A panel of experts answered your questions on John Nash's extraordinary story, on mental illness, treatment, and recovery, in this online forum. The forum was live from April 25 to May 3, 2002, and is now over. The questions and replies are posted here permanently for you to read.

Forum, Day 1

Q: My great uncle, who was in his 30s, was diagnosed with dementia praecox in the 1920s and spent some time in a Richmond, Virginia sanitarium. Could you please tell me what types of treatment he likely received there?

John W. Hancock
Concord, North Carolina

Answered by Alex Beam:
As I am sure you know, d.p. was a catchall diagnosis that included many possible ailments. It would be interesting to know how long he stayed in the hospital.

He would NOT have had "drug therapy," as we understand it today, because Thorazine, the so-called "chemical straitjacket," was not in widespread use until the early 1950s. Nor, I suspect, would he have undergone the shock therapies — electric, insulin coma, or metrazol — because they were not pervasive until the 1930s.

Rest; sedatives; "hydrotherapy." Those would be my guesses.

Q: Schizophrenia is considered a severe and persistent mental illness. Could you clarify the difference between this type of disorder and other types of mental illness such as anxiety disorders or SAD?

John J. Wilson
Edmonton, Alberta, Canada

Answered by Raquel E. Gur, M.D., Ph.D.:
Schizophrenia is a distinct disorder both in symptoms and course, and the underlying biology. While high anxiety is common in people with schizophrenia, they have additional symptoms, including deficits in thought processes, functioning, interpersonal relations and impaired perceptions of reality.

Q: Is schizophrenia hereditary?

C.R.C.
West Virginia

Answered by Raquel E. Gur, M.D., Ph.D.:
Yes. It is more commonly seen in individuals who have other family members affected. The genetics are under study and account for about 50% of illness.

Answered by Irving I. Gottesman, Ph.D.:
The question requires a book-length answer to do justice to the information. I have written such a book (Schizophrenia Genesis, W.H. Freeman & Company, 1991), and it is in the recommended reading list for this American Experience program. I have co-authored an informational guide, "Schizophrenia & Genetic Risks," which is available in the primary sources section of this Web site.

It is the accumulation of facts, all converging on the conclusion that genetic factors, currently unspecified at the level of the genes themselves, and environmental factors, currently unspecifiable, combine in some fashion over time to produce this severe disorder in our species.

Q: Are the delusion characters (of a person with schizophrenia) representative of their alternative personalities, or alter egos?

J.K.
Albuquerque, New Mexico

Answered by Raquel E. Gur, M.D., Ph.D.:
No. Schizophrenia is NOT multiple personality disorder. The delusions are false beliefs that are unique to each individual.

Q: I noticed in the movie "A Beautiful Mind", twice a reference was made to insulin in the treatment of John Nash's illness. Was it common practice in the 50s to bring one's blood sugar down in the treatment of mental illness, or did the word "insulin" have a different meaning in those days?

Linda Kuehn
Las Vegas, Nevada

Answered by John Hsiao, M.D.:
Insulin coma therapy was a commonly used therapy for schizophrenia from the 1930s until the first antipsychotic drugs were discovered in the 1950s. It should not be confused with convulsive therapy, which was also used to treat schizophrenia (and many other mental illnesses) during the same period. Insulin coma therapy involved controlled dosing of insulin to induce a hypoglycemic coma lasting several hours. Treatments were given on a daily basis, and the low blood sugar sometimes resulted in seizures or irreversible coma. When effective medications became available for people with schizophrenia, insulin coma therapy was abandoned in the United States.

Answered by Robert Whitaker:
I'd like to add one note on how insulin coma therapy may have affected John Nash. In the 1930s and early 1940s, asylum physicians observed that this treatment, when administered multiple times, made patients less "self-conscious." The patients' thoughts would interest them less, and they would become less emotionally engaged. Manfred Sakel, the Austrian psychiatrist who invented the procedure, said that at times, the "whole level of personality is lowered." Obviously, this change in "being" would have posed a problem for a mathematician like Nash. In addition, in 1950, a long-term study found that only 6% of patients so treated remained socially recovered three years later, an outcome so poor, they wrote, that it suggested "that insulin therapy may have retarded or prevented recovery." Thus, one wonders today whether Nash might have returned to mathematics at a much earlier date if he had not been so treated.

Q: If a patient is a threat to himself or others, why are they only held at the hospital for 72 hours? Also, after they are released from the hospital, why is there no-one to help them, or help the family care for this person? Our society needs to be made more aware of mental illness!

Sheila Riggs
Trophy Club, Texas

Answered by Alex Beam:
The 72 hours is a legal construct deriving from our tradition of habeas corpus -- a judge does not want to incarcerate any citizen witout due process.

As I understand it, the purpose of the "three-day" is to provide time to find a psychiatrist, or family member -- preferably both -- who will either commit the patient involuntarily, or plead for his/her release. This is not a decision that a judge wants to make alone.

As to the second part of your question, good systems DO assign social workers to follow patients after release, and to help the family with care. The newspaper for which I work, the Boston Globe, tells us today that the state legislature here plans to cut $60 million from mental health care funds, some of which undoubtedly pay for "extras" like social work follow up.

Q: My son, 24 years old, was just diagnosed with paranoid schizophrenia 2 weeks ago. He was placed initially on Zyprexa 10 mg QD and it was increased to 20 mg. He continues to proclaim his lack of need for any medication and becomes very angry with me when I try to explain his illness to him. I try to relate it to any physical illness needing daily medication — i.e. diabetes, hypothyroidism, etc What is the best route to take for a mother to therapeutically support and talk with her son without invoking his misplaced anger?

Susan Hice
Lakeland, Florida

Answered by Robert Whitaker:
I think this is an extremely important question because it raises the issue of how we, as a society, talk about schizophrenia, and whether parents and patients alike are being given candid information. I do not believe they are, and I also believe that we need such candor so that any discussion of taking meds is well informed. Specifically, I think the following is important to consider:

a) We do not know the causes of schizophrenia.

We often hear that drug treatments for schizophrenia are like insulin for diabetes. Unfortunately, this is a misleading metaphor. With diabetes, the biological deficiency is well understood, and insulin is indeed a specific remedy for the illness -- the drug supplies what is lacking in the body. But we have no such knowledge about the underlying biology of schizophrenia. In fact, there may be any number of causes. It may also be that some people so diagnosed have no underlying biological problem, and that environmental triggers (extreme stress, etc.) have caused the schizophrenic break. And the key point for the purposes of this discussion is that without this knowledge, we can't say that the drugs used to treat schizophrenia are like "insulin for diabetes." The drugs do not fix any known biological abnormality.

b) What the drugs do.

We also often hear that antipsychotic drugs "balance" the patient's brain chemistry. This is not true. What the drugs do is block neurotransmitter activity in the brain. For example, it is well established that standard neuroleptics powerfully block receptors for dopamine, which is one of the brain's primary chemical messengers. Olanzapine, the drug mentioned in this question, blocks both dopamine and serotonin receptors. It also blocks adrenergic, cholinergic, and histaminergic receptors. Now blocking these receptors may dim, or even extinguish, certain symptoms of schizophrenia, like hearing voices, but they may also cause a wide range of adverse effects. In the clinical trials of olanzapine, weight gain and sedation were common problems, and there were any number of other side effects reported as well. There is concern that olanzapine raises the risk of diabetes as well. But these adverse effects are not unexpected. Rather they are an expected consequence of blocking the receptors for these various chemical messengers in the brain.

c) Why patients may not like taking the drugs.

People taking antipsychotic medications have widely varying reactions. Some may respond well. But others may find the drugs objectionable for very understandable reasons. For example, they may not like the fact that the drugs make them feel sedated. Or they may complain that the drugs make them feel lethargic. Or emotionally empty. They may also find that the drugs slow their motor movements. Thus, I think it's unfortunate to simply say -- as we often do at a societal level -- that people with schizophrenia resist taking the drugs because they don't know they're ill. In fact, people placed on these drugs may have very rational motives for not wanting to take them, and that is that they don't like how the drugs make them feel (which in turn is related to the fact that the drugs block neurotransmitter activity in the brain).

d) Do the drugs lead to good long-term outcomes?

The other question that should perhaps inform this conversation is this: Do we have reason to be confident that constant medication leads to good long-term outcomes? This is a contentious issue, but here is just one of many curious facts that can be found in the medical literature: The World Health Organization has twice found that outcomes for people with schizophrenia are much better in the poor countries of the world, like India, Nigeria and Colombia, than in the U.S. and other "developed" countries. And in those poor countries, the WHO reported, only 16% of patients are routinely maintained on antipsychotic medications. At the very least, that is the sort of fact that raises some degree of doubt about whether the drugs promote long-term recovery.

In sum, I believe that this issue of "medicating schizophrenia" is much more complicated than what parents and patients have typically been led to believe, and that a more candid, complete view of the disorder and our treatments for it should inform discussions of this type.

