"From my perspective, I have seen no influences of any kind by drug companies at the grassroots level."

NAMI and Pharma Co. don't care what specific drug-med is sold, they just want the message of MEDS FOR LIFE to be sold-brainwashed. Outside parental type of control of the "ill" person through drugs-meds (for money), instead of a free (willed) adult individual.

Instead of discovering whats wrong, confrontation, and then teaching-learning to live-cope with problems .

Why learning to live with mental illness? To live a normal life span that is not (25) twenty five years SHORTER.

Check out these two NAMI Photos:

http://www.namipharma.org/en-photo-1.html

http://www.namipharma.org/en-photo-2.html

When I started medication for Bipolar Disorder 2, all the information I could find pointed me towards a mix of atypical antipsychotic, antidepressant and mood stabilizer. Information from NAMI found on-line played a significant role in starting and continuing those medications.

Just as the NAMI volunteer says, I could not have told you what pharma company was underwriting NAMI but the reality is that probably all the psych med pharma companies are. I would like to have known that and I would have looked harder for unbiased information.

If they aren't already doing it, NAMI should be clearly stating their funding sources on all information they put out.

I have been off all the psych meds for 3 years and though I still have symptoms, I believe I am much better off without the drugs. I continue to work full time and know that had I continued on the meds, I'd be disabled from work.

I believe the meds may help some people but they also make symptoms worse for some. The Pdocs and patients can't sort out what is caused by the med and what is part of the disorder being treated. The result is usually adding more and more meds.

The pharma companies have shown us they are perfectly willing to falsify data to get drugs approved. I believe profits are everything to them and the welfare of patients is not their priority.

From the course description:

#Current information about schizophrenia, major depression, bipolar disorder (manic depression), panic disorder, obsessive-compulsive disorder, borderline personality disorder, and co-occurring brain disorders and addictive disorders

# Up-to-date information about medications, side effects, and strategies for medication adherence

# Current research related to the biology of brain disorders and the evidence-based, most effective treatments to promote recovery

-----

Sounds like it's based on the the mainstream "chemical imbalance" paradigm of mental illness that's promoted by drug companies. Helpful for some and hurtful to others.

Also what's this idea of "addictive disorders". I've come across this terms "addictive disorders" a few times recently and based on some things I've read it seems like psychiatrists will now start trying to prescribe drugs to treat addiction and alcoholism. A friend of mine went to a doctor who said he practiced "addiction psychiatry" and despite the fact that my friend is an addict with a long history of abusing all kinds of substances he prescribed a large dose of clonopin to be taken daily. He's now in rehab detoxing from the clonopin. Nice.

A selection of NAMI censorship and abuse articles are available at
http://www.ect.org. The page link is included in this post and you can get it here:
http://www.ect.org/nami-and-censorship/

The first three topics listed for the course are 1. "current information about schizophrenia, bipolar disorder. . . and other brain disorders", 2. "Up-to-date information about medications. . . and strategies for medication adherence and 3. current research related to the biology of brain disorders. The influence that we are criticizing is more insidious than what this well-meaning and I'm sure honest fellow is talking about. Pharma is extending its influence by promoting not so much specific meds, although I imagine they try to do that too if they have a chance, but rather by pushing the medical model for mental illness and supporting the rush to medicate. These family to family courses as far as I can tell are largely about keeping patients compliant and keeping them well confined to their labels and diagnoses. They are not about healing. The issue of how treatment has actually influenced the course of the "illness" is never even given a tiny nod and it's a huge issue frankly in this day of heavy medication and polypharmacy. Let's teach some of these family members about iatrogenesis; it might just open their eyes. And let's promote a very extensive understanding of withdrawal so that if someone wants to change course regarding medications they can try to do so in a manner that is as safe as possible. I don't think NAMI is teaching very much about withdrawal at all and it's one of the biggest public health issues out there with regard to mental illness.

