral Thesis Award for the university’s most outstanding doctoral thesis in the humanities and social sciences.”  (She is currently preparing to write a book based on her research.)  Some of her most relevant findings included the following:

“Non-profit advocacy groups that are independent of industry . . . support a strong government role in drug regulation by demanding rigorous safety standards, improved post-marketing surveillance, enforcement of the ban on direct-to-consumer advertising (DTCA) and controls on the proportion of health care funds that are devoted to pharmaceuticals. These groups typically define pharmaceutical funding of advocacy groups as problematic. Industry-funded non-profits . . . contest the assumption that strict government regulations favour the public interest. Their demands tend to be consistent with those of industry: rapid drug approvals, legal DTCA and no limits on formulary drug spending.”

Meanwhile, in a 2004 article by Pharmaceutical Executive Josh Weinstein titled, “Public Relations:  Why Advocacy Beats DTC” he states:

“DTC promotions result in excesses in spending, awareness overkill, mistargeted messages, and an overall negative image for our industry . . . DTC promotion regulations obligate advertisers to frighten the public with laundry lists of side effects… As a veteran pharma marketer, I have witnessed that the most direct and efficient tool for driving long-term support for brands has been, and continues to be, a well-designed, advocacy-based public education program . . . working with advocacy groups is one of the most accomplished means of raising disease awareness and enhancing the industry’s image as deliverer of new and tangible value to patients. Often this advocacy work is unbranded, stimulating consumers to ask doctors about their symptoms. Then, companies can compete by promoting their brands to physicians.”

Could it be any more plain?  Industry professionals are themselves publishing articles publicly acknowledging that one of the most effective ‘tricks’ they have up their collective sleeve is partnership with advocacy groups such as NAMI, MHA, and DBSA.  Need a specific example?  Try this one on for size:

In 2002, the Wall Street Journal published an article by Paul Glader revealing that Mental Health America (in collaboration with the JED Foundation) agreed to send 3,000 college presidents a letter and 13-page study titled, “Safeguarding Your Students Against Suicide.” It was underwritten by Wyeth and Forest Labs, and apparently all geared toward offering widespread campus talks on depression (by the makers of Effexor!).

Other Points for Consideration

Not surprisingly, pharmaceutical companies frequently refer the press to the very advocacy organizations (NAMI, MHA, etc.) that they themselves fund.  (“Hey, don’t ask us!  Ask those national leaders on mental health right over there.  We’ll be right over here minding our own business. Pay NO attention to the man behind the curtain!” [Twiddles Thumbs])  What’s the harm in that?  Well, take the book ‘Prozac Backlash,’ as an example.  When Joseph Glenmullen (a doctor from Harvard Medical with no other real claim to fame) authored ‘Backlash’ in 2001, he exposed problems with under reporting of negative effects and withholding of viable and much less dangerous alternatives.  The response?   Very public and very poor reviews by representatives from both NAMI and MHA (as noted in this Salon article).  Of course, those representatives failed to mention the millions in pharma funding their respective organizations had received, so mostly all the public got out of it was that officials from well-respected national organizations said the book was bad and wrong.  Counter message squashed!

But everyone has a fair shot at getting their opinions published, right?  Freedom of the press?  Not so much.  This brings me back to the CT Mirror Op-Ed piece by Rich Shulman (Mental Illness: Another Point of View) that I mentioned in my last post and that focused on the one sided and overwhelmingly medicalized perception of emotional distress being offered at a Connecticut Forum event called, “An Honest Look at Mental Illness.”  On March 9th, Deron Drum of Advocacy Unlimited posted a statement in the comments section of Rich’s piece sharing how his organization’s voice had been outright silenced when they also tried to speak up about about the Forum event.

“We sought to have our view, similar to Rich’s perspective, heard. One media outlet said that the last time they let someone speak against the current bio-medical philosophy in mental health – they received “angry letters” for weeks – so they would not let us be heard.”