Answered by John Hsiao, M.D.:
I would like to comment on Ms. Hice's question about her son and on Mr. Whitaker's answer. Obviously, as a physician working on psychiatric research at NIMH, my outlook and opinions about schizophrenia and how best to treat it differ considerably from Mr. Whitaker's. What I think we would agree on, however, is that schizophrenia is a devastating illness: its symptoms (hallucinations and delusions) are terrifying; having the illness can destroy a young person's life; and family members, particularly parents, who must witness this deterioration often feel powerless and suffer terribly, themselves. Mr. Whitaker and I would also agree on many of the facts about schizophrenia and antipsychotic drugs provided in his answer to Ms. Hice. We do not know exactly what causes schizophrenia. The analogies to diabetes or to "balancing brain chemistry" are sometimes useful simplifications trying to explain a brain disease we don't fully understand. All the antipsychotic drugs have side effects, which in some people, can be really terrible. Treatment with antipsychotic drugs does not guarantee a good long-term outcome, and many people with schizophrenia remain quite disabled socially and vocationally. We need far more research to inform our efforts to help people with schizophrenia and their families.

I take all this as a challenge: we need to improve our understanding of what causes schizophrenia, we need to find better treatments, and as President Bush indicated in his address from New Mexico yesterday, we need to improve and better coordinate our systems for mental health care. Mr. Whitaker (as I understand him) takes our need for continued scientific research and better service integration as an indictment: psychiatry, the pharmaceutical industry, government, and society as a whole have failed people with schizophrenia. So is the glass half full or half empty?

Maybe one of the reasons Mr. Whitaker and I differ in our outlook is that, as a physician, when I see people with schizophrenia and talk with their family members, I have a hard time telling them that the glass is half empty. I tell patients and families that in most instances drug treatment can control of many of the illness' symptoms. I indicate that all drugs have side effects, but that we can often work to minimize them by adjusting the dose, changing drugs, or adding another drug. I tell my patients that this is generally a long-term illness and while they may need to take medications for the rest of their lives, only time will tell. I emphasize that future efforts to reduce medication should be carefully conducted with the monitoring of a physician. I explain that maintaining supportive social relationships, participating in personally meaningful planned activities ranging from rehabilitation to school or work, and avoiding substance abuse are also important elements of illness management and recovery. I am willing to bet that nearly every psychiatrist in America tells his or her patients something similar .

Scientific and theoretical questions aside, many family members of persons with schizophrenia face the same dilemma articulated by Ms. Hice. In the short term, scientific data is clear: following an episode of schizophrenia, medication adherence is a major determinant of outcome: approximately 70% of patients who discontinue medications will experience a relapse and rehospitalization; this figure is reduced to approximately 30% if medications are maintained. Following a first episode of illness it is particularly important to try to avoid a second episode. Studies indicate that the longer medication treatment is delayed, the longer it may take for medicines to reduce symptom severity.

The general goal of medication treatment is to determine the most effective particular medication with the least side effects for the individual patient and over time determine the lowest possible dose of that medication required to prevent recurrence of symptoms. A patient's psychiatrist should be prepared to carefully explore medication side effects, make changes to minimize side effects, and experiment to find a regimen that is acceptable to the patient.

So, to answer Ms. Hice: Yours is a very difficult and painful situation. You have quite enough responsibility and burden already, in taking care of your son, and you shouldn't have to be his therapist and psychiatrist, as well. It's not your job to explain what schizophrenia is or why he should take his medicines. While your support is important, in the end, your son will have to take responsibility for his illness and its treatment.

It would probably be useful for you to talk with your son's psychiatrist and/or therapist (with his permission, of course), asking them questions and telling them what's going on at home. You may also want to contact your local chapter of the Alliance for the Mentally Ill and talk with people there. There are a lot of parents who have gone through what you're going through now and who may be able to advise you on how to handle things. Most of all, you should take care of yourself, and try to make sure that your son's illness doesn't take over your life, as well as his.

Q: Much of the popular press has talked about how the movie, "A Beautiful Mind," shows that schizophrenia is best treated with drugs. In light of the fact that Dr. Nash stopped taking drugs in the 70s shouldn't organizations like NAMI rather than embracing the movie instead be trying to distance themselves from Nash's story? It seems that the message of John Nash's recovery is in direct contrast to NAMI's message. I would like to hear how NAMI and the scientists studying schizophrenia explain John Nash's (true) story because it is in direct contrast to their message that schizophrenia is best treated with medications.

Jonathan Leo
Pomona, California

Answered by E. Fuller Torrey, M.D.:
Almost all of us who do research on schizophrenia have enthusiastically applauded "A Beautiful Mind" for two reasons. First, it depicts the reality of hallucinations for those afflicted with this disease, even though the producer used, for cinematic reasons, visual hallucinations (visions) rather than the much more common auditory hallucinations (voices). Second, by humanizing schizophrenia and emphasizing the brilliant work Dr. Nash did before he got sick, the movie decreased the stigma surrounding this disease.

Most individuals with schizophrenia require medication to control their symptoms and function at a higher level. When John Nash took medication, early in the course of his illness, he functioned much better. He then chose not to take medications and functioned relatively poorly for many years. According to my colleagues who have spoken with Dr. Nash, he is now functioning much better, although not as well as is depicted in the movie. The remission of symptoms is quite common in schizophrenia as people get older and has been described in studies since the 1950s. Thus Dr. Nash has not achieved a "miracle cure," but rather has had a partial remission of his symptoms related to his advancing age. The real tragedy of Dr. Nash, from my point of view, is the wasted years of his life when he was not on medication. It is quite possible that he would have been recognized for his early, Nobel-prize-winning work many years earlier if he had been on medication and functioning better.

Q: Is it true that schizophrenia may be "cured" or "overcome," as John Nash claims he has overcome schizophrenia?

Peggy Reyoso
San Antonio, Texas

Answered by Frederick J. Frese III, Ph.D.:
This is a very good question. The answer varies with time and is a function of who is asked the question.

A century ago, Dr. Emil Kraepelin, the acknowledged "father of psychiatric nosology" and first to identify schizophrenia, was very dubious about the possibility of recovery from schizophrenia. His pessimism continues to be reflected by many today, e.g., George Will's Newsweek review of A Beautiful Mind (January 14, 2002, p. 68), which describes "something extremely rare -- remission from a disease that is almost always irreversibly degenerative."

Because Dr. Kraepelin was such a dominant figure in psychiatric diagnostics, his views continue to be influential. In this regard I often meet psychiatrists and other mental health professionals who hold that if you were diagnosed with schizophrenia and "recovered", then you must have been mis-diagnosed. Obviously this is a tautological perspective and for such professionals, recovery from schizophrenia, in their eyes, is obviously impossible.

At the other extreme, psychiatrist Daniel Fisher, M.D., Ph.D., who has himself been diagnosed and hospitalized with schizophrenia claims that "it's possible to completely recover (Boston Globe, March 3, 2002, p. B1)." This is a view shared by several similarly experienced associates of Dr. Fisher as well as some other consumer/advocates who have been diagnosed with schizophrenia.

My perspective on this issue is also based on my own experience of having been diagnosed and repeatedly hospitalized for schizophrenia as well as having worked with and/or visited with groups of consumers around this, and other countries, virtually hundreds of times during the past twenty years. My feeling on this issue is as follows.

1) Schizophrenia, like other forms of psychosis, is not an "all or none" condition. There are most certainly degrees of the disability. Today, most persons with this condition can improve. Many of us can show marked improvements. Generally, those with greater degrees of disability are not able to improve to the degree that they appear "normal" in all respects. Those of us with lesser degree of disability can appear remarkable improved, sometimes virtually indistinguishable from "normal."

2) Treatments are improving, particularly during the past twenty years. I now meet many more persons who tell me they have been diagnosed with schizophrenia or schizoaffective disorder, who evidence virtually no symptoms during the brief periods of social interaction I have with them. This is true much more today than it was a few years ago.

3) For those of us who currently appear to be less disabled with this disorder, and our numbers appear to be increasing, we probably carry greater vulnerability to being subject to symptoms than those who have never had the condition. We probably also show greater likelihood of showing "schizophrenia spectrum" (paranoid, schizoid, schizotypal, etc.) personality symptoms than others do.

So, to summarize these thoughts as an answer to your question: Schizophrenia can be overcome, to varying degrees. Better treatments, better understanding of the disorder, and, for many of us, the aging process itself, all seem to contribute to this process. If some persons with this condition desire to characterize themselves as "fully recovered" or even "cured," I congratulate them, but I do not feel we are far enough along yet for this to be a realistic goal for those with the more serious forms of this illness.

Q: My daughter is schizophrenic. None of the new medicines help her, so she is on Haldol. Why is this? Also, why can she not make the simplest decision?

M.Y.
Houston, Texas

Answered by John Hsiao, M.D.:
The new, "atypical" antipsychotics have generated a great deal of excitement because they appear to be as effective as the older drugs (e.g., Haldol®) but with fewer side effects (particularly movement disorders). However, there could be any number of reasons why your daughter isn't taking one of the new drugs, and only her psychiatrist can answer this question for you. Whatever the reason, your daughter's situation is not unique. The older drugs still command some 30-40% of the antipsychotic marketplace.