While I am glad to hear there isn't a straight-up sales pitch for the sponsor's drugs, I think this misses the point. I wouldn't expect straight-up sales pitches, that would be transparently unethical. But if the sponsorship leads to NAMI employees/volunteers being more likely to speak positively of drug treatment (to say nothing of particular drugs) than they otherwise would, that's an issue already. I'm not suggesting that NAMI volunteers are so ethically-challenged as to literally justify making suggestions because of a sponsor, but the sponsorship is providing resources - information, data, whatever - that is biased. It's the same problem as doctors being more likely to prescribe newer, more expensive drugs, because that's the data being raved to them about so it's what they hear about. It's a question of whether NAMI can be a unbiased patient-advocacy group while being supported by companies with a vested interest in selling meds to the patients NAMI has access to in non-clinical settings.

Camas, I really liked your post. I think you and I might have had some similar experiences. Feel free to email me if you want, I'd love to hear more about your process.

I think the idea of "compliance" is pretty sick. When I was in the middle of my episodes I remember protesting to a friend who was judging my behavior by insisting that, "I'm being totally compliant!! I'm taking these drugs as prescribed and meeting with the doctor every week" and the meds were making me miserable and more insane by the day. When I complained to another friend that the nasal congestion from Risperdal and restlessness made it hard for me to sleep he suggested using a Neti pot. I ended up finally having a nervous breakdown later that day from the Risperdal.

I sympathize with family and friends. It's hard to witness someone swirling around and around and around. But there is a grey area that the idea of "compliance" doesn't recognize.

The Dead Kennedy's song "Trust Your Mechanic" comes to mind often.

Re: funding for Family-to-Family: That would be Bristol Myers Squibb, as in Abilify, right?

Forgive me, Volunteer, but what if anything does this course tell families about akathisia? What does it advise them to do about a family member who insists their medication is making them miserable and agitated? Does it even allow for the possibility that the family member might be right? Or does it just repeat the catch phrases about "lack of insight" being THE reason for "medication noncompliance"?

My own experience with NAMI: While coming off psychiatric meds with my doctor's (cautious) approval, my counselor tried to help me identify a support group that could help me with this transition. She asked three people. Two were doctors, who had no leads, but who commented that it was an interesting question. The third was the executive director of NAMI who reacted with complete horror. NO ONE should EVER come off their meds, she advised my counselor sternly. I am by no means anti-medication in all circumstances. But looking back, I am SO grateful that we chose to ignore the NAMI staffer's Pharma-blinded advice.

For the sake of your own family, dear Volunteer, and for all the families you advise, I urge you to sample a few independent opinions. The recent Los Angeles Times articles posted on this website are an excellent place to start.

Just wondering how much it costs NAMI to pay for a celeb TV actor who plays a drug-addicted doctor to pitch for them... an old tactic in a new setting. No matter what NAMI shells out for the HOUSE campaign, though, it is the rank and file members and their ill relations who really pay. And as long as NAMI teaches that drugs and not real brain biology are what their members should know, they will continue to pay.

It is my understanding that SSRI Stories spoke to a state Mental Health Consumers group about NAMI and they were told that the main problem with NAMI, in their viewpoint, was that it was all about the family and had no programs or help for the paitent or the consumer. Mental Health Consumers thought that some of the money pouring in from Pharma to NAMI should go to support things like recreational facilities for the patients or clubs where the patients could meet others, learn to knit, crochet, play basketball, learn woodworking - anything to keep them occupied while on the road to recovery. NAMI does none of this.

Now, while I understand that the families need help, in fact plenty of help, they also need to be warned about the danger they could be in from the medications which are given to their family members. So many of these patients are on drug cocktails which vary from year to year or even from week to week and there is considerable danger during withdrawal or during a change of meds. This is particularly true now that atypical antipsychotics are on board and now that antidepressants are being pushed for PTSD and for so-called bipolars & schizophrenics.

These patients, who were never violent before being medicated, now pose a threat to their family members. NAMI should teach about withdrawal, about medication changes, etc.

Here is a story posted last Saturday from www.SSRIstories.com where a wife became endangered by her husband's violence because her husband was on a cocktail of drugs, including Celexa, an SSRI antidepressant, Seroquel, an atypical antipsychotic [which is half antidepressant] and Klonopin, a benzo. He was a soldier given this cocktail for the diagnosis of PTSD.

http://www.ssristories.com/show.php?item=3278

Paragraph 11 reads: "A VA psychiatrist prescribed Klonopin (an anti seizure/panic medication), Seroquel (an anti-psychotic medication) and Celexa (an anti-depressant). At least four local veterans have died in their sleep while taking Klonopin and Seroquel and other prescriptions for the treatment of PTSD."

