My favorite part is that NAMI supports "assisted" outpatient treatment (which forces a patient to either take the medication or be threatened with hospitalization) even as they're receiving $$$ from these drug companies. It makes me sick. That's a serious conflict of interest. I would like to introduce them to my relative with tardive, and then have them tell me she is living a better life as a result of psych meds.

As a person who was told I would have to take psych meds for the rest of my life (and have now been off of them completely since 2003)I only want 2 things:
1. Honesty about potential side effects from these meds.
2. Respect for the patient's choice to decline medication if the patient determines the risk is not worth taking.

Is that so much to ask?

from the link:

.."Partnerships are dandy. Corporations can be altruistic. And helping people cope with mental illness is definitely a worthy goal."

That says it ALL.

NAMI is a momma bird regurgitating big pharma into the mouths of the people they are allegedly protecting.

This post rocks.

NAMI is a total sham. Anyone worth their weight in salt knows that. I can't believe they still have any credence.

Just a reminder, Philip. MHA, which you received an award from, wouldn't have been able to afford your travel and hotel expenses were it not for the pharmaceuticals. According to MHA's 2005 annual report, BMS and Eli Lilly each give more than $1 million to MHA in the preceding financial year,and other pharmaceuticals kicked in a bundle as well. MHA's financial statements do not itemize where the money went.

The NAMI headline was a cheap shot. This was red meat to your antipsychiatry readers and shame on you. I'll be happy to speak a lot more frankly in a private email. Over to you ...

mha didn't spend dime one on me. i paid my own way to dc and my own hotel and food. but yes they get loads of money from pharma. they don't use it to tout individual products the way nami does. as for my headline, it was perfect for the occasion. nami has had these support groups for years, so why do they need to start a new special round of them? i'll have to attend to find out. i am not aware that i have many anti-psych readers. a few sure but whatever. but they aren't the only ones pissed at nami and the mental health system in this land. many many patients are and they are sick and tired of being told to shut up and take their meds and go sit in the corner. thanks to the internet they don't have to anymore.

so has nami ever paid for your dinner at the galas you've attended? have you ever received a speaking fee from them?

Declaration of interest:

In Oct, 2006, NAMI Farmington Valley CT gave me a $100 honorium to speak, plus covered my AMTRAK expenses. I also sell my book at speaking engagements.

In 2002, DBSA paid me to write articles for their website. That money almost certainly came out of pharma donations. That same year they flew me to Chicago and paid for my hotel and food to consult with them on their name change to DBSA. I donated my time, but the other costs were probably sourced in pharma. That same year, I gave the closing address to the DBSA national conference. They offered to provide travel and hotel expenses. I did the gig for free and never submitted my vouchers.

Right now DBSA has me featured in a podcast and will feature me in an online chat. I'm receiving nothing, but staff time and production and publicity costs probably have a pharma connection.

I pay my way to attend the mental health conferences I cover as a journalist. I help myself to the conference food and drug company pens and lollipops.

I get sent free books all the time.

For the last 16 months, HealthCentral has paid me to write blogs for them. Their revenue is sourced in large part in pharmaceutical ads, which appear on the same pages as my blogs.

Right now I'm learning a bunch of new markup languages to retool my website for Google ads.

This summer, I will have my expenses covered to attend a major psychiatric conference to receive a public service award.

I put in 60-70 hours a week providing a free public service. I have been doing this for nearly eight years. I am supported in approximately equal parts by donations from readers, from doing blogs for HealthCentral, and from an advance (and hopefully royalties) on my book. Expenses come out of my own pocket and I have no health coverage.

I'm sure I left something out, but you get the picture.

nah that's cool. and yes you do provide a valuable public service in my opinion and congrats on the award. the apa i presume?

.."The NAMI headline was a cheap shot. This was red meat to your antipsychiatry readers and shame on you."

Some days beef is better than chicken.

HI, Philip. I only found out about the award a couple of days ago, and I didn't have the presence of mind to ask if it were kosher for me to let everyone know before they made their own formal announcements. So let me get in touch with them on Monday and then I'll get back to you. It isn't the APA, but they do speak for the world's top bipolar experts. They honor three people every two years, so I was totally stunned by the news.