As to your daughter's difficulty with decisions: ambivalence and apathy are all too common in people with schizophrenia, and are examples of "negative", or deficit symptoms. Because many patients do not have a full response to even the best available medications, it is important to continue the search for more effective treatments, particularly for negative symptoms and cognitive impairment.

Q: Why should I believe that mental illness is a "brain disease" when, in fact, there is no proof that it is? Please quote for me the studies to prove this theory is true. Medications fail in the long run for most people with anywhere from bothersome side effects to devastating side effects such as tardive dyskinesia or akathesia, heart problems, and weight gain that can lead to diabetes. If it wasn't a "disease" from the beginning, it will be when the meds are done working on the mind and body.

Ruth Ehrenberg
Longmeadow, Massachusetts

Answered by John Hsiao, M.D.:
When it comes to pharmacological treatment of mental illness, the glass is very much more than half full. The antipsychotic drugs may not have helped you or someone you loved as much as you (or I) would have liked. They are far from perfect. They work better in some than in others, and you are correct to point out that their side effects can range from merely bothersome to devastatingly life threatening. That is why they are used only under a doctor's supervision. However, when used properly -- when they are given to appropriate patients, at appropriate doses, with appropriate laboratory and clinical monitoring -- antipsychotic drugs can be life-saving.

Mental illnesses are not just "problems of living." An illness like schizophrenia can destroy a young person's future just as effectively as cancer or AIDS, and this is no less a tragedy for being an illness of the brain rather than the body. While many studies document measurable brain abnormalities associated with schizophrenia, as well as brain changes associated with treatment, the proof you ask for is not in some dry scientific study, but in the day to day lives of the millions of people and their families who have benefited from mental health care and medications.

Forum, Day 2

Q: Can we as a society really boast about "successful treatment" of the seriously mentally ill as long as the majority of the population who have received treatment are either unemployed or underemployed?

David Clark
Houston, Texas

Answered by Frederick J. Frese III, Ph.D.:
This is another excellent question. It is my experience that even with "successful treatment" many of us with these conditions have difficulty sustaining full time work for long periods of time without being subject to relapse. However, many of us in this situation can work well for shorter periods of time, perhaps a few hours per day.

For this reason it is so important that the work rules for the disabled are being changed. The Federal Ticket-to-Work/Work Incentives Implementation Act was signed into law in December, 1999. The law allows disabled persons to work more than minimal hours per week without losing Medicare, Medicaid, SSI, and SSDI benefits, and if they relapse after returning to full time work they can regain their benefits much more easily. The law also establishes new Employer Networks and issues vouchers directly to consumers who can select from a variety of options to receive vocational assistance to return to work. The law is complex and allows states considerable latitude in implementing the law. Mental health advocates in all states should be trying to ensure that this law, which must be implemented in all states by 2003, is fashioned in as consumer-friendly a manner as possible. I am not sure that this issue is receiving appropriate attention in all states.

In addition to altering the disability laws so that they are more realistic for persons with serious mental illness, we also need to better attack the stigma and discrimination that keep us from being employed. Most employers understand very little about mental illness. In this regard I feel A Beautiful Mind and A Brilliant Madness can be real breakthrough events for us. We now have, for the first time really, major media portrayals of one of us that are realistic, dignified, and positive. Employers are more likely to be sympathetic to hiring someone like John Nash than they are to hiring someone like Hannibal Lecter or Norman Bates. But we need to do much more in this regard. After all, even though one of us has won the Nobel Prize, and another of us has won the MacArthur "genius" award recently (Kay Jamison), most of us have considerably less spectacular talents. Nevertheless many of us do have talents and society will benefit as it begins to more effectively tap this resource. We should not have to win a Nobel Prize or a MacArthur Prize in order to be able to be able to make contributions to society.

Unfortunately discrimination against mentally ill persons is particularly egregious in the mental health establishment and in academia. Most mental health professional schools seem to actively screen out anyone in recovery from mental illnesses. Certainly very few of them give credit for life experience if that experience includes mental illness.

The mental health establishment, including the academic centers, tend to be very pro-active in reaching out to other historically marginalized groups, e.g., ethnic minorities, women, gays and lesbians, etc. But unfortunately they "draw the line" when it comes to the mentally ill. I am afraid that until the academic, professional and government establishment entities responsible for our well-being become willing to take strong action to signal that we can be accepted to work along-side others, employers in general are unlikely to believe that they should hire us.

I have heard all the arguments about how mental health professionals do not want us to become dependent on them and their system. But as long as they will not willingly accept us, they are sending a signal that we are not worthy of being accepted. This unfortunate situation must change. We are human beings and it is time we stopped being laughed at, ostracized, marginalized, and otherwise kept out of the mainstream.

I can not believe how often I hear my fellow professionals use terms like,"nuts," "crazy," "psycho," etc. They do not seem to understand that these pejorative terms perpetuate our being excluded. We need to help them change the traditional way we are perceived.

Thank you for the question.

Q: Do you think the trigger of schizophrenia may, perhaps for many sufferers, be psychological trauma and social stress, hard to tackle for very young people, exacerbated when social support is scarce or lacking? Then it may develop into biological illness?

Yours sincerely,
Berit Bryn-Jensen
Arendal, Norway

Answered by Irving I. Gottesman, Ph.D.:
The most widely accepted broad idea (the big picture) about schizophrenia is that it is the result of a predisposition (or diathesis) combining with some kind of stressor (prenatal, perinatal [at the time of delivery], or postnatal). A great deal of effort and money has been expended worldwide for the past 50 years to put meat on these bones, with moderate success in my opinion. However the complexities involved (see the issue of Science magazine for April 26, 2002 for an in-depth treatment of the "puzzle" of complex diseases) require even more effort and funding to make progress toward understanding that will result in the practical results for treatment and prevention of this dreaded disease.

Common sense answers as to what constitutes relevant stress are often disproved when put to empirical testing; for example the incidence rates of severe mental illness did not rise in the United Kingdom when the population was subjected to the blitz of German bombs and rockets during World War II. And, what is a stressor for me may not be a stressor for you, depending on our life experiences and our individual resistances to different stressors. The reoccurrence of a psychotic episode in persons currently in good remission can be delayed or prevented by proper psychological support, in consumers taking their medications, as demonstrated by the programs of research from the University of Pittsburgh by Dr. G. E. Hogarty and colleagues, and from UCLA by Dr. R. P. Liberman and colleagues.

Q:I am reading and hearing that electro-shock treatment is becoming more popular for patients who suffer from schizophrenia. My son, who is 29 and suffers from schizophrenia, refuses medications and insists he would rather deal with schizophrenia than the medication's side effects. He has used several, including Thorazine, Haldol and Risperdal. None took the voices away, although they had a positive impact on his behavior from my perspective. I have become more concerned about his decision not to take medications as I see his ability to think and understand simple issues deteriorate.

My questions are: should electro-shock therapy be considered for treatment on patients with schizophrenia who may be inclined to refuse medications? Is there current research on this method of treatment specific to schizophrenia?

M.L.C.
Orlando, Florida

Answered by E. Fuller Torrey, M.D.:
Electroconvulsive therapy (ECT) is an alternative treatment for schizophrenia and, as such, is more widely used in Europe than in the United States. Before it is used, however, individuals should be given a trial of the newer antipsychotic medications, which, for some individuals, will have fewer side effects. Modern ECT is done using unilateral electrodes over the nondominant lobe to minimize memory loss. Some memory loss may nevertheless occur and is the major side effect of the procedure. Despite Scientologist claims to the contrary, there is no evidence that ECT causes any damage to the brain. Some patients respond to as few as 12 ECT treatments, whereas others need 20 or more. Max Fink, an expert on ECT, recommended in his recent book that "a minimum course of ECT for effective relief of psychosis is one that continues for at least six months." For individuals who respond well to ECT but rapidly relapse, it is possible to use monthly maintenance treatments, and these are quite commonly used in Europe. The best source of information on ECT is the book by Dr. Fink: Electroshock: Restoring the Mind (Oxford Press, 1999).

Q: What is being done about the lack of sufficient numbers of mental health professionals willing to work with the severely mentally ill, including children?

Joann Turner
Davis, California

Answered by Alex Beam:
Here I can only speculate, and say: very little. Nursing, not unlike primary and secondary school teaching, isn't particularly well paid. Psychiatric nursing is not the most highly paid specialty, nor for that matter the most desirable. I have friends in nurses' unions, but I'm not aware of any of the major mental hospitals here (in the Boston area) having a unionized staff.

Social workers, generally speaking, are even less well paid. And, as I wrote to a previous questioner, money is moving OUT of mental health services right now, not in. So I don't see too much cause for hope in the future.

Q: People with schizophrenia recover and thrive as self-determining citizens in their communities. How can we stop coverage that sensationalizes, emphasizes outlier violence, stereotypes people with schizophrenia as needing substituted judgment?