Paragraph 16 reads: "Although Diane was relieved that her husband was receiving treatment, she suspected the drugs were causing him to be overly sedated. He began sleepwalking and developed other sleeping problems. During the day, he was irritable and tired. Doctors discontinued the Klonopin."

Paragraph 22 reads: "Vande Burgt's other appointments were with social workers and primary-care doctors. His wife repeatedly called to report his increasingly violent behavior while he took the medication. The sedation, sleeping problems and unexplained behaviors were also getting worse."

http://wvgazette.com/News/200904110220

April 11, 2009
Veteran with PTSD fights for effective care

Tom and Diane Vande Burgt formed their own support group for veterans with post traumatic stress disorder, a condition that plagues Tom.
By Julie Robinson
Staff writer

Click here to see how veterans families celebrate a 'small victory' in drug battle

http://www.wvgazette.com/200904110217

CHARLESTON, W.Va. -- Tom Vande Burgt's daughter was turning 6, and he was in Iraq. He would have to say "Happy Birthday" to Destiny by phone. It's a call that probably saved his life.

I agree with the other commentors here. I first became a nami member in 1992 give or take a year. So, I have been watching this group morph from an advocacy and self/family help group to a mix of advocacy, self/family help, and a front for pharmaceutical companies to push the brain disease concept/medication answer. I do not have family members who continue to suffer from the predominant disabling mental illnesses (schizophrenic disorders, bipolar), but if I did, and if I truly needed NAMI, I would be sorely upset nowadays by the taint of Big Pharma. I initially joined up with NAMI to learn the patient and family side - to learn the real experience of MI and learn what help-seeking is like, and to really learn the kind of help that people actually get. With no phony gloss, PR spin, or textbook definitions. That is what I have gotten from NAMI. But NAMI is fulfilling this consumer-based advocacy role less and less. NAMI is becoming a mouthpiece and marketing strategy for Big Pharma.

Is NAMI out there pushing for the promotion of CBT as FIRST-LINE treatment for depression? No. For anxiety disorders? No. The empirical evidence says, for these problems, use drugs as add-on if necessary.

Is NAMI pushing for research into the trade-off between side effects and clincal efficacy? NO. Lexapro is marketed as "well-tolerated," yet NO proper tolerance study has EVER been conducted. There is NO study looking at health status preferences between two efficacy/side effect choices (i.e., low dose, high dose of Lexapro, or Lexapro versus some other med), such as can be done with the EQ-5D.

Is NAMI pushing for decent research into why ALL of these suicides and murders seem to have one common ingredient? No, it is not Angela Lansbury or Miss Marple showing up that predicts that someone will die; it is prescription of SSRI that is there at the crime scene time after time.

Is NAMI pushing the fed govt to look into this? Is NAMI funding any doctoral student to conduct a dissertation on this? Is NAMI surveying their own membership?

THAT is where NIMH money is needed. This is where NAMI needs to be pushing - pushing against anyone and any institution that stands between their family members with MI and optimal treatment. We know that Big Pharma hides data, fakes data, cherry-picks data, etc. Therefore, NAMI should keep them at arms-length, and only consider Big Pharma as valuable as the relative benefit from any given drug, and NOTHING more.

Is NAMI pushign Grassley to keep pushing? Is NAMI pushing for autopsies where violence was involvd to SYSTEMATICALLY test for psych drugs, specifically SSRI? No.

And you will NOT see NAMI go there in the near future.

I am not a big player in NAMI, even on the local level. I know ppl, and have given talks to NAMI at local level. I have been a dues-payer.

This is my point of view, for all of the apologists/consumers/family members: cut ties to Big Pharma because otherwise your view is tainted, just like the view of all of these pharma academics who develop these lousy, dishonest, cheating studies for FDA and for JAMA, along with any other journal willing to play along with the charade.

If it were me or my family member, I would gladly say: let's cut 75 percent of our funding to save our soul. Let's get out there for NAMIWalks. Let's have a bake sale. Let's find a millionaire who has a family member with schizophrenia, and let's become their number-one philanthropic endeavor. Let's seek more support from local mental health providers who are willing to look like generous benefactors for a shamefully meager $50 or $100.