One more thing:
I flat broke from paying psychiatrists out the ass for fees, rediculous co-pays for meds, and WANT THE SYSTEM TO CHANGE.

Anyone who desires credibility will keep their hands free of pharma-money.

It IS a conflict of interest. Like it or not.

I am sorry, my own opinion here, but shit people...this is never going to change the system if pharma KNOWS authors, special speakers, etc will accept their funding. It's a personal choice, but this is one time when I say, you know what?
Eat your cake and you can't have me too!

Mr. McManamy, I'm not anti-psychiatry. I'm anti tardive dyskinesia, anti- diabetes, anti- not telling patients the risks of medications, and anti forcing patients to take medications that can cause permanent damage. My question to you is: how is it not a conflict of interest to have an organization that gets a lot of $$ from big pharm supporting laws that force patients to take the medications those same drug companies produce?

Mr. Dawdy, I appreciate this comment you made: "They aren't the only ones pissed at NAMI and the mental health system in this land...Many, many patients are sick and tired of being told to shut up and take their meds and go sit in the corner." I think what's so frustrating for me is that my voice doesn't count. Only patients that have something positive to say about psychiatry or psych meds are taken seriously. Any patient or former patient who questions some of the practices in psychiatry is immediately labeled as an antipsychiatry extremist or a scientologist (I'm methodist, not that it matters), or it's their mental illness acting up. It can't possibly be that maybe, just maybe our opinions have some validity, also.

I would never tell other people what to do with their lives or to stop taking medication. I understand that psych meds have been helpful to some people. But, they have been very destructive to me and to others. Our voices need to be heard, too. And thank you, Mr. Dawdy for making that possible.

"'Just take your meds and shut up.' Is that the impression you get from your doctors?"

This comes out of my stock 30-minute talk. Believe it or not, this line went down extremely well in presentations to three different local NAMI groups.

Two nights ago I told a local NAMI group that if I simply thought my meds would make me better that I would be living in a cardboard box.

Guess what? Members of NAMI know the system is broken, they're as frustrated as we are, they are looking for more than the standard psychiatric answers, and they are receptive to patient-driven recovery.

And they are also very decent people.

But to find that out, first you have to be willing to talk with them, and to hear their stories, and to be willing to walk a mile in their shoes.

Re drug money corrupting: A little while ago I broke a story about a drug that is a dud for one of the purposes that 4 major psychiatric treatment guidelines are recommending. It's a story of industry deception, big money, and the whole psychiatric profession getting sucked in. If you want to know more about it, I suggest you ask Mr Dawdy to provide you the details in his blog.

Lisa,
Your voice counts.

Interesting discussion.

Unlike some of you, who have the benefit of analyzing facts and figures top-down, I have navigated the grassroots/astroturfing organizations from the bottom up.

I credit my recovery to the DBSA support group meetings I attended in 1994-95, and I've come a long way since then. I gained visibility in DBSA, then learned about NAMI, MHA, CABF, FamilyAware etc. by taking some part in all of them. I have attended DBSA, NAMI, APA and also Alternatives conferences, mostly funded by Govt. (CMHS) scholarships. I have been reimbursed travel expenses for some of the work I have done, but I have invested a LOT of my own time and money in outreach, and have some amount of disillusionment with pharma-funded outreach organizations. On the other hand, they are the companies willingly (even eagerly) handing out money to the outreach organizations. It isn't until they're well-established that they can attract funding from other foundations, corporations, professionals etc.

I always talk about the major disconnect between the local DBSA/NAMI/MHA groups and the national organizations. I work with people at the local DBSA and NAMI organizations and many of them are not paid for what they do, and they do a lot. They are weary of the positions, politics and programs of the national organizations, but they also know that the programs they conduct, like NAMI's "In Our Own Voice", Family-to-Family education, Support Groups, make a huge difference in the local communities. I'm fortunate to have met and known many of them, which is one of the many reasons why I view my Bipolar Disorder as a gift in my life.

So it's the micro- vs. macro- clash. You want to help people more and more, you realize that you are "handicapped" without significant human and financial resources, and you end up with a (hopefully successful) corporate model. You keep most of your creative control, but your investors are watching you. You do your best to live up to your mission, while trying to get more and more funding, influence and visibility.