Sylvia Caras
Santa Cruz, California

Answered by Robert Whitaker:
The stereotyping of people with schizophrenia runs deep in our society, and that stereotyping has far-reaching consequences. Here are three things that I believe would help fight this problem.

a) Expand the public dialogue so that it includes the voice of "consumers."

Stereotypes tend to flourish when people in the stereotyped group are not heard. And that is one of the problems we have today. Public discussion of schizophrenia (in the media, etc.) is driven largely by three groups: psychiatrists and other scientists involved in psychiatric research, the National Alliance for the Mentally Ill, and the pharmaceutical companies that manufacture antipsychotic drugs. What is missing from this dialogue is the voice of "consumers," particularly those who may not share the views of the three groups mentioned above. Consumer groups can be found at both a local and national level. For instance, in the Boston area, there is a group that works on state issues called M-Power. In nearby Lawrence, Massachusetts, several people who have recovered from schizophrenia run the National Empowerment Center. Many of these local groups, in turn, belong to a national organization called Support Coalition International. The leaders of these groups are very articulate and thoughtful, but, unfortunately, their perspectives are rarely heard. Indeed, it is revealing that this voice -- of consumer-run groups -- is missing from this online panel.

b) Rethink the "broken brain" message.

The public message that we hear today about mentally illness, one that is supposed to take away the stigma, is that the mentally ill suffer from "broken brains." The message seems to be, "It's not their fault." Personally, I think that is actually a deeply stigmatizing message. It is also one that, from a scientific standpoint, doesn't accurately reflect the natural spectrum of outcomes in people diagnosed with schizophrenia.

The "broken-brain" metaphor implies that people so diagnosed are "different." In the public's mind, it draws a line separating the "normal" from the "abnormal." If we want to destigmatize mental illness, I think we need a message that emphasizes, so to speak, our "alikeness." In the 19th century, for instance, Quakers emphasized that the severely mentally ill were "brethren," a concept that is wonderfully inclusive. That's what I think we need today, a public message that says, yes, people diagnosed with schizophrenia may grapple with their minds, and yes, there may be biological reasons for why they do so, but that doesn't mean they should be seen as having "broken" brains. That is a term that puts a "defective" stamp on people so diagnosed.

From a scientific standpoint, the "broken brain" metaphor also doesn't reflect the diversity of recovery patterns you see in people with schizophrenia who aren't routinely medicated. In the 1970s, for instance, there were three studies funded by the National Institute of Mental Health that involved treating newly diagnosed patients without neuroleptics. In each one, more than 50% of the patients recovered and didn't relapse in a follow-up period that ranged from one to three years. The World Health Organization, meanwhile, found a similar pattern of recovery in poor countries, like India, Colombia and Nigeria, where only 16% of patients in the study were routinely kept on antipsychotic medications. Two years after diagnosis, 40% of the patients in the poor countries had recovered and were "unimpaired." In other words, they suffered a schizophrenic break and then got better. They didn't become chronically ill and they didn't need constant medication. That is not an outcome consistent with the notion that all people who are diagnosed with schizophrenia have "broken brains," or suffer from a "disease" that will require them to take medication all their lives.

c) Get good data on the violence issue.

Public policy is often driven by fear of the severely mentally ill. But what is the real data on this issue? Do the severely mentally ill commit homicides or violent crime at any greater rate than the general population? Prior to 1955, when neuroleptics were first introduced, four studies found that patients discharged from mental hospitals committed crimes at either the same or a lower rate than the general population. Has this changed? And if so, why? The other part of this story that we never hear about is violence against the mentally ill. They are at dramatically heightened risk of sexual abuse, assault, etc.  in other words, they have more reason to fear society than society has to fear them. We need to have some good studies that look at both sides of this question, and then perhaps this violence stereotype can be laid to rest.

Q: Doesn't current medical evidence show long-term use of neuroleptic psychiatric drugs can cause structural brain changes and cognitive problems? So wasn't Nash right -- that neuroleptics could have ruined his beautiful mind? And shouldn't neuroleptic users be warned?

David Oaks
Eugene, Oregon

Answered by Raquel E. Gur, M.D., Ph.D.:
Anatomic changes and cognitive difficulties have been documented in individuals with schizophrenia who have never been exposed to treatment with anti-psychotic medications. Therefore we can not conclude that treatment causes the brain changes and the cognitive deficits. Few studies have examined people longitudinally and the findings at this point are not conclusive.

Q: If schizophrenia is a biological disease, then why do schizophrenics fare better in nonindustrial countries where schizophrenia is not viewed as a chronic disease requiring treatment with medication?

Ben Hansen
Interlochen, Michigan

Answered by John Hsiao, M.D.:
Schizophrenia is considered an illness and antipsychotic medications are used for its treatment in every country in the world -- industrialized or nonindustrialized. While there are individuals or groups who deny the overwhelming scientific evidence that schizophrenia is a brain disease, or who do not accept using drugs to alleviate its symptoms, they are not part of the mainstream in any land.

This was not always the case. Until the 1970s, there was active debate about whether schizophrenia was a disease of the brain and whether it existed in every culture. To answer this, the World Health Organization (WHO) carried out a large multi-national study in the early 1970s, and found remarkably similar incidence and prevalence rates for schizophrenia at various centers around the world (i.e., schizophrenia exists in all cultures). Patients who participated in this and other WHO multi-national studies of schizophrenia were followed for extended periods and some of this follow-up data suggest that patients treated in developing nations have better social and vocational outcomes than patients treated in more developed nations. This difference in outcome may be an artifact of how patients were recruited and followed in different countries, but if "real," it may reflect less demanding lifestyles and more intact family and community support in developing nations.

Q: I'm a paranoid schizophrenic and have been in treatment for about 10 years. So, I know where Dr. Nash is coming from. Question: What new schizophrenia medications are in the pipeline at this time? Will these new drugs be more specific in their effect? That is, what about undesirable side effects like TD and akathesia? Believe me, the side effects I mention can be so severe for some people that they decide to quit taking their medications! Answers please!! Thank you so much.

L. Ryan
El Cajon, CA

Answered by John Hsiao, M.D.:
There are a number of new compounds being developed by the pharmaceutical industry to treat schizophrenia. Two in particular, iloperidone and aripiprazole, are rumored to be on the verge of a New Drug Application: a request by the sponsoring pharmaceutical company to the Food and Drug Administration (FDA) to review all the safety and efficacy data the company has gathered, and to approve marketing of the new drug. There are multiple other compounds at earlier stages in the testing and approval process. When the drug manufacturer files for FDA approval, what, if anything is special about these new antipsychotic drugs will become public. Until then, the information is closely guarded by the manufacturer. Keep in mind that as far as motor side effects like tardive dyskinesia (TD), akathisia, and dystonia are concerned, previously approved atypical antipsychotics (clozapine, risperidone, olanzapine, quetiapine, and ziprasidone) already appear to be quite a bit better than the older antipsychotics.

What may be more interesting than new drugs from the pharmaceutical industry are some new approaches to drug development, particularly identification of medications with fundamentally new mechanisms of action (all currently available antipsychotic medications act on the dopamine neurotransmitter system). For example, there have been a number of preliminary studies demonstrating that modulation of the glutamate neurotransmitter system may have beneficial effects on "negative" symptoms (withdrawal, apathy, amotivation).

There is also considerable interest in drugs that might improve cognitive function in people with schizophrenia. The NIMH has undertaken a new initiative to identify aspects of cognitive impairment that may respond favorably to pharmacological interventions and to collaborate with industry to develop new drugs for this purpose.

A nonpharmacological approach to treatment is being tried out in preliminary studies supported by NIMH. Transcranial magnetic stimulation is being used to transiently and noninvasively suppress electrical activity in selected brain regions, hoping to suppress auditory hallucinations in people with schizophrenia.

Finally, one should keep in mind that as well as looking for new drugs and treatments, it's important for us to learn how to use existing treatments better. It may be a long time before we find the "magic bullet" that cures schizophrenia, but in the meantime, we have a number of pharmacological and psychosocial interventions already proven to be helpful. An analogy here might be made to cancer treatment. There are many antineoplastic drugs that have modest effects when given alone, but that are much more effective when given in combination. Similarly, in schizophrenia, there may be great benefit to combining different pharmacological and psychological treatments to optimize long term outcome and function for people with this devastating illness.

Q: My question is for Dr. Hsiao: The NIMH advertises clinical trials. The participants receive PET scans and neuropsych. testing as well as dealing with the best physicians in the treatment of mental illness.

Could you describe how you handle the placebos given to some participants? My daughter refuses to get this thorough workup for her brain disease because she is worried that if given a placebo, she will be psychotic during the drug trials. When they are over, she will be sicker than when she arrived.

As she is indigent, I would like for her to get the best psychiatric workup possible, as her diagnosis seems to drift between bipolar and schizophrenic.