Deron had a similar experience with another media group who actually invited his opinion, but then shut it down once said media group heard what the opinion actually was and decided it was too askew of the mainstream message.  In the film ‘Beyond the Medical Model,’ Robert Whitaker himself talks openly about having no longer been allowed to write about ‘mental health’ in mainstream media in the period following the release of his book (the namesake of this very site), “Mad in America.”  The point here is this:  The allegiance between the pharmaceutical industry and these ‘advocacy’ agencies has the power to shape public opinion in profound ways, including leaving very little space for other voices to even be heard let alone taken seriously.

Meanwhile, let’s not miss just how entangled organizations like MHA, DBSA, NAMI and AFSP truly are with one another.  AFSP has shared at least one prominent board member with DBSA’s Scientific Advisory Board (Jan A. Fawcett, M.D, who has also reportedly had pharmaceutical ties at times).  And, all the organizations are known for quoting one another to support their own claims (for example, this DBSA article that cites NAMI-reported statistics).  Given that the public is much more likely to believe what they hear from multiple sources (even if it’s just the same misinformation passed around between ‘friends’), recycling data between one another is a highly convenient, ‘smoke-and-mirrors’ strategy that leaves everyone involved looking all the more reliable.
It’s also worth taking a closer look at the donation numbers between the four organizations and how they intersect with one another.  Strangely, the New York chapter of MHA donated somewhere between $25,000 and $49,000 to AFSP in 2012.  And, while Pfizer’s gifting to MHA was fairly low (only totaling $21,500 in 2013), at least one of the grants making up that amount was for the specific purpose of improving “access to medication.”  Meanwhile, by looking at the gifting disclosures publicized on each pharmaceutical’s websites, one can also spot other odd little crossovers.  For example, in 2009 Wyeth reportedly gave $40,000 to AFSP,  $269,000 to DBSA,  $388,500 to MHA and  $255,500 NAMI.  However, upon closer examination, it becomes clear that DBSA, NAMI and MHA (along with the American Psychiatric Foundation, League of United Latin American Citizens, National Medical Association and the National Urban League) were all a part of the so-called ‘Depression is Real’ Coalition, and each individually received funds from Wyeth for that exact same project totaling $176,000.  The reason for approaching the gifting in that way is unclear, but nonetheless intriguing.

Side note:  Conveniently, if you want to know what other pharmaceuticals might be up to but need a list of names to look up, just check out the MHA ‘How Can I Get Information About Medications’ page.  There, they list the contact information for all ‘major’ pharmaceuticals.  (Once you know the name of the company, you can generally just search on that combined with ‘gifting’ or ‘donations’ and come up with their grant disclosure report.)

And what about that whole ‘peer’ element?  As most are aware, there’s a trend sweeping the nation involving peer-to-peer supports that has included the development of ‘Certified Peer Specialist’ (CPS) trainings.  Well, guess what?  DBSA currently holds the national contract for CPS trainings for Veterans.  But never fear, MHA and NAMI have not been left out in the cold!  For example, they apparently co-sponsor the ‘Via Hope’ CPS training in Texas.  The people being trained for these ‘peer’ roles are the folks that are supposed to be guiding the system because they’ve experienced it first hand.  They’re supposed to be change agents!  Yet it would appear that they are just one more group from which at least a significant percentage are unknowingly under the influence of drug companies, however indirectly.

Clearly, the impact of pharmaceutical funding to advocacy organizations runs far deeper than just what those organizations superficially appear to be spending said dollars upon

Conclusion

So, what are all the implications of having giant ‘advocacy’ organizations that are continuing to actively promote the medical disease model as the way, that are supporting their pharmaceutical funders by denouncing contrarians who dare speak up, that often have the monopoly on the ear of the media, that are paving the pharmaceutical ‘path’ in much less ‘scary’ ways than those ‘DTC’ commercials with their pesky, long lists of unintended effects, that collaborate among themselves and repeat each other’s ‘facts’ to build credence, and then have also deemed themselves expert ‘trainers’ of the nation’s ‘peer’ supporters who we’re supposed to trust all the more because they’ve ‘been there’… all the while amidst a general public that often has no idea about their funding relationships?  Well, gosh, I’ll let you take it from here.

