Sunday, June 5, 2011

In which I admit many mistaken assumptions

I had always thought that NAMI (National Alliance on Mental Illness) was a good organization, or, at least, a benign one. I had thought that it was the National Alliance for the Mentally Ill, which makes it sound like an advocacy group for those labeled with mental illness. I had believed that it was a group designed by those who were labeled with mental illness, for those labeled with mental illness. In other words, an advocacy group. What could be wrong with that?

As it turns out, plenty.

First off, I just tried to figure out if it was ever called what I had thought is was, and yes, it was founded as the National Alliance for the Mentally Ill in 1979. You may think "what's the difference?" There is a world of difference.

The name now infers authority, not advocacy. 

I have not been able to find out when they changed their name. You'd think this would be a simple piece of information to acquire. Wikipedia doesn't help in this regard. The NAMI entry is short, and at the top of the page, it has the warning that "bad entries" have; a large exclamation mark in a box, and reasons for it being tagged with such. In this case, it has been tagged with "It is written like an advertisement and needs to be rewritten from a more neutral point of view," and the more common, "It needs more references or sources for verification." This is a huge organization. The fact that it has had these tags since 2008 says something, but what, I'm not sure.

In spite of being "written like an advertisement," there is some information on the multiple investigations into the fact that NAMI is funded by pharmaceutical companies. Here is a link to a New York Times article about the alliance between drug companies and mental health "advocacy" groups.

On the NAMI website, if you visit the "About Research" page, you'll see very little. It says "NAMI's Scientific Council," and under that, you'll read "NAMI is currently updating the list of members of the Scientific Council. Please stay tuned for a new listing coming soon!" I do wonder how long this page has been essentially blank, and how long it will stay that way.

NAMI's mission is to fight stigma with education. Sounds good, no? However, their idea of education is to promulgate the theory that mental illness is a physical disease ("just like diabetes"!). Anyone who questions this or provides evidence of helping modalities that are not based on the disease model are, in their view, helping to perpetuate stigma.

I had wondered, in the past, why it seemed that non-drug modalities were so frowned upon by helping professionals and advocacy organizations. They seemed to be fine as adjuncts to drug treatment, but if you want to find out about programs like Soteria, Open Dialogue, and the Seneca House on the NAMI website, for instance, you'll be out of luck.

If a family found out that newly diagnosed schizophrenic son or daughter had a 67% chance of not having a relapse, and would probably be either in school or at work five years post first hospitalization, don't you think that would give them hope? If they were told that after three years, only 8% of those diagnosed with schizophrenia would be re-hospitalized, wouldn't these families feel relieved? This is what the statistics from the Open Dialogue program in Finland show, and yet there is nary a mention of it on the NAMI website. 

I had always thought that schizophrenia was a chronic and lifelong illness. I have, mistakenly, believed it was the only psychiatric "illness" that been proven to be a "real disease." This is not so. For helping promulgate this myth, I am sorry.

The numbers above? They are the statistics for those who have had their first psychotic episode, diagnosed with schizophrenia, and who have not taken neuroleptic drugs.

What are the numbers for those on neuroleptics? 73% have been re-hospitalized at the three-year mark. That is a statistic that would instill fear and hopelessness in anyone. NAMI claims they are "dedicated to improving the lives of individuals and families affected by mental illness," yet the modalities (and statistics that go with them) that would give these individuals and families the most hope are not mentioned on their website. For more statistics and information about schizophrenia that you will not find through NAMI, go here and here. For hope and true advocacy for all mental health issues, visit Mind Freedom International.

If one reads their mission statement carefully, one can get a glimpse into their true philosophy: "NAMI's support and public education efforts are focused on educating America about mental illness, offering resources to those in need, and insisting that mental illness become a high national priority. Mental illness is a serious medical illness that affects one in four families. No one is to blame. Treatment works, but only half of people living with mental illness receive treatment.  NAMI has engaged in a variety of activities to create awareness about mental illness and promote the promise of recovery. (italics mine)" 

NAMI's primary purpose is to get people into treatment for their illness. This means medication.

When I first their Schizophrenia Research page, I was about to applaud them for admitting that something other than medication may be helpful. Under the absurdly named "Family Psycho Education" heading (I kid you not), is information about the efficacy of their 12 week "Family-to-Family" program. One doesn't need a study to prove that having supportive family and friends might be of some value when one has any illness. 