Then, get out there and fight for the most critical issues. fight anyone and any group in the way. Fight for yourselves and family members, with no compromise.

To the NAMI person who sees no problem: keep reading this blog, and similar blogs. Keep asking yourself: what is known? What needs to be known? Keep reading and lerning. Ask yourself: what is a BRAIN disorder? How has NAMI picked up that as their cheer, and was it concident with the major turn to Big Pharma funding?

If you are in a decent-sized town, look up AA. They have their own programmatic education/ self-help curriculum. THousands upion thousands have been and continue to be involved in this. And meet regularly. Who "sponsors" AA? Wisely, they decided right off the bat to be FREE. AA early on decided: we are commited to helping fellow alcoholics and drug addicts to get sober. Period. That is the mission. Thus, they accept funding on an extrememly limited set of things, and look to the collection plate for 99% of funding.

Otherwise, Big Pharma would have bought them out long ago. People get sober and stay sober all the time, with no meds. What's up with that? I thought these people were plagued with a BRAIN disorder that can ONLY be treated with corresponding meds? Well, that is the "answer" what Big Pharma is hammering NAMI with right now as we speak.

Many medical doctors who don't know about mental illness basically think anyone with any mental health issue should be on meds all the time. I went to a medical doctor and instead of my regular doctor coming, a different doctor came. When they found out that and that I had a history of medication, they started asking stuff like "Why aren't you taking your medication as prescribed?" "Why aren't you on anything for these symptoms?" "Why aren't you on anything for those symptoms?" They started asking me why I wasn't on medication for each and every symptom or mood and stuff. The doctor then started screening me for depression, anorexia, OCD and several other disorders, asking really obvious questions out of nowhere. The doctor asked my therapist's name and wrote it down and was like saying that I should see my therapist several times a week. What the heck? This medical doctor, who I hardly said anything to, was asking me why I wasn't on medications for this and that, why I wasn't taking medication as prescribed, was screening me for mental disorders, suggesting I go to therapy more and other stuff when I hadn't said anything. I was where for medical reasons, not mental health reasons, and this doctor was just acting awful because I had a history of being on antipsychotic medication. This medical doctor basically believed that anyone who had a history of medication should be on loads of meds all the time and go to therapy repeatedly and this doctor just treated me awfully, trying to find out what mental health thing I had on the DSM by asking me these questions. I didn't say anything about it, but it just upset me. Psychiatrists may suck, but unlike a certain medical doctor, while they may load the patients up on totally inappropriate meds, they don't treat a patient whose been on medication like that. It's just frustrating how being on psyche meds has such a negative stigma attached to it by doctors and health freaks. Most people don't care, but a lot of people do. It's just how some people think that they're superior to others because they don't have mental health issues or any issues at all. Those people are usually people who don't have lives and have never experienced anything in the real world. They judge anyone with issues and- well I'm off topic, but if you don't have any issues, you probably don't have a life either. Wow, this is off topic.

I remember after I had been off my meds for a few months, I was at a psychiatrist's office, a new psychiatrist, since when I got off meds I wasn't going to a psychiatrist, the psychiatrist, who didn't even know me said I was making a foolish mistake by being off medication and assumed that all these medications actually worked and helped me and tried to convince me to go on more antipsychotics and antidepressants and people with anxiety need to be medicated all the time. Sorry for being off topic.

My daughter and I went to two NAMI Parent/Family Support Group meetings, trying to help our collapsing familiy as, unbeknownst and un-understood by us, Zyprexa was making my son sicker and sicker. Soon thereafter, he collapsed and died from profound hyperglycemia.

At the time I didn't know the pharma connection, nor would I have understood it. I begged their ED to warn people. Finally, the exerpted a copy of a story I called in to the responsive Baltimore Sun ....giving the symptoms Japan had required Lilly to place on its label in Japan.

Would I shop in their thrift shop, walk in a walk, or would my urge be to hope that Senator Grassley get to the bottom of their funding as a pharma front group. One whose attendees do not and never will know of the nefarious connections?