But for now, I can at least say this:

Dear NAMI, I’m sorry I acted as if you were ever all alone in this.  (Though, all told, you probably are still the worst of the bunch if for no other reason than your apparent stance on forced outpatient commitment laws.)  As we all know, it’s hard to feel as if there’s no one there for you who really ‘gets it.’  But, you’re clearly not alone, and so I apologize.  In the future, I promise to do a better job of balancing out my snide remarks among your various acronymized companions, as well.  I wouldn’t want anyone to feel left out.

 

 

 

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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53 COMMENTS

  1. Sera,
    Thanks for researching the connections between patient advocacy groups and their sponsors in the pharmaceutical corporations. I work with mostly low-income medicaid clients as an LPC and I am appalled, but no longer amazed, at the quantities of medications some of my clients take, apparently unaware of the potential side effects. The prescriber’s approach seems to be, “I will give you whatever I can think of that might alleviate your (fill in the blank).” Part of what I do therapeutically is to offer alternatives such as mindfulness, nutrition information, self-calming strategies and identifying and addressing the effects of trauma. Mad in America has been a great resource. When I find a well-thought-out article, I pass it on to other professionals.

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    • Thanks, jorwig. I’m not sure why I let myself be surprised anymore… Surely, I shouldn’t be. And yet, poking around the info on this topic was nonetheless maddening. Thank you for being out there and doing the work you’re doing.

      -Sera

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  2. Thanks for this Sera. My suicide prevention organisation CASPER has a policy of not only not accepting Pharmaceutical company funding but not accepting government funding. Few people would understand how hard this is – not being paid for months and having to sleep on other people’s floors to survive – but this article highlights how important it is and why we make the sacrifice. Funding influences philosophy and practice and can corrupt the best of intentions.

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  3. Fantastic post Sera and thank you for researching this thoroughly. To add a personal note, Recently the director of the mental health units at the hospital I work for strongly promoted all staff to attend a NAMI “walk” through downtown Portland to promote “awareness of the need to help those with mental illness.” I stated my case plainly that I would not be walking with other staff. The Director and my co-workers were astonished. Why not? Well…it took a few minutes and a lot of blank stares.

    These staff are well meaning people, as are almost everyone who works with NAMI. They believe strongly that they are doing a very important service. It’s important to discuss the facts with them without belittling them or insulting them. If I say, well you’ve essentially been co-opted by the pharmaceutical companies to promote their medical illness based model and hooking people on strong drugs to treat their emotional distress…they may get a tad…upset.

    We need article after article like yours in high profile media sites…exposing Big Pharma for co-opting and corrupting the very organizations that are meant to ave and protect the vulnerable.

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    • Thanks, Jonathan! I agree that the challenge is the middle paragraph you share… And understanding the amount of time that it might take for things to begin to sink in after people have been told something else all their lives (and continue to hear that message much more frequently than what you might be offering). Thanks for reading 🙂

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    • I am likewise concerned about NAMI’s close ties to pharma, and their refusal to break free from such a strictly medical model. As someone who was once [confession time] very involved in NAMI, I have been extremely disappointed in them. While I also believe that many involved in the organization are well-meaning, they simply aren’t informed.

      Something that has alarmed me as well is NAMI’s ties to what I call Big Hospital. When we first began the “fresh air rights” advocacy in MA, NAMI was originally firmly on board, but then abruptly became ‘neutral’ as regards the issue. But looking at the lineup of sponsors for the annual walk, I realized the probable reason. Most if not all major psych hospitals, or hospitals with psych units, have been major sponsors. Not just that, but the lobbyist organization that fought fresh air and MANY other rights efforts was a contributor. And atop it all, the 2012 “National Sponsor” of NAMI-Walks was none other than Universal Health Services (UHS), a huge conglomerate of hospitals that specializes in ‘behavioral health.’ UHS has a long and ugly history of rights abuses, neglect, abuse and grevious medical errors. Its MA affiliate, Arbour Health Systems, is infamous (more at http://failuretocare.com/).