But, leaving that aside, read this carefully (and again, italics are mine):
"Taking medication is not, and should not be the only way a serious mental illness such as schizophrenia is treated. Education and social support are also critical to recovery. However, support is not only crucial for the individual living with schizophrenia; the family and loved ones of this individual sometimes need support as well. A recent study published looked at the helpfulness of enrolling in NAMI's Family-to-Family Program, an evidence-based practice. At the conclusion of the 12-week program, participants demonstrated greater feelings of empowerment and reduced displeasure and worry about the family member who live[s] with mental illness."

This isn't about the person with schizophrenia. It's about making sure their family is more comfortable. Silly me.

Of course, they don't need medication. They're normal! They will benefit just fine from a support program.

The schizophrenics? Drug 'em. If they don't want the drugs, put them in the hospital against their will, and forcibly give it to them.

Think I'm starting to sound over the top? Nope. E. Fuller Torrey, M.D., a psychiatrist, had been an active advisor to NAMI. He is one of the founders of the Treatment Advocacy Center. You can read about him on his organization's website. He practically sounds like a saint; he's been in the Peace Corps, won commendation medals from the U.S. Public Health Service, and NAMI itself gave him a Special Families Award in 1984, and even had a tribute to him in 2005. NARSAD (National Alliance for Research on Schizophrenia and Depression) gave him a humanitarian award.

NARSAD? Oh, this gets complicated! NARSAD is another "advocacy" organization. It has changed its name, too, though their website is still On their "about us" page, it says, "The Brain and Behavior Research Foundation (formerly NARSAD. . .), is committed to alleviating the suffering of mental illness by awarding grants that will lead to advances and breakthroughs in scientific research."

Before I go to far afield, let's get back to E. Fuller Torrey. This saintly sounding psychiatrist is more accurately the stuff of a schizophrenic's paranoid delusion. You can read a short biography of him on Biographicon. Dr. Torrey's life mission, it seems, is the involuntary commitment and drugging of those with "severe mental illness." Don't just take my word for it. There's plenty of documentation about this. 

No, it's not a paranoid delusion, though it surely sounds like one.

For a humorous presentation of all this material, check out Nami Dearest.

I may have not made my point, and I'm tired, though I now realize I did not get around to this: Though the NAMI Scientific Council page is suspiciously empty, and they've publicly distanced themselves from E. Fuller Torrey recently, the two public research institutions that they link to on their "Advances in Research" webpage are NARSAD and the Stanley Medical Research Institute. SMRI's home page states that they are the supporting organization for the Treatment Advocacy Center, "dedicated to eliminating barriers to the timely and effective treatment of severe psychiatric disorders. TAC promotes laws, policies, and practices for the delivery of psychiatric care and supports the development of innovative treatments for and research into the causes of severe and persistent psychiatric disorders, such as schizophrenia and bipolar disorder.(italics mine)"

Who's the executive director of SMRI? E. Fuller Torrey.

I think I've just encountered the devil. Now, that sounds a bit paranoid. I did say I was tired, didn't I?

Truth is, the devil appears to be the parent or sibling of a person who is schizophrenic, or so it seems. Every one of these organizations I've mentioned, and the ones I have encountered, but have not named in this post, have been founded by people who have "loved ones" who are severely mentally ill. These caring people desperately want to found out what the cause and treatment of mental illness is. It appears that they want an answer, and that answer does not include any indictment of the family. Psychological answers are not on their agenda. I have not mentioned that all these organizations are funded by the pharmaceutical companies. That piece of information seems more than obvious. The pharmaceutical companies just love these organizations.

E. Fuller Torrey, founder of TAC: Sister, schizophrenic.
Constance Lieber, founder of NARSAD: Daughter, schizophrenic.
Harriet Shetler, co-founder of NAMI: Son, schizophrenic.
Beverly Young, co-founder of NAMI: Son, schizophrenic.
Almost every NAMI state affiliate website's "about us" page proudly tells the story of how a parent/parents of a schizophrenic founded the local group.

Additionally, two of the largest health care philanthropic groups, the Robert Wood Johnson Foundation, and the Henry J. Kaiser Family Foundation, have ties to for-profit healthcare concerns. Robert Wood Johnson II founded the Johnson & Johnson company, and Kaiser Permanente is a managed care consortium. Both these foundations are also the two largest named private funders of NAMI.

These examples are but a few of the many. When I watch or listen to a program on "public" TV or radio and hear that a program was sponsored by an organization or foundation, like most people, I assume that it is a benign or "good" entity. That is why these foundations sponsor the programs. The programs, in turn, are biased, but we do not see the bias. I had not seen the bias of NAMI. I had not seen the bias of any of PBS' programming on mental health issues. I'll write about these in-depth at a later date. I've written more than enough this evening.

Image Note: Hieronymus Bosch, "The Extraction of the Stone of Madness or the Cure of Folly," c. 1484. Fun little link - click it!

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