E.L.C.
Granby, North Carolina

Answered by John Hsiao, M.D.:
Many NIMH-sponsored research studies do not involve placebos. You and your daughter may be interested in NIMH's Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) project. If your daughter is over 18, she may be eligible for a randomized clinical trial comparing the new atypical antipsychotics with each other and with a conventional antipsychotic in people with schizophrenia. The trial involves randomized double-blind treatment, but no placebo. It is being conducted to determine the long-term effects and usefulness of antipsychotic medications in persons with schizophrenia, and is designed for people with schizophrenia who may benefit from a medication change. All participants will receive an initial comprehensive medical and psychiatric evaluation and will be closely followed throughout the study. For most participants the study will last up to 18 months. Everyone in the study will be offered an educational program about schizophrenia and family members will be encouraged to participate. There are 50 clinical sites spread across the United States, including several in North Carolina. For more information, including how to find the closest site, you and your daughter could go to: http://www.nimh.nih.gov/studies/2schpsydiscatie.cfm.

While the CATIE schizophrenia trial does not involve a placebo, your daughter's concern that she might become psychotic if placed on placebo treatment is very reasonable. If she is interested in participating in a study that involves either placebo treatment or discontinuing her antipsychotic medication, the study coordinator will warn her specifically about the risk of relapse and will tell her how the study will handle things to ensure her safety if she should relapse. This isn't just a matter of ethics on the part of researchers. It's the law, and it applies to all human research, not just federally-funded studies.

You should be aware that at this time PET scans are largely an experimental tool for studying metabolic abnormalities in neuropsychiatric and other disorders. The routine evaluation of schizophrenia or bipolar disorder does not require PET scanning. Neuropsychological testing is used for research, but also can be helpful in guiding rehabilitation for patients with these disorders.

Forum, Day 3

Q: How do you feel about using videos of those having an episode to help them understand the effects of the illness on them and the frustrations of explaining how they acted as they deny remembering any of it?

J.S.
Wilmington, North Carolina

Answered by Frederick J. Frese III, Ph.D.:
I have some limited experience with such a procedure. From the experience that I have had I have found it valuable. Often the person in psychosis does not realize how they are seen by others when they are in such a state. To allow them to see themselves in such a condition can be a good experience for them.

Q: Why is it that good psychiatric treatment is so expensive, even with health insurance? It seems to me that we as a society are saying that mental health care is only for the well-to-do.

S.J.
Princeton, New Jersey

Answered by Alex Beam:
As I am sure you know, the issue of mental-health "parity," meaning equal treatment of mental and physical health by public and private insurers, is currently the subject of hot debate in the U.S. Senate and elsewhere. I am virtually certain that "parity" will not become a reality any time soon, but I am a great pessimist.

The 50-minute psychiatric "hour" is not particularly expensive, so presumably you are referring to the kind of residential therapy that, to be blunt, belongs to yesteryear. If you saw this documentary, John Nash was at McLean Hospital for 50 days, which was then deemed close to the minimum stay. Now, of course three to five days residential stays are considered good deals, and few insurance plans cover more than that.

And of course drugs are expensive. At the threshold level, Lilly was working very hard to create a "new" Prozac, so that "old" Prozac would not seem like a bargain when it went generic. Although that effort did not succeed, psychiatrists are under pressure to prescribe newer, presumably better — and thus more expensive -- drugs.

Q: At a recent preview of [A Brilliant Madness] at WGBH in Boston, inference was made that the effects/grip of schizophrenia might lessen or "plateau out" (my words) with age. Is there evidence of this, and if so, what are the studies? At what age might one expect lessening of the intensity of the disease? What variables affect its intensity? Are there genetic studies underway?

M.K.
Nahant, Massachusetts

Answered by Irving I. Gottesman, Ph.D.:
It is not merely a cop out to start out by saying that "it depends." A consensus does exist that concludes that an appreciable proportion of individuals who develop schizophrenia and are then followed for 10 to 30 years or more appear to recover from their worst periods of psychosis. Although some of my fellow researchers use the term "completely recovered," I am more realistic and can talk about social recovery. That proportion may be as high as 25% or so, quite impressive given the dire prognostication alleged to have been observed by Kraepelin early in the 20th century. One of many complications to interpreting the follow up data is that 10% to 13% of sufferers commit suicide (see C. B. Caldwell and I. I. Gottesman in the Schizophrenia Bulletin in 1990) and are lost to follow up; another is that the anonymity of homelessness claims many of the victims and they too are lost to follow up. Bleuler (the son of Eugen Bleuler who gave us the term schizophrenia in 1908) provides case histories in his 1978 book (Chapter 4) from Yale University Press that mirror the kind of recovery seen in John Nash Jr. Bleuler also suggests that the worst periods of symptom severity occur during the first 5 years; after that the patient will not get worse and may improve, given an optimal supportive environment and optimal medication.

The best studies of 30 year or more follow up come mainly from Switzerland and Germany (M. Bleuler, G. Huber, L. Ciompi) and one from Vermont; the latter is by Dr. Courtenay Harding who summarizes all the studies (1988 in the Schizophrenia Bulletin and 1992 in the British Journal of Psychiatry).

In regard to your query about genetic studies underway, they are too numerous to list. It is rare to find a single issue of the major journals without one or more reports of ongoing genetic work at various levels: genetic epidemiology, endophenotypes, gene linkage and association, gene expression, and epigenesis. Scan the following journals in particular: Molecular Psychiatry, Neuropsychiatric Genetics, American Journal of Psychiatry, Archives of General Psychiatry, and Nature Genetics.

Q: Do you think there is a connection between John Nash's strenuous profession and his illness? Do you think that people with higher intelligence are more susceptible for this illness than other people?

M.H.
Augsburg, Germany

Answered by Irving I. Gottesman, Ph.D.:
It is very difficult to distinguish between events at the beginning of an episode of psychosis being triggers to some predisposition versus the actual worsening of "prodromal" symptoms. Higher intelligence would be expected to be a protective factor, postponing the development of psychoses. However no group is immune to developing a disorder such as schizophrenia, and it can be observed in all walks of life and at all levels of social class. The observed excess of cases in the lower economic rungs of our society are best explained by downward social drift accompanying the onset of prodromal symptoms of schizophrenia; the latter conclusion was reached by examining the social class of rearing rather than the social class at the time of admission to hospital [reviewed in Gottesman (1991) in the bibliography].

Q: I am concerned that many psychiatric patients are being treated as guinea pigs. I have read news stories indicating forced medication may be the next thing on the horizon and already is being used in some states through "involuntary outpatient commitment." How do members of your panel feel about forcing someone to be drugged against their will?

Ryan Dans
Chicago, Illinois

Answered by Robert Whitaker:
Forced treatment has basically always been a part of involuntary commitment to a mental hospital. However, many states are now passing "involuntary outpatient commitment" laws, which, in essence, are designed to make certain that people so committed continue to take their meds. Personally, I think this extension of state authority over the "mentally ill" is misguided, and a big step backward in our country's treatment of the mentally ill.

First, most consumer groups are against this legislation. They see such laws as a violation of their civil rights and counterproductive (in that such legislation will drive people away from voluntary treatment). These are the people who have been through the mental health system, and who may know what it is like to be forcefully treated, and I would think that gives their opinion a moral authority that we, as a society, should listen to.

Second, the drugs used to treat severe mental illness are designed to change how the brain works, so to speak, which means forced treatment is a profound intervention. If a person is living in the community and hasn't been charged with any crime, then how does the state have the moral right to force this change on them? If the goal is to get certain people to take antipsychotic medications, then programs that seek to achieve this in a cooperative manner should be pursued.

Third, the diagnosis of schizophrenia is known to be affected by class and racial status -- it is a diagnosis more quickly given to the poor and to African Americans. So you can see how such outpatient commitment laws can lead to forced drugging of certain groups in society, which has its obvious ethical problems.

Finally, the understood premise behind outpatient commitment laws is that antipsychotic drugs are helpful, as a matter of course, for the mentally ill. The problem with this premise is that the drugs may cause a lot of problematic side effects, and, as many patients have complained, may diminish their capacity to experience the world around them. Indeed there is a notable absence of studies in the medical literature showing that the drugs lead to an improved quality of life over the long term. In fact, Harvard researchers reported in 1994 that outcomes for schizophrenia patients in the U.S. had declined over the past 20 years, and were now no better than they had been in the first decades of the 20th century, when wrapping the insane in wet sheets was the therapy of the day. Outcomes studies like this one undermine even the medical premise behind forced treatment.

Forced treatment has historically driven a wedge between society and the "mentally ill," and extending forced treatment into the community, I think, achieves that very result.

Q: Why is the success rate that people recover from schizophrenia higher in cultures that don't use psychotropic medications to treat it?

D.J.
Crossville, Tennessee

Answered by Robert Whitaker:
This is the question that got me interested in this subject nearly four years ago.

In the 1970s, the World Health Organization conducted its first study comparing outcomes for schizophrenia patients in "developing" countries with those in the U.S. and other "developed" countries. The study followed patients for five years, and it found that 64% of the patients in the poor countries had outcomes that could be categorized as good at the end of this period, versus 18% in the rich countries. The difference in outcomes was so dramatic that the WHO concluded that living in a developed nation was a "strong predictor" that a schizophrenic patient would never fully recover.