      NAMI-MA and NAMI-National both have language in their bylaws stating that part of their mission is to be a watchdog for violations at inpatient facilities. How could this be, while taking money from them?

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  4. To see what NAMI is really about go to their NAMI Policy Research Institute website. They spend most of their effort on making sure the pharmaceutical industry is able to get as many Medicaid dollars as possible. I’ve yet to find a NAMI member who even knows the NAMI Policy Research Institute exists. NAMI exploits the unsuspecting people who show up at their meetings seeking help. NAMI gets them to push for unlimited access to the “medications”. Members don’t realize they are most often killing their relatives with the medication treatment.
    http://www.nami.org/template.cfm?section=policy_research_institute
    The Treatment Advocacy Center is actually a spinoff of NAMI
    Check out the Stanley Medical Research Institute also. They fund the Treatment Advocacy Center. They are the big money and Dr. Fuller Torrey is right in the middle of this org also. He has an article currently on their front page.
    http://www.stanleyresearch.org/dnn/LaboratoryofDevelopmentalNeurovirology/ToxoplasmosisSchizophreniaResearch/tabid/172/Default.aspx
    Great article Sera.

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    • Oooo, I wish I’d checked out their Policy Research Institute before I posted my article! 🙂 I’m by no means an expert on NAMI… I’ve just grown frustrated that others are getting such a pass on their practices… I look forward to taking a closer look at the info you’re sharing!

      -Sera

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      • Sera,
        You’ll be amazed at the content on the NAMI Policy Research Institute website. It’s shows their true “mission”. Actually NAMI was at the table when the prescribing algorithm was first launched originally in Texas and which has caused so much more prescribing and harm. They also were aligned with Teen Screen which dissolved thankfully. Teen Screen wanted to screen “all” students across the nation. NAMI has never met an atypical anti-psychotic they didn’t like.

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  5. Excellent exposure of NAMI/TAC’s and other organization’s deceitful manipulation of the public and “mental health” officials. Every state “mental health” system I worked for had NAMI as a partner. I complained to administrators, on a number of occasions, and was basically told to keep my mouth shut as the partnership was sanctioned by the State mental health executives. Your article needs to be seen by all State and local “mental health” officials.

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      • I called up NAMI and asked all kinds of stuff like “has the FDA has approved the use Antipsychotic medications and mood stabilizers in treating oppositional defiant disorder and conduct disorder?” along with of course the first question; Antipsychotic medications and mood stabilizers have been proven to be effective in treating oppositional defiant disorder and conduct disorder BY WHO ????

        They couldn’t or wouldn’t tell me. Someone else should try, I don’t think they liked my ‘oppositional’ tone when I was asking the questions.

        800 950-NAMI

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    • It is kind of amazing how they feel OK to make all of these claims without any literature references or footnotes whatsoever. I wish we’d have “scientific literacy” courses for teens and young adults so that people could learn to sift through this crap. I don’t know what the answer is, but this kind of posting is totally reprehensible and possibly qualifies as downright evil!

      — Steve

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  6. Hi Sera,

    You mention a doctoral study by Sharon Batt.

    Sharon is another medical journalist who wrote a book called Patient No More about the breast cancer industry. I found it a couple of years ago, wanting more info when someone dear to me got diagnosed with breast cancer. I couldn’t believe it: page after page til the end read exactly like Anatomy of an Epidemic! I immediately introduced her and Bob to each others’ work via email.

    Recently, I just picked up In Defense of Food: An Eater’s Manifesto, by Mihael Pollan. Deja vu, all over again, this time about the food industry, research, marketing and influence on doctors.

    I’m picturing joint conferences. What a way to reach cross-over crowds.

    Thanks for your writing, Sera. It’s powerful.

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    • Thanks, grrrace! I’ll have to check out the books you mention… especially the food one. It’s very true that we talk about psychiatric drugs here, but some of the principles we speak of apply much, much more broadly. I appreciate your being a part of pointing that out. -Sera

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      • Yes, the “war on cancer” is so similar, with the treatments often killing people or making them sicker. The Gershon Miracle is a must-watch on that. I wrote a piece long ago about the similarities between obstetrics and psychiatry in terms of lack of birth options, informed consent, etc. Don’t get me started. It’s all interconnected!