Anyone who has attended these conferences knows it's a Disneyworld trip for most patients. Except it's upbeat suit-and-tie characters taking them on a few rides and everything is hunky-dory till reality sets back in. The conferences are important for these organizations, it is a line-item in fund-raising.

Comes down to "Indecent Proposal". What are things you will not do and the price will never be right? Do you want more people to read your blog, vote for it as the Best Blog? Who will you say No to if they want to fund you to do exactly what you do today - scathing attacks on pharmas, outreach organizations, and anyone else who is part of a corrupt system? Would it be good if some pharma ads can help you earn a living and let you continue to write this blog (because this blog is important.....how?)

Sekhar

To Lisa

I fully understand where you're coming from. Our meds suck, doctors lie to us, the system is broken, and then everyone blames us for not getting well.

But I'm willing to wager that your beef has never been with NAMI. I've been attending support groups for seven years, and I've heard patients (I have bipolar I by the way) complain about their meds, their pdocs, their bosses, their families, and on and on. But not once have I heard someone say NAMI's trying to force me to take drugs.

Feel free to tell me I'm wrong, but I'm sure your main concern and my main concern is to get well and stay well, to get our lives back and to find meaning and value in our existence. It isn't always easy, and many days we're struggling.

Our illness has given us a lot to be angry about, but the key to healing is to let go of our anger and learn to take charge of our own recovery, which I am very sure you are doing.

There are a lot of good books about making choices in our own recovery. Sarah Russell, a researcher who lives in Melbourne, actually asked 100 high-functioning bipolars what they did to stay well. A good number of them were able to manage on either no meds or very low meds doses by implementing a whole array of coping skills. Monica Basco has a new book out, The Bipolar Workbook, that is extremely useful. The list goes on and on.

As for NAMI - they are not into sending meds police to your door, though a lot of people would have you believe that. The president of NAMI has bipolar, as the one before her. There are propagandists out there who set up NAMI as a bad guy to play on our fear and anger. Yes, some of the NAMI party line sounds scary to us if you don't know the context or the people involved, and the best way to overcome your fears about this is to talk to some NAMI people and listen to their stories. Then make up your own mind.

Also listen to the people out there with a vested interest in trashing NAMI. I have come to the conclusion these people don't speak for us. They are not interested in our recovery, they have no empathy for other people's suffering. They live to feed on their own anger. But don't take my word for it. Talk to some of these people, yourself, and form your own conclusion.

In the meantime, I hear you. Speak out. Your voice is valuable, extremely valuable. You're the enlightened one. Your job is to enlighten your psychiatrist and the rest of psychiatry. It's a lifetime task. Let's get started ...

there have been so many smart comments here. lisa, you are so right on the point with what you wrote. the odd thing is that i am pretty much a moderate in this game. my beef, in the post that started this all, is with nami national, as opposed to your local hard working nami local/state. but natl sets the tone, defines much of the rhetoric around mental illness and treatment that the media repeats, and also has the ear of influential policy makers. they call themselves the nation's voice on mental illness. i'd be much happier with them if they didn't operate as shills for various pharma companies and they have and they will. the things nami, mha and dbsa/ndmda do on a local level are fine and to be comended. however that doesn't excuse any of these groups' behavior on a national leadership level. mha national gets about 50 percent of its funding from pharma, but you don't see them going around openly touting certain company's products. you don't see fuller torrey speaking to their convention. dbsa is a group that in mind is in transition. we'll see where they wind up.

like john, i am beyond frustrated by the lies out there, and that's what i have been pressing on this site for the last 18 months--holding the mental health/industrial complex accountable on every level. someone has to. in addition, i've long held patients responsible too for what they are doing with their lives to 'get better.' i don't like the whole argument advanced by pharma and researchers that anyone with a mental illness is a disaster, all they need are a ton of meds, if the meds don't work then it's the patient's fault, so what patients really need is to accept their reduced status and be coddled. no one will ever recover if that mindset carries the day.

in some ways, it comes back to my basic point that researchers don't study what makes people well. i am talking long term not short term. anyone can be improved by any mood altering agent in the short term. i'd love to see a head-to-head showdown sometime between an anti-depressant or atypical and morphine or bourbon. over the standard four week trial, i have a hunch that there wouldn't be much of a statistical difference between booze, say, and paxil. i am only half joking. we have a small body of research showing that ketamine and mdma (ecstacy) have useful effects on depression, short term at any rate. pot seems to help with depression as well, although that info is mostly anecdotal because the government always finds a way to block research on pot.

and so on.

i feel like i have just written a post here and maybe i have.