In response to these poor results, some Western psychiatrists argued that the difference wasn't real, and that many people in the poor countries must have been suffering from milder forms of psychotic disorders. So in the 1980s the WHO conducted a second comparative study, paying close attention to this diagnostic question, and came back with the same answer. In this 2-year study, 63% of patients in the poor countries were in the good-outcomes category, versus 37% in the developed countries. Now the WHO didn't come up with a reason for this difference. However, in the second study, it did note that there was a noticeable difference in medication use. In the developing countries, only 16% of patients were routinely kept on antipsychotic mediations, versus 61% of patients in the developing countries.

This raises an obvious question: Was the variation in drug use the reason for the difference in outcomes? I know that it seems like medical heresy, and against all accepted wisdom, to even think that this might be so, but I thought that at least I could look at what our own research showed regarding the use of neuroleptics and long-term outcomes.

Here are some of the main findings in our own research literature that provide, I believe, rather compelling evidence for why poor outcomes would be associated with constant use of neuroleptics. (I should note here that the research below is related to standard neuroleptics --Thorazine, Haldol -- and not to the newer atypicals like risperidone and olanzapine.)

• Standard neuroleptics work by profoundly blocking dopamine activity in the brain. At a therapeutic dose, they block 70% to 90% of all D2 receptors (this is a particular type of receptor for dopamine). So rather than balance dopamine activity in the brain, standard neuroleptics actually produce a notable deficiency in dopamine transmission. Indeed, it is a deficiency somewhat similar in kind to what occurs in Parkinson's patients, which is why standard neuroleptics so often cause Parkinsonian symptoms. This blockage of dopamine activity is also why many patients on standard neuroleptics complain of feeling empty inside -- dopamine is involved in mounting emotional responses to the world.

• In 1959, researchers reported that the drugs could cause tardive dyskinesia (TD), a form of often irreversible motor dysfunction. Later, researchers determined that this affected 5% of patients per year, and that the effect was cumulative (10% of patients kept on drugs two years, 15% at end of three years, and so forth.). More than 20 studies have also now found that tardive dyskinesia doesn't simply impair motor movement, but that TD patients are also cognitively impaired on a variety of measures, which include memory, intellectual functions, etc. Some researchers have compared TD to Huntington's disease, or "postencephalitic brain damage."

• In 1963, the NIMH reported that neuroleptics were better than placebo over a six-week period in reducing psychosis, a study that is still cited today as showing the drugs' efficacy. However, the NIMH then did a one-year followup study of the patients in that first 6-week trial, and they found, much to their surprise, that the drug-treated patients were more likely to have been rehospitalized than those treated with placebo. This suggested that while the drugs produced a short term benefit, over the long-term they actually made people more biologically vulnerable to psychosis. (This long-term study is almost never cited, and was quickly forgotten.)

• In 1971, the NIMH reported that in a drug-withdrawal study, relapse rates rose in direct correlation to drug dosage, such that the higher the dosage before withdrawal, the greater the relapse rate. This furthered the sense that the drugs were causing some sort of biological change that made people more biologically prone to psychosis. Around this time researchers also reported that it appeared that relapse in drug-treated patients was more severe than relapse in placebo-treated patients.

• These disturbing results led the NIMH to fund at least three studies in the 1970s that compared treatment with psychosocial care and minimal or no use of neuroleptics with conventional care. Each time relapse rates were lower for the experimental group over follow-up periods ranging from one to three years. The favorable outcomes in these studies led some researchers to conclude that there was, at the very least, a subgroup of schizophrenia patients -- 40% or more of all people so diagnosed -- who could do well without the drugs.

• In 1979, Canadian investigators put forth an explanation of why the drugs could make people more biologically vulnerable to psychosis. In response to the blocking of dopamine activity, the brain tries to compensate by increasing the number of its dopamine receptors, thus becoming "supersensitive" to this neurotransmitter. Once a person's brain undergoes this change, then he or she is at very high risk of relapse should the drug be abruptly withdrawn. As the Canadian investigators concluded: "Some patients who seem to require lifelong neuroleptics may actually do so because of this therapy." This finding has particular relevance for the sub-group of patients, 40% or more, who had done well in the trials in which they were treated with psychosocial care. They may not have naturally needed neuroleptics, but once they were exposed to the drugs, they would likely find it difficult to get off them, and thus would be pushed along a path that involved lifelong medication, with all its associated problems.

• In the past decade, there have been several MRI studies that have documented structural changes in the brain associated with neuroleptic use. These drug-induced changes include atrophy (or shrinkage) of the cerebral lobes, and an abnormal enlargement of the basal ganglia area of the brain.

That is the bare outline of the research record involving standard neuroleptics, and it is, I believe, a research record that provides rather convincing evidence of why our Western paradigm of care  that patients diagnosed with schizophrenia as a matter of course need to take antipsychotic medications indefinitely -- produced the poor outcomes found by the WHO. It's important to reiterate, however, that this is a research record related to standard neuroleptics. One hopes, of course, that long-term outcomes with the newer atypicals will prove much superior, but that research record is still in its early stage.

Q: Is there ever any anguish among such groups as Dr. Torrey's Treatment Advocacy Center to zealously promote more forced treatment for people they deem requiring such treatment if other people become caught in the dragnet. In other words there is clearly a vested interest for some hospitals to involuntarily commit people who have lucrative private insurance. Would it bother you that these laws may make it easier to commit people even though they don't fit into the criteria you usually describe as needing "assisted" treatment.

Robert Legge
Etlan, Virginia

Answered by E. Fuller Torrey, M.D.:
Various forms of assisted treatment and involuntary hospitalization are used for some individuals with severe psychiatric disorders who are not aware of their own illness (because the disease has damaged the part of their brain that governs self-awareness) and who are dangerous to others or to themselves. Assisted treatment and involuntary hospitalization are also used for some individuals with other types of brain disorders, such as Alzheimer's disease.

Everybody involved in the use of assisted treatment and involuntary hospitalization should be concerned about potential abuse of this procedure. The involuntary psychiatric hospitalization of political dissidents in the Soviet Union was well documented. And even today in Japan, it is possible for a psychiatrist to involuntarily confine a patient in a private psychiatric hospital that is owned by the psychiatrist. This is why judicial authorities must always be involved in this process and why the person in question must always be provided with legal representation and redress.

During the eight years in which I worked as a psychiatrist at St. Elizabeths Hospital in Washington, D.C., I sought outpatient commitment, a form of assisted treatment, on multiple occasions. The patients were represented by very competent public defenders, and I had to convince a judge that this deprivation of the person's liberty was justified. That is as it should be.

Those who argue that assisted treatment and involuntary hospitalization are never justified because of the possibility of abuse are, knowingly or unknowingly, sentencing thousands of mentally ill people to continuing homelessness, victimization, incarceration for misdemeanor crimes committed because of their mental illness, suicide, and premature death caused by our failure to provide them with medications needed to control their symptoms. The no-involuntary-treatment stance is thus not merely an abstract civil rights issue. I believe that it is possible to provide individuals with assisted treatment, when necessary, and to do it in a way that minimizes any possibility of abuse. Isn't that what we have 900,000 lawyers for in the United States?

Forum, Day 4

Q: After watching the John Nash story on PBS, could schizophrenia have actually played a much larger role in Mankind's critical thinking evolution, without us realizing it? For example, in the Bible and Koran the phrase "God spoke through the prophet" Moses, Mohammad, Joan of Arc. It would be interesting to study and determine how many famous historical and inventive people were actually schizophrenic.

J.B.W.
Gaithersburg, Maryland

Answered by Alex Beam:
If you go to JohnNash's autobiography on the official Nobel Web site you can see that Nash himself is thinking along your lines. He, too, realizes that "madness" may be a quality shared by religious leaders. This is a brief, autobiographical essay that he wrote for the Nobel web page, and here is a small excerpt:

"For example, a non-Zoroastrian could think of Zarathustra as simply a madman who led millions of naive followers to adopt a cult of ritual fire worship. But without his "madness" Zarathustra would necessarily have been only another of the millions or billions of human individuals who have lived and then been forgotten."

Q: My brother has schizophrenia and I have a six year old son. Knowing there is a genetic component to the disease, is there anything I can do to "protect" my son? Experiences to have, avoid, etc?

L.L.
Elmhurst, Illinois

Answered by Irving I. Gottesman, Ph.D.:
A context for understanding the implications of your important question can be found by reading the brief genetic counseling pamplhet I wrote for NAMI with my co-author Dr. Steven O. Moldin of the NIMH.

Your question and others dealing with the risk for developing schizophrenia in the future for a relative of a consumer with a verified accurate diagnosis of this disease requires an individualized answer after a face-to-face review of the facts. An approximation to the correct range of risk values will depend on such things as the pedigree structure of the family out to second degree relatives (grandparents, aunts, uncles) counting not only the ill but also the well. The more healthy relatives, the lower the risk.