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  7. Antipsychotic medications and mood stabilizers have been proven to be effective in treating oppositional defiant disorder and conduct disorder.

    Stated here http://www.nami.org/Content/NavigationMenu/Mental_Illnesses/ADHD/ADHD_and_Coexisting_Conditions.htm

    I called and asked “Antipsychotic medications and mood stabilizers have been proven to be effective in treating oppositional defiant disorder and conduct disorder BY WHO ???? .

    Try , see what they say , 1 800 950-NAMI

    I would think using pharma money to promote off label use of Antipsychotic medications and mood stabilizers in kids would be illegal or something.

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  8. Hi Sera,
    Thank you for writing this very important piece. We do need to keep trying to get this information out as widely as possible. Some published research articles that I have cited in the past by a very credible sociologist researcher, Athena McLean. In her work we see the history and context. And in the words of Miles Horton of the Highlander Center: We have to be in this for the Long Haul.

    http://www.psychosocial.com/IJPR_8/Recovering-McLean.html
    http://www.psychosocial.com/IJPR_8/Recovering1-McLean.html

    Keep up the great work.
    Ron

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    • Thanks for posting this! I sat and applauded the guy as he went after that NAMI person who was also a state representative who was supporting a bill that would draw more people into the net of psychiatry and the drug companies. Talk about a conflict of interests! The guy really did a number one her!

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  9. So how do we fund our way out of this mess? I have one strategy (not really mine as Seth Farber advocated this before me): What if religious institutions that are diminishing repurposed their buildings, properties, and staff for the purpose of Soteria-like housing and intentional communities for the mad in America? I have a collaboration with a diminishing Christian denomination on the East coast of the USA. They own buildings, properties, camps, educational institutions, and nursing homes that are going unused or underused. They have developed a community development corporation for the vision of repurposing these buildings. Some now house foster children who have aged out of the system, victims of domestic violence, and homeless people, in short mad folk. Just today, a notice came across my desk from a diminishing church looking for someone to lead them forward. There are no people under age 35 in this church. They would love to have some. Could we form an organization that could contact and collaborate with these property owners? Seems like a better bet than contacting Big Pharma, but I could be wrong.

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    • Great thinking outside the box, RISN.

      I just get very concerned about sending vulnerable people to church programs, given that for so many, the Christian church is another controlling, corrupt, abusive system and has a history of doing the footwork of imperialism and colonialism. Can anyone do a better job of translating that down to how that can impact on people’s everyday lives, especially vulnerable people?

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    • RISN, One way or the other, we do need more healing spaces, though I can’t profess to know how to make that happen exactly. The cultures that at least seem (at a distance) to be doing the best with all this are the ones that largely have families and cultures set up to just keep people at home in their darkest times, but I don’t know that we can rewind time exactly to make that true for us again… I haven’t fully thought out all the implications of what you’re suggesting, though I think grrrace’s concerns below are also valid. Space also doesn’t necessarily prepare communities for making those spaces healing, either, and so there’s certainly more to it… But it sounds worth thinking through further and I wonder what others think, too?

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  10. Why not form our own “Church” ” Temple” or “Religious Organization” designed specifically for open dialog ,RD Laing,Mosher organic food mercury free, natural first do no harm alternatives to shelter and heal and teach people how to avoid the medicalpsychpharma archipelago wherever and however and whatever it morphs itself into ? With enough guidelines to slide in under freedom of religious rights and enough room and non coerciveness for all who need ? With liberty and justice for all.

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  11. NAMI presents a serious threat to our National Security which has largely been ignored by our government officials, elected representatives and military leaders, with the possible exception of Senator Charles Grassley (R) of Iowa.

    NAMI is provided with meeting room facilities at Department of Veterans Affairs Medical Centers, where the group “educates” veterans and their families in the biological nature of “mental illness”. DVA psychiatrists refer their veteran patients to these NAMI groups. The veteran service organizations like the Disabled American Veterans also provide NAMI with meeting facilities. Perhaps the most outrageous development has been the authorization by the US Military for NAMI members to visit active duty personnel, officers and senior NCOs on-base during duty hours, to recruit active service members to these NAMI groups.