This discussion is very enlightening, bringing back into the discussions in various other threads on this site about the Great Divide. There clearly remains a team vs. team theme here. It is my opinion that this division will promote the lack of change and forward movement the current mental health system needs so desperately in this country.

I also wanted to make a comment, that the discussion is about the structural framing of an organization, a public service-based entity, receiving funding to help promote their cause,and concern for those who suffer from mental illness. I seriously doubt that anyone here reading or posting questioned the integrity, decency or compassionate hearts of the members of NAMI.

In my personal experience as a consumer and mother of 2 mentally ill children who are grown adults; I saw a need for change in the very people that have been discussed here: caregivers that have walked many miles and lived many years,taking care of their children or loved ones, sometimes an entire lifetime.

I was honored to have met several women who discussed with me, how they have been 'doing this for 30 years', etc. What I took away from those conversations, was not hatred, or ill desire to beat down NAMI (for instance)--what I came away with was a burning desire to see this system change for the better, so that there would no longer be lonely, tired mothers, fathers or siblings in the future, telling people 'this is the way it's been for 30 yrs.'

My goal was to not be one of them. In that sense. I did not want to be sitting in mental health court 30 years from now, telling the next generation how hard it's been, and how nothing has changed in the system for the better.

The older generations, are the heroes. They are to be respected, and I for one do respect them, and in every way I can I want to keep my promise to those women in the mental health court that I met...."I will not forget what I have learned, I will use what I have learned, observed and witnessed, to improve the lives of the next generation of caregivers, patients, and families."

I personally appreciate the author of this blog taking personal time without payment of any sort; to report in proactive investigative reporting of important mental health issues, that cause people to think. To really think.

Three thoughts on NAMI: Last year while trying to get ahold of my gramma's lobotomy records all the writers, academics and institutions told me to call NAMI for help. These records are sealed, destroyed and hidden, and everyone told me the NAMI folk will be sure to stand up for you. I called them, left 2 messages and when they finally called back they left the message "We will not assist you in this matter. There is no need to return my call." Click.

NAMI and families, I'd like to see some studies on what they're doing here. I've heard many parents of S&P mentally ill tell the Texas legislature that NAMI was a godsend, but have yet to see their kids go before committee. One of my best friends just spent 4 months stuck in a psych ward because NAMI weasled its way into the family dynamic, and convinced my friend to give his dad power of attorney. I talked to my friend weekly in the psych ward who was rational and non-delusional but out of his family's hair.

And thirdly, my own experience as a patient seeking a Health and Human service program geared to helping the disabled with job training under the Department of Rehabilitative Services--I was told by the bureaucrat in charge that I would have to take Seroquel daily to get services, the label prescribes a daily dose, but my p-doc knows I only take it as needed, and is fine with that, but that wasn't ok with DARS, who wrote down "non-compliant" on the form. I was hella pissed, why are they intruding on my business this way? They recommended I call NAMI and learn about managing severe and persistent mental illness.

What a crock.

I have a story about a telephone call I made to NAMI-Seattle. I was explaining a difficult situation a family member was in at the time. I too, had been referred to call NAMI; that they would help me.

The NAMI person told me to "Call Philip Dawdy."