I've never been a member of NAMI but I've been to a couple of events and the people there were very much the way I imagine this commenter to be -- earnest souls who think they are really helping as they put up their beautiful colored posters of the brain with the by line "Depression, a Brain Disease" and display books for sale by E. Fuller Torrey and Dmitri Papoulos with big smiles on their faces. For someone with my point of view it was blood chilling to be honest as was the event itself when "compliant" patients got up and gave testimonials to their treatment followed by clapping and cheering. I'm sorry but it's all hopelessly naive and to me the worst kind of manipulation of innocent people by pharmaceutical interests. I, however, decided not to stir the pot and only asked one rhetorical question about treatment that was quickly shot down.

I've been working with some NAMI parents lately (still holding my breath for that Donnie Brasco moment when they figure out who I really am), and many of them have mentioned concerns about pharma funding. Which would be a good sign, except that they don't believe that pharma funding is itself a problem, for the reason this commenter cites: there is no promotion of specific brand names. I don't think that's much of defense, since each company can get an excellent return on its investment just by promoting the use of drugs in general, plus burnish their image when people see them as altruistic rather than greedy, which helps blunt criticism. It shows just how successful pharma influence has been that most NAMI parents take it a priori that their kids need to be on drugs, and believe that the problem with pharma funding is that cynical people know about it and criticize NAMI for not being that grass-roots patient advocates they claim to be.

What I hope both outside critics and NAMI families (some are hyper-controlling child abusers, but most, in my experience, are not) realize is that giving moral cover and practical help for parents to use psychiatry to control their kids has been the central purpose of NAMI since long before they were given pharma millions.

"It's a question of whether NAMI can be a unbiased patient-advocacy group"

Why do you believe NAMI is a patient-advocacy group? This is nonsense. It is not, and they do not present themselves as such. NAMI always has and continues to advocate for relatives (martyrs) of patients.

Do the basic homework or you won't begin to understand the adversarial nature of this organization w/r/t patients and consumers.

Have to agree with you, flawed plan. The MOMS (only) I remember at the NAMI Group (thick, fancy folders given out with a course content) were all sad women. Their sons or daughters had 1. disappeared, never to be seen or heard from again 2. Showed up every now and then, disrupting life and demonstrating next to no loving realtionship with Mom 3. On and on. It was a "woe is me", depressing, and debilitating thing - no goal - no progress - no light shed on reality. At first, I thought - "oh, here are people I can relate to". Then I realized I would never do my beloved son the dishonor of sitting around talking ABOUT him with strangers.

Bogus group. Go Senator Grassley. NAMI Offices across America - a bit of advice: Start getting out of your leases and packing up.

Under the Thresher really understands, it's about control. Everything's been said, any more constitutes a wankfest but I can't let it go... The entire NAMI framework rests on denial of what in essence are relational problems between NAMI members and the faceless, voiceless "loved ones" they justify speaking for as the longsuffering and rational actors. This is the first deception.

NAMI is both insidious and earnest. That's an extreme contradiction (pathology) and complete hell to deal with. Part of its success has got to be related to the self-deception needed to maintain unquestioned and enduring membership in the cult. NAMI would be considered a cult if not for the credibility. NAMI groups are welcomed as philanthropists at local libraries where they donate "mental illness is a brain disorder" books, which they present as an act of public education and outreach. Who can argue with that?

The veneer of

earnest souls who think they are really helping as they put up their beautiful colored posters of the brain with the by-line "Depression, a Brain Disease"

hides a covert agenda, itself a mindfuck and psychologically abusive.

That pronouncement "depression is a brain disease," is defensive. The statement of certitude is not really about what Depression is but what it is NOT.

To declare it a brain disease shuts out other possibilities. It's not the Broken Brain but that particular possibility NAMI editors have in mind when authoring declarations about the Broken Brain.

What is the alternative if Depression is NOT a brain disease?

There are two choices -- nature or nurture -- the framing question humans have been wrestling with for centuries, and not only does NAMI offer the final say in this insoluble debate, it does so by EXCLUDING the very fucking concept of nurture. Nurture simply does not exist in NAMI literature and policy manuals.