Please, in your situation, do not spend the next 20 years "waiting for the other shoe to drop" as that is, on average, not likely. As a ballpark figure, consider that the average risk to nieces and nephews of a patient after they become adults is under 3%; the risk to a random member of the general population is about 1%. I would suggest that it is much more practical to protect your child from the more common risks associated with tobacco, street drugs, and alcohol -- by example and with a strong school-based education program in healthy living.

You may wish to consult the useful Web page set up by the National Society of Genetic Counselors and look for an agency nearby, especially one that specializes in complex disease such as diabetes, heart disease, and other complex diseases involving genetic predispositions plus non-genetic contributors.

Q: There was a clear suggestion in the TV show "A Brilliant Madness" that Nash's brilliance and mathematical creativity was related to his schizophrenia, although it also interfered with his work. Would the panelists agree that schizophrenia can have positive features, and if so, what implications does this have for treating the disease?

Christian Perring
Oakdale, New York

Answered by Irving I. Gottesman, Ph.D.:
I heard Sylvia Nasar speak at a NARSAD fund raiser a couple of weeks ago, and she took care to undermine any implied causal relationship between schizophrenia and John Nash's genius. If I were given the chance to become a genius, but had to develop schizophrenia first as the price, I would run away from such a "deal" as fast as possible. I cannot say, after 45 years of close experience with schizophrenia, that it has any redeeming features. Others have likened it to a cancer of the mind. It will take teams of dedicated scientists from a number of different disciplines in the neurosciences and medicine and mathematics to make progress on treatments and, eventually, prevention for this scourge of the mind.

Q: Bob Whitaker: In response to a question online, you mentioned the "World Health Organization has twice found that outcomes for people with schizophrenia are much better in the poor countries of the world, like India, Nigeria and Colombia, than in the U.S. and other "developed" countries. And in those poor countries, the WHO reported, only 16% of patients are routinely maintained on antipsychotic medications."

I am very interested in this as my 29 year old son does not take medication, and after this many years I suspect he may never. What are these countries doing to help people live with this illness? Can you direct me to any articles where I might read up on this? Thank you.

M.L.C.
Orlando, Florida

Answered by Robert Whitaker:
One writer who addresses this question in some depth is Richard Warner, in his 1985 book, Recovery from Schizophrenia. He looked at the results of the first World Health Organization (WHO) study, and has a chapter titled "Schizophrenia in the Third World" that explores this issue. Among other things, he concluded that in the poor countries people with schizophrenia are less likely to be treated in a way that isolates them. They are much more likely to return to work, and work, he argues, provides its own therapeutic benefit. (His book also provides a number of citations on this topic.)

On an anecdotal level, I have talked to people who live in the northern part of Cameroon, and there -- or so I'm told -- they don't conceive of "madness" as a permanent illness or disease. They see it as more of an acute illness and thus expect that many people will recover and get on with their lives. And interestingly, whereas they recognize the benefits of Western medicine for infectious diseases, and will go to hospitals for such treatment, they prefer to go to their own medicine men, loosely known as "Curers of the Sickheads," for treatment for "madness." Traditional remedies may include herbal concoctions and various rituals for driving out the demons. But just as Warner found, what seems to be most important is that the mentally ill are not cut off from the community. They retain social roles, and the society at large is also fairly tolerant of behavior that may be strange, different, etc.

I think your question raises an obvious need. Given that the WHO twice found that outcomes are better in the developing countries, it would seem that we should be studying what they are doing so that we could learn from their success, and seek to emulate it in some manner.

Forum, Day 5

Q: What are the signs and symptoms of schizophrenia that may alert family members that this is something more than an eccentric person?

C.R.B.
Pennsylvania

Answered by Alex Beam:
I feel comfortable answering this question because I have a number of eccentricities: I often talk to myself; I sometimes greet people with the words "Woof, woof" and (VERY occasionally) answer the phone that way.

Any clinician will assure you that tics like these -- I often tap walls a few times as I pass them -- are quite harmless. They may appear at the lower end of a continuum that leads to so-called Obsessive Compulsive Disorder, or OCD. For instance, if I were unable to leave a room until I had tapped each wall three times, I would be diagnosed -- correctly -- with OCD, meaning that the tic had become a serious impairment.

And a clinician would emphasize that schizophrenia, or variations thereon, would have more serious symptoms, with much more serious consequences. Auditory or visual hallucinations, for instance, of the kinds that John Nash experienced. And, they prevented him from participating in his domestic and professional lives.

Q: Several years ago, I heard a speaker in Columbus, Ohio say that possibly 40% of those with schizophrenia may really be suffering from Celiac sprue? Has there been any confirmation of this?

Martin
Hamilton, Ohio

Answered by E. Fuller Torrey, M.D.:
Celiac disease, which is also known as sprue, is an intestinal disease leading to the malabsorption of food and subsequent diarrhea and weight loss. It is caused by an allergy to gluten in the diet and is treated by eating a gluten-free diet. In the 1980s, the late Dr. Curtis Dohan and some of his colleagues claimed that schizophrenia was related to celiac disease and should also be treated by removing gluten from the diet. Attempts to treat individuals with schizophrenia with a gluten-free diet (e.g., no milk or cereal grains) produced mixed results but were generally thought to be unsuccessful. A few patients reportedly respond to this diet or to other special diets and, in such instances, the diets should be utilized if they help ameliorate the symptoms. It may well be that a subgroup of individuals with schizophrenia have allergies to various foods that exacerbate their symptoms. Research to date, however, suggests that these subgroups are relatively small and thus are difficult to study.

Q: Do you think that the allegation contained in John Nash's story--that sheer will can defeat schizophrenia--is accurate? Further, how does this gibe with the exhortation, to consumers, to stay on their medications?

C.B.
New York, New York

Answered by Frederick J. Frese III, Ph.D.:
These questions raise an important issue. For many of us with this condition work and willpower can be very helpful. Schizophrenia is a disorder that one can learn to live with, but it takes time and experience. With more experience, those of us who are not too disabled can learn to cope and to function fairly well despite periodically experiencing symptoms. Most, particularly the more disabled of us, benefit considerably from anti-psychotic medications. But it is also clear that some of us, particularly as we become older, can function fairly well even without taking medications.

Most of us with schizophrenia, particularly those who are more disabled, are better off if we take the medications. I learned from experience that I can become very sick if I do not take medications, even though I do not consider myself as disabled as many others.

In summary, for most consumers it is best that we take medications, but there are exceptions. Some of the better known, more successful, persons with schizophrenia, such as John Nash, and Dan Fisher appear to fall into this latter group.

Q: What, if any, relationship exists between schizophrenia and bipolar disorder?

J.M.
Baltimore, Maryland

Answered by E. Fuller Torrey, M.D.:
The short answer to your question is: we really do not know. The long answer begins approximately a century ago, when most cases of both schizophrenia and bipolar disorder were simply grouped together as insanity. Then, in the 20th century, psychiatrists proposed that the two were separate diseases, which is what all textbooks teach.

Clinically, there certainly are differences between typical schizophrenia and typical bipolar disorder. The former is primarily a disorder of thinking, the latter of mood. Individuals with schizophrenia generally have a worse clinical course and are less likely to return to the level of function they enjoyed before they became sick. Furthermore, individuals with schizophrenia almost never respond to lithium treatment alone, whereas many individuals with bipolar disorder do.

This neat dichotomy becomes clouded, however, by the fact that many individuals with these disorders are not typical. There are, in fact, individuals with all admixtures of symptoms of schizophrenia and bipolar disorder; those in the middle of this clinical spectrum are called schizoaffective. Even more confusing is the fact that some individuals change clinically over time, e.g., at age 18 they have predominantly bipolar clinical features, but at age 29 they have many more symptoms of schizophrenia. Looking at antecedents of the two diseases also does not clarify things. Genetic studies have pointed to many genetic areas that seem to be involved in both diseases. Both diseases have an excess of complications of pregnancy and birth, an excess of winter and spring births, and an excess of developmental delays in childhood.

In summary, schizophrenia and bipolar disorder share many antecedents but differ in their clinical expression. Thus, they may possibly be two facets of the same underlying disease, with the clinical differences governed by the part of the brain affected. But, as I said previously, we really do not know.

Q: Why is it that many people suffering from schizophrenia seem to have delusions and paranoia about the FBI, Government conspiracies, etc.? Is there something about law enforcement that scares all of us beneath the surface?