I have no doubt that many members of NAMI are dedicated well intentioned people who have either been troubled themselves or had loved ones troubled with mental issues. I have been to their events and seen the innocence and enthusiasm of the many volunteers. I am sure NAMI started as a genuine grassroots’ effort and that’s what makes how it has evolved especially insidious and tragic. There is simply no doubt that the agenda is now being driven by the interests of biological psychiatry and the pharmaceutical industry and the organization has left next to no room for any dissent from this model. Posters at NAMI events, which are often held in churches, proclaim mental illness as a “brain disease” caused by “chemical imbalances” and drugs are promoted as the panacea to “correct” this situation. The penetration of NAMI into faith organizations is actually quite frightening because it lends such an aura of respectability and good intentions to their efforts but really it is just an extension of industry and professional brainwashing that has been going on for well over a generation now about what causes mental illness. If anyone has any doubt about the influences on NAMI look at this quote from an article dating from 1999 – we can only imagine that funding now is even more generous.

“According to internal documents obtained by Mother Jones, 18 drug firms gave NAMI a total of $11.72 million between 1996 and mid-1999. These include Janssen ($2.08 million), Novartis ($1.87 million), Pfizer ($1.3 million), Abbott Laboratories ($1.24 million), Wyeth-Ayerst Pharmaceuticals ($658,000), and Bristol-Myers Squibb ($613,505).

NAMI's leading donor is Eli Lilly and Company, maker of Prozac, which gave $2.87 million during that period. In 1999 alone, Lilly will have delivered $1.1 million in quarterly installments, with the lion's share going to help fund NAMI's "Campaign to End Discrimination" against the mentally ill.

In the case of Lilly, at least, "funding" takes more than one form. Jerry Radke, a Lilly executive, is [was] "on loan" to NAMI, working out of the organization's headquarters. Flynn explains the cozy-seeming arrangement by saying, "[Lilly] pays his salary, but he does not report to them, and he is not involved in meetings we have with [them]." She characterizes Radke's role at NAMI as "strategic planning."

A couple of years ago NAMI organized demonstrations of “mentally ill” people protesting the removal of Zyprexa, a drug that’s been featured on this blog recently, from the state approved list of drugs covered for Medicaid treatment. We can imagine posters demanding this neurotoxic drug should continue to be used were being waved by debilitated patients. This manipulation of victims by the drug industry is IMHO the most insidious and evil aspect of pharmaceutical marketing that goes on today. I leave NAMI events shaking to see how mentally troubled people are being used without being informed of what these drugs are really doing to them.

Vera Sharav puts it well:

"Lilly donated at least $3 million to NAMI. For its part, NAMI promotes the increased use of psychotropic drugs, lobbies against any cost-saving restrictions on number of psychotropic drugs prescribed for one patient under Medicaid, and even lobbies for laws allowing mental patients to be forced to take antipsychotic drugs. The drugs most often prescribed for involuntary patients—Janssen’s Risperdal (risperidone) and Lilly’s Zyprexa (olanzapine)—cause debilitating, indeed, lethal effects. . NAMI’s failure to inform its constituents about the danger these drugs pose for patients, and its continued aggressive promotion of these drugs despite the evidence, may be viewed as confirmation that NAMI is an extension of Lilly’s marketing department."

Laurie Flynn for her part has left NAMI and become the head of Columbia University’s Teen Screen program and is rushing around the country trying to get every school district in the nation to approve a 15 minute screening test used to refer teens to “treatment for mental illness”. The test has at least a 70% false positive and 50 % of teens who fail end up seeing doctors for treatment that almost invariably means a prescription for medication. We can see she learned her lessons well at NAMI about which side her bread is buttered on.

I have no specific experience with NAMI, per se, but I have learned to question support groups in general, inasmuch as they have a tenancy to tip over into becoming religions with unquestionable doctrines. One memory that serves me well was of an Alanon group I attended a few times. When a woman stood up to give testimony about her gratitude for her husband's alcoholism because she'd found "such wonderful, supportive people," I got on my bike and rode away. I was there to learn to help an alcoholic, not to enable their addiction or develop one of my own. That particular support group would have led me to do both.

I'm on the AS spectrum, of course, so I don't really thrive on group dynamics, to say the least. If the point to a support group seems to be to get together and wallow, I loose all interest.

I have a number of other conditions - I'm a multiple personality and have chronic depression that seems to be related to PTSD - so I've been around the track several times, trying to get meds, trying to get OFF meds, etc.