We all have stubborn, inflexible tendencies, but come on, you don't pretend there's not an opposing view, not in a good-faith argument, whether you agree with the primacy of nurture or nature in personality development you don't just ERASE a body of scholarship that goes back to the dawn of time and fills the libraries from here to Madagascar. But everyone wants to talk about Big Pharma, when the ideology is begging for a smackdown.

It doesn't matter whether or not a critic of NAMI wants to talk about this. It should be known that NAMI refuses to engage the debate. That can only be a deliberate, covert decision by the decision makers: Argue by declaration (depression is a brain disease) set yourself up as the arbiter of reality, build coercive social policies in line with your wishes. That's what they've done, but they have to spin a mythology for the sake of credibility that does not stand up to cursory examination.

Like NAMI knows it can't win the nature/nurture argument (no one has), so they erase the concept, and hope you won't notice. Nurture does not exist, much less in conjunction with mental disorder. If you were driven nuts in a tyrannical, crazy-making childhood you'd be intense about exposing NAMI. If the general public could see the authoritarianism beneath the carefully groomed fraudulent image NAMI would fall fast. You must see that.

Meanwhile they get to look at their wackaloon kids everyday while denying they left the slightest impression in how their kids turned out. Who believes their parents have no impact on how they turn out? No one. Parents know kids are going to blame them for something, just as they blame their own, it's the norm. But NAMI, who's kids are in and out of psych wards are irrevocably blameless. One more ideological discrepancy NAMI hopes no one notices. It's mindless.

(Insert joke here)

Impossible that people who live in proximity have no effect on one another, much less a godlike parent and developing child, but I imagine NAMI mommies feel as substantial as ghosts, observers of the ruling nightmare they've made of their children's lives. Innocent as the morning dew, meek, obedient, following Dr. Torrey's orders. I get it. They're right because they can't afford to be wrong.

One of my best friends has a younger brother with schizophrenia. She finds NAMI totally unhelpful, can't relate to it at all. She happens to respect her brother.

My sweetie and I used to see a marriage counselor. My parents boast six marriages between them and we're both from incestuous families. You can only imagine how poorly equipped we were for the task of marriage.

It's really hard to find a good marriage counselor, we've discovered. We did find one, however, and over the years he helped us develop the skills we need to keep our little ship of state afloat.

We stopped seeing him, however, about a year after NAMI moved in next door to his office. Now, the local NAMI people are absolutely some of the nicest, most well meaning people I've ever met. BUT, we all know the NAMI party line. Over time our dear marital consultant was infected with their philosophy. He went from urging us to "not serve the abuse in your daily life" to telling my husband "You need to attend these NAMI meetings to learn how to deal with Sherry's disability."

I went from being an equal partner--held accountable for my behaviour, a state of affairs that fostered change and growth--to a problem to be managed. No longer were we a team, no, now were were a "healthy" person and a "sick" person. No longer were we in this together, the seeds of discord and conflict were being sown by the very person we'd turned to for help.

Fortunately, we had become healthy enough, strong enough by then to recognize how dangerous this line of thought was to our marriage so we bailed out of that relationship. This is a man who once told me "Bad systems make good people say silly things." Well, I guess he oughta know that now...

Of course, what makes all this even more absurd is the fact that my in-need-of-management disability stemmed mainly from untreated hypothyroidism, curable by ten bucks worth of quite benign medicine. I apologize for bringing this up yet again. You must all be thoroughly sick of hearing about it. But you gotta admit, it does add one last twist of irony to the story, eh?

WOW!!!

I too was a member of NAMI in the early 1990s. My mother went to some meeting too, but she quit going because she felt people were talking about their relatives. It really bothered her.... yet she bought their line and began referring to my "brain disease" and tried to get me to sign a piece of paper stating I would never go off my meds again.

I even found out she gave money to NAMI. Two years ago I sent her some stuff about how unethical NAMI is in taking this Big Pharma money. And she stopped giving her money to them.

She now supports me 100 percent and sees how I got progressively worse over the years with these psych meds.

I almost lost my relationship with my mom because all she could ever talk about was how I had a "no fault" brain disease.

Now I have her back and she has me back, no thanks to what NAMI taught the two of us: That I had a brain disease that I shouldn't be ashamed of. Huh????

You go Grassley!!!!