    At one DAV NAMI group I attended several times before being banned, and this was at my own DAV chapter where I am a life member, most of the “support” consisted of how to apply for and successfully obtain a service-connected disability rating for PTSD or another “mental illness”. Of course this involves following the doctor’s orders and taking all medications exactly as prescribed. The rest of the support seemed to involve dealing with the side-effects of the medications and the negative effects on the veterans personal and professional lives.

    The threat that these NAMI promotional activities present to force readiness, morale and National Security are quite obvious.

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    • To some stating NAMI is a threat to national security would seem like an overstatement, not me.

      “Antidepressants Cause Suicide and Violence in Soldiers | Print | E-mail
      Here are the starting facts: Death by suicide is at record levels in the armed services. Simultaneously the use of antidepressant drugs is also at record levels, including brand names like Prozac, Zoloft, Paxil, Celexa and Lexapro.

      According to the army, in 2007 17% of combat troops in Afghanistan were taking prescription antidepressants or sleeping pills. Inside sources have given me an even bleaker picture: During Vietnam, a mere 1% our troops were taking prescribed psychiatric drugs. By contrast, in the past year one-third of marines in combat zones were taking psychiatric drugs.

      Are the pills helping? The army confirms that since 2002 the number of suicide attempts has increased six-fold. And more than 128 soldiers killed themselves last year.

      One theory states that the increased prescription of drugs is a response to increased depression among the soldiers. In reality, the use of psychiatric drugs escalates when, and only when, drug companies and their minions target new markets. In this case, the armed services have been pushing drugs as a cheap alternative to taking genuine care of the young men and women in our military.”

      Read more; http://breggin.com/index.php?option=com_content&task=view&id=269

      “drug companies and their minions target new markets”

      The drug companies fund there NAMI minions , I hope our elected officials wake up and stop this.

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  12. Boy was I glad to see that your “apology” was facetious. Expose ’em all, go for it!

    I think I have only 2 things to add:

    On the point that many who work with NAMI et al. do so out of a sense of true compassion, etc., this is undoubtedly true. But many rank & file Republicans (and Democrats) also believe they are working for a noble cause and are oblivious to the evil machinations of their leadership; it is the collective functioning of an organization which determines its beneficial or malevolent nature, not the individual member.

    And regarding the thought that it doesn’t matter where the funding comes from as long as it’s used in a good way, I would have to ask what would happen if any of these groups changed course and denounced the use of psychotropic pharmaceuticals, or the medical model itself; would they continue to exist without the “support” of their benefactors?

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    • Hey oldhead,

      It’s an important point that the fact that so many genuine people who really care work with NAMI is part of what makes it an effective organization for the worse… It goes back to what the pharmaceutical rep said in that article I quoted above… This is what makes them so damn effective and convincing people what they need to believe/do! It’s a particularly difficult bind because attacking those people isn’t particularly fair or helpful, and yet they are a huge part of what sustains these places and make them ‘work.’

      Thanks for reading and commenting!

      -Sera

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      • What I’m seeing here is the concept of individual needs vs collective needs. Regardless of our stated intentions to discredit groups that are, indeed, doing harm to others via a variety of sinister cause and effect strategies, you are correct in noticing that there are naïve and well-intended individuals in any collective that are being used.

        I certainly fell into that category when I was working in one of these ‘anti-stigma’ campaigns myself. As I’ve said before, I eventually wised up. But it was a dilemma for me because the individual work I was doing in that particular group was beneficial for my own personal goals. The public speaking grew me a lot in my own self-awareness, which moved me along tremendously in my path. One reason I made Voices That Heal was to honor the effectiveness of telling our stories, which helped us all in our own healing. I wasn’t so concerned about the organization I was with, and at that time, I saw its value for all of us.