 
I've found that my best strategy has been to stay out of the clutches of mental health professionals for the most part. I depend on my GP, and I've used a trauma therapist. I've been hospitalized twice - and I'd have to say honestly that the money would have been better spent sending me on a cruise. I find the saying "it's the trauma, stupid" to be an excellent ethos. When that rule has been followed, I've had remarkable results.

Over the years I've also found that it's more productive to learn how to work with the wetware I have, rather than to try and drug it into conformity with the expectations of others. This leads me to go about life a bit differently than others do, but it works far better than any formally derived prognosis would suggest it should.

I think the most important thing I've learned is that all of my "features" are indeed advantages, at least when I'm managing them well - and Lord knows, I've seen Neurotypicals fail to effectively manage their wetware pretty commonly.

Take George Bush.

Please.

Clinical depression is a mental state that, when managed, permits and even insists on dispassionate examination of reality. That's an unusual ability - and once one has learned that state, you don't actually need to be depressed to utilize it.

Multiple Personalities means multiple perspectives on the same fact set. That's an unusual ability.

Asperger's Autism means that I'm disadvantaged in communicating emotionally in any intuitive sense - and therefore I've had to learn how to communicate to people who can, which gives me a far better picture of the art of emotional manipulation than most others.

Even though I truly suck at it, I understand it better than those who use emotional persuasion with great intuitive skill. So while there are a great many people who can do the range of "normal" things I do far better than I, there are very very few people who can do the things I do best.

Any limitation tends to build compensatory strengths, and I choose to focus on my strengths rather than my weaknesses. In order to do that, I surround myself with those who have compensatory strengths. While I cannot speak directly to the issues of specific mental conditions other than mine, it seems obvious to me that the more usual "medical model" approach does not work well for most people, if for no other reason than the obvious - the idea that a difference is a disease condition that must be treated with medication or therapy until that difference is concealed from view.

This doesn't seem to me to be in the interests of the individuals concerned, if for no other reason than the most visceral - it robs the individual of their basic dignity; the level of self-esteem that allows one to work with one's issues and distinctions in a positive way.

"i've long held patients responsible too for what they are doing with their lives to 'get better.'"

Preach it, brotha!

"in some ways, it comes back to my basic point that researchers don't study what makes people well. i am talking long term not short term. anyone can be improved by any mood altering agent in the short term. i'd love to see a head-to-head showdown sometime between an anti-depressant or atypical and morphine or bourbon. over the standard four week trial, i have a hunch that there wouldn't be much of a statistical difference between booze, say, and paxil. i am only half joking. we have a small body of research showing that ketamine and mdma (ecstacy) have useful effects on depression, short term at any rate. pot seems to help with depression as well, although that info is mostly anecdotal because the government always finds a way to block research on pot."

You raise an issue that concerns me as well. I'm totally late on the bus with this post, but it drives me nuts that most clinical studies last 6-8 weeks. Maybe 10 if I'm lucky. An 18-month trial, IMO, is out of the ordinary. A year-and-a-half doesn't prove efficacy over the long-term, but it sure beats a damn six-week clinical trial. Problem is, most patients don't know about the short clinical trials, how their meds performed SLIGHTLY better than a placebo, or the "played-down" side effects. And the sad thing is, most patients don't even realize that a six-week trial isn't that great.

It's late and I'm venturing into a post that you've already covered quite well. But you're right: many meds haven't been proven to have a more significant effect than a placebo. It's just that doctors (consultants in conjunction with pharma) can skew the data to their liking, making a med perform better than it really has: http://clinpsyc.blogspot.com/2007/01/keller-bad-science-and-seroxatpaxil.html

My son is dead from Zyprexa. In 2002 there was no warning on the label; no warning from the doctor. He fell into a coma and died of profound hyperglycemia at the age of39. He was a wonderful person and about to start a new job using his Master's in City Planning from Cornell.

I will never stop fighting back until I hopefully achieve my goal of a criminal trial and prison terms for Lilly executives who KNEW that the drug was lethal.

Just a note to let you know that I just found your blog and I totally love it! Keep doing what you're doing. This is great!

Dear Ellen,

Thank you for sharing here. The loss of your dear son leaves me without words.

I want your goal to be achieved as much as you do.

Please take care.

Sincerely,

Stephany

Ellen, my heart goes out to you. I hope you get justice for your son.