        So when I woke up to the fact that they were, in reality, not honorable to their own cause, and even worse, getting funding for these purposes, I took pause and did the best I could to figure out what was best for me to do. I had already sabotaged my work life years prior to this by speaking my truth to a voc rehab agency, so I had to consider taking another road, here, for the sake of my own survival. I did completely separate from that agency, eventually, but only after building my own bridge out of there, which I crossed successfully.

        This whole mental health world is fraught with very challenging double binds. It is easy to not see the forest for the trees, when we are not in touch with our true intentions. In the end, we all do what we feel is right for ourselves. Sometimes confronting feels good, and we feel our own confidence and power; while at other times, letting go and letting the universe do its thing, as we watch with faith and trust, puts us in touch with our humility. It’s a delicate balance, and an interesting one with which to experiment.

        In the end, I found that being flexible with how I addressed these issues led me to personal integration of all aspects of myself, and from this vantage point, I was able to succeed in all of my goals, both for myself, and in my intention to help clean up some of this mess.

        For example, I just found out that the highly stigmatizing and discriminatory voc rehab agency which I had taken to legal task 10 years ago and which I briefly talked about in my film (and btw, which partnered with NAMI and the likes, and worse yet, with the mental health system itself), closed its doors for good less than a year after I posted my film on YouTube, because it lost its funding. I imagine there may have been other factors, but I would like to believe that my truth won out.

        While I was happy to know this, I was also concerned about its clients, who were once my peers. They were good people, sincerely looking to heal and to grow professionally. I hope they are ok, and moving along in their paths even better now, because they are not being covertly dragged down by such clever hypocrisy. Still, I’m glad that this system is losing its footing.

        There are no easy answers to how to go about dismantling this mess for the purpose of creating and implementing more effective and stand up ways of addressing these challenging and complex issues, but I’m confident that all our voices and efforts, together, are making a huge difference. Different aspects of the tragic mental health world are being addressed, one way or another, and I believe it is proving to be quite effective.

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      • Some years ago I went into what was called the Nancy Deveroix Center in CoosBay , Oregon to try to volunteer my help.I didn’t even know it was NAMI but I sure found out. Heres an example how it looked sitting at the round table during a I hour session of counseling family members of the “mentally ill” one day. I had hopes I could contribute some useful ideas from my lived experience as a psych survivor and now med free.I was 60 years old. Their were 2 family members there seeking help one elderly woman concerned about housing options for an adult son and a weeping mother of 2 young children with diagnosis, at a loss for what to do and desperate for help as she had just left an abusive relationship and was alone overwhelmed and in poverty with 2 children but was receiving some government aid. Also at the table were the social worker in charge of the center that day a woman who had been married at one time to man with bipolar and knew” all about how difficult that was” she said. There sat at the table in addition 2 more elderly men that were also retired social workers volunteering their time. One of the retired social workers whenever I tried to speak of any alternatives made it his mission to speak to me as if I was a “mentally ill” non adult that should remain quiet. Not exactly open dialog. While the unstoppable tidal wave to appointments for more meds for woman and children swept over us all. Then all were comforted and hugged and we went our separate ways.
        Today this memory made me think of how the Black Panthers organized by bringing some services to the people, food kitchens and a sense of confidence and hope. They got funding somehow. Words alone are just not gona do it.

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        • I also think that each person has to fight their own battles, here, and to not rely on others. This is not activism like before, this is a new paradigm. We’re not just fighting for rights, respect, and personal dignity, we’re talking specifically about health issues, at the core of it all. This is a new twist.

          I fought my battles without any group support. In fact, I was abandoned by those who secretively believed in what I was doing, but they were too intimidated to show me support publically. I was scared, too, but facing my fears by speaking my truth was better than sinking into them by not standing up and speaking out, on my own. Had I done that, then I would have remained vulnerable to their control. But I found my own voice and learned to believe and trust in it, and this is what saved me.

          That is one double bind from which I ascended, not just by speaking my truth, but by embodying it as well. I walked my talk. Many tried to discredit me in various ways, but I stopped caring about those personal issues, because I was feeling more secure in who I was, and that is how I retrieved my mental health, which was the whole point to begin with.

          The stigma and discrimination occurred later into the journey, and caught me blindsided. These hard knocks are what propel us forward, if we can apply them as lessons and internal guidance, rather than to become despondent, enraged, and disabled by them. I went through all those stages, but I worked hard to ascend into a more hopeful and relaxed space about it all. That’s where my spiritual studies were most valuable to me, and where the mental health world completely failed me. The best they could do was to enable my victimhood, because they wanted to be my ‘saviors.’ Feh!

          I never got funding for anything, and I trudge on with faith and trust. I had no resources when I made my film, and yet doors opened for me all over the place. It was truly miraculous, in my eyes, and I feel that it was because I was meant to take this step.

          This nourishes me to the point where I can honestly say all of my needs are met, and when I’m looking for something, whatever I need comes my way, if it’s the right thing. Yet another way I avoided dependence on others and compromising my integrity in any way. This was also enormously healing to me, and it boosted my faith insurmountably.

          What we are facing in this arena has never before been addressed, and it is a multi-dimensional endeavor. I feel that the best I can do is to be an example by sharing my stories, but I’ve gotten flack for that, too, one way or another. This is a challenging road on many levels, no doubt about it.

          As I always say, we all do the best we can with what we know. At some point, it’s simply time to move on and hope for the best.

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  13. I don’t like NAMI… pardon the association but they are pushing this “come out as mentally ill” initiative oddly as the 5150 scenarios of forced treatment etc and loss of all rights are being promoted as good. I hear people say Britney Spears is going so great and she is so happy and successful now but I see that same way I felt when my mom did the same to me and I can see it in her demeanor. She makes the best of it but it’s not right.

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    • Thanks for reading and commenting, spemat. I’m sorry I missed your comment back when you first wrote it. I don’t know too much about Britney’s history or current status, but your point about pushing ‘coming out’ at the same time pushing forced treatment is a good one!

      -Sera

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  14. I was a member for NAMI and I resigned. NAMI only cares about rich people, or if you live in a city or a rich community. I called there headquarters Nationally, and here in Massachusetts. The operators who run this are rude and uncaring. One of these “volunteers” tried to sic a psychologist on me to throw me in the rubber room, and we were going to call the police if they do that. They gave me useless numbers. And the so-called. “National Suicide Hotline” referred me to a insane asylum! And the so-called “warm-lines?” Brrrrrr…. Massachusetts is bad enough with mental health. I went to 20 psychologists who either rolled their eyes, yelled at me, sit there and smile, one told me to leave after ten minutes, or worse telling me to think happy thoughts or the worst count your blessings! The whole situation with NAMI and the extremely poor mental health, (the way I was treated by NAMI and the so-called “mental health professionals” makes me sick! After going through all of this experience, I learnt two things, I can see why a lot of people want to commit suicide(even myself sometimes.) And, With NAMI YOU ARE ALONE!!!

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    • Glad you resigned. Everything you have said about NAMI resonates with what I’ve heard and experienced. There are some well-intended people in there, but they as a rule tend to freak out when anybody questions the dominant paradigm or starts talking about the rights of “mentally ill” people to make informed decisions. Not all branches are like that – there are a few exceptions, but the national leadership tends to be 100% behind the diagnose-and-drug strategy, and lets parents and society off the hook completely as possible agents of mental distress.

      And Sera is correct, this board doesn’t turn over fast enough to expect a 4-hour response, especially on an older thread. It’s more reasonable to expect something in a couple of days, unless it’s a very new and hot thread.

      Hope you’ve found someone more helpful than NAMI in your community!

      —– Steve

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    • Wow, a 4-hour turn around time seems like a high expectation for a blog from last March! I’m good, but not that good. 🙂 Honestly, I do try and follow up and keep track of comments, but it’s hard not to lose track of the older ones.

      Anyway, I’m sorry that you’ve had so many bad experiences with NAMI and beyond. At the very least, I can say that you’re not alone in that. Thank you for reading, though. I hope that you are able to find some connection points that are worthwhile in MA or beyond!

      -Sera

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