Wayland S.
New Haven, Connecticut

Answered by Irving I. Gottesman, Ph.D.:
Delusions occur across a wide variety of psychiatric (mood disorders, abuse of alcohol, amphetamine, cocaine, etc.) and non-psychiatric ( subdural hematoma, hypoglycemia, vitamin deficiencies, etc.) conditions and are not specific to schizophrenia. An excellent overview is provided by Dr. Theo C. Manschreck in Kaplan & Sadock's Comprehensive Textbook of Psychiatry (7th edition). You ask about one particular subtype of delusion, that of persecution, which is observed across cultures in individuals who develop paranoid schizophrenia. The content of the delusions, that is, FBI or CIA, Buddha or Christ, ghosts or Satan, are products of the culture in which one is reared. It is an error for a diagnostician to try to judge what is or is not a delusion in persons from unfamiliar cultures and religions. In patients with schizophrenia, delusions are taken as the proxy for thought disorder which cannot be observed directly. Delusional disorder, formerly known as paranoia, is probably a different disorder from schizophrenia in that, unlike the latter, it is very rarely familial.

Forum, Day 6

Q: Dr. Torrey mentioned that he would have Mr. Nash submit to an MRI promptly. Would you elaborate as to the success or procedure if something is found. Also what medications have been successful for delusions or auditory hallucinations. Thank you.

A.S.
Chicago, Illinois

Answered by E. Fuller Torrey, M.D.:
For someone who has had schizophrenia for many years, an MRI is not indicated unless the person develops new neurological symptoms. However, for a person being diagnosed with schizophrenia for the first time, I believe that an MRI should be done to rule out other diseases that may cause symptoms similar to those of schizophrenia. Diseases that mimic schizophrenia and that may be detected by MRI scans include brain tumors, Huntington's disease, Wilson's disease, metachromatic leukodystrophy, sarcoidosis, subdural hematomas, Kuf's disease, viral encephalitis, and aqueductal stenosis.

Regarding the treatment of hallucinations and delusions, we now have a wide variety of less expensive, first-generation (e.g., fluphenzaine, thiothixene, haloperidol) and more expensive second-generation (e.g., clozapine, olanzapine, risperidone) anti-psychotic medication. For most people, these medications will markedly reduce or even abolish hallucinations and delusions. Unfortunately, we do not yet have any way of predicting which individual will respond to which medication, so we medicate by trial and error. A detailed description of these medications, including their side effects, can be found in my book,Surviving Schizophrenia, 4th edition.

Q: My mom was in and out of a state hospital in Pennsylvania in the 1960s. She talked about shock treatments while she was there and I remember her taking thorozine for many years. She lost a lot of her memory so she was not able to tell me much about the hospital. The name of the hospital was Retreat State Hospital. Could you tell me anything about what kind of place it was and possibly what kind of treatment my mother may have received

S.G.
Leola, Pennsylvania

Answered by Alex Beam:
I did an Internet search, and consulted the site run by a man who catalogues decommissioned hospitals (www.darkspire.org), and could not find Retreat State Hospital. I did, however, find a reference to a Pennsylvania state document turning a hospital of that name over to the Department of Corrections, implying that it is now part of the prison system.

I think that the shock treatment you describe was electric shock, because it was so common in state hospitals during the 1950s and 1960s. So-called Metrazol shock was in disuse, and I don't think insulin/coma shock was all that prevalent then. I am very sorry to hear about her memory loss, which, as you yourself may suspect, could have been induced by an excessive number of shock treatments.

Q: In an article called "Mental Illness May Be Damaging to Your Brain" (Journal of Clinical Psychiatry, July 1997), Dr. Stephen Stahl cites evidence that the long-term administration of anti-psychotic drugs may serve a "rescue role" for the patient by limiting neuronal damage caused by the acute phases of the illness: "For example, the ability of anti-psychotics to prevent future psychotic breaks appears to arrest the downhill course of schizophrenia."

Conversely, panelist Robert Whitaker has cited evidence that the continued use of anti-psychotic medications may actually be harmful to the brain, making a patient's long-term prospects worse. My question is the one that Mr. Whitaker himself posed in his USA Todayarticle: "Do the medications we use to treat schizophrenia promote long-term recovery -- or hinder it?"

David Jeffreys
State College, Pennsylvania

Answered by Robert Whitaker:
This is the question that I've explored in other forums (my book Mad in America, and the USA Today column), and there is not much I can add here to what I wrote in those places, in terms of trying to answer it. But I do believe that this is a question that we desperately need to investigate and study with an honest, open mind.

The World Health Organization twice found that outcomes in developing countries, where drugs are much less frequently used, were much better than in the U.S. and other developed countries. That is an incredible failure, and it seems to me that as we go forward we have two choices: We can ignore this failure, and simply keep on telling ourselves that we have made great progress in understanding the "biology" of schizophrenia, and how we are developing ever better medical treatments for it. Or we can try to understand this failure, and try to understand how our medical paradigm for treating schizophrenia -- constant medication for all people so diagnosed -- may have contributed to it. And if we take this second path, then hopefully we could make changes in our care that would lead to an improvement in outcomes, such that recovery rates here equalled those in India, Nigeria, and Colombia. That is a goal that I would think we would all want to achieve.

Q: What is the difference between schizophrenia and schizoaffective disorder?

S.M.
Glendale, New York

Answered by Frederick J. Frese III, Ph.D.:
Schizoaffective disorder has a rather complex set of defining elements. It is a condition where one experiences symptoms of schizophrenia such as delusions, hallucinations, disorganized speech or behavior, or negative symptoms (diminished energy, will, etc.), while, during the same time period, one experiences a major depressive, manic, or mixed episode. Further, to meet criteria, one must have a continuous disorder of at least one month and have at least a two week period where one evidences the schizophrenic symptoms without the mood component. Regardless of how long one has the condition, mood symptoms must be present for a substantial portion of the total duration of the illness.

In contrast, schizophrenia is diagnosed if these mood aspects are not present, there is a major disturbance in ability to work, in interpersonal relations or in self care, and if the condition continues for more than six months.

As a practical matter one can be diagnosed with schizoaffective disorder having had symptoms for as little as one month. A person will not be diagnosed with schizophrenia until one has been experiencing symptoms for at least six months. Also, in practice many psychiatrists and psychologists tend to consider schizoaffective disorder as a form of schizophrenia. Others, however, tend to view schizoaffective disorder as being more closely related to bipolar or other major affective disorders.

Q: Can clinical depression (CD) eventually deteriorate into a more severe and potentially more debilitating disorder (either mental, physical or both)? Is there any known treatment to completely cure CD

B.Q.
Pinesville, Florida

Answered by Irving I. Gottesman, Ph.D.:
The classification and understanding of the group of disorders where depression, or low mood, is a main feature is still unsolved. Optimal treatment depends on accurate classification. A thorough physical exam from your family physician is a good place to start to rule out an endocrine problem or other somatic causes. By using the search function at the NAMI Web page, you can look under depression, dysthymic disorder, and bipolar disorder to see the range of information available. Bereavement after a major loss in your life such as the death of a child or parent, a divorce, death of a pet, loss of your job, the impact of 9/11, all may resemble varieties of depressed mood but they usually get better with the passage of time. If not, seek professional help.

Q: My daughter, who is approaching 43, has paranoid schizophrenia, and appears to be getting worse, even on the new medications. Is this usually a degenerative disease.

Diane Moore
Marco Island, Florida

Answered by Irving I. Gottesman, Ph.D.:
The consensus appears to be that schizophrenia is not a degenerative disease, although there are hints that there is some degeneration from autopsy and brain imaging studies. The latter could just be incidental to age.

The appearance of the brain at autopsy (the absence of gliosis) tilts most experts with whom I have talked to favor a neurodevelopmental component which, in concert with genetic predispositions and environmental stressors leads some individuals to develop schizophrenia over a wide age range. Age itself is an independent source of numerous ailments which may add to the worsening of the symptoms of schizophrenia. In an earlier question I answered for this Forum, I also noted that a signficant proportion of patients improve later in life, sometimes without medication, for reasons still unknown.

Periodic medication reviews for type and dosage levels, and even second opinions, are important in the optimal management of all chronic conditions that afflict us. Enough individuals who carry a diagnosis of schizophrenia for many years will then have a manic episode to make it worth noting in the answer to your question; this suggests the presence of bipolar disorder with a necessary switch in medications and a consequent remission. I would also note that one of the consequences of an unrecognized temporal lobe epilepsy is a clinical picture that receives a diagnosis of paranoid schizophrenia; it may take a decade or more for the psychiatric symptoms to appear (see any good textbook of psychiatry).

Q: I was curious as to what would happen if a patient were misdiagnosed with schizophrenia and placed on zyprexa (olanzapine). Could the drug actually cause schizophrenic symptoms if taken for a while and then stopped? What effect does zyprexa have on a patient who is perfectly healthy. Both while they take it and when they get off of it.

Ryan Thomas
Naples, Florida

Answered by John Hsiao, M.D.:
Olanzapine is not addictive: people taking it don't develop tolerance to its effects, nor do they experience withdrawal symptoms when it is stopped. I would not expect olanzapine discontinuation, itself, to cause symptoms of schizophrenia. However, if the olanzapine was working and the person did indeed have schizophrenia (or some other type of psychosis), then, of course, once the olanzapine was discontinued, symptoms of psychosis could re-emerge. If someone who was not psychotic (i.e., not experiencing hallucinations or delusions) took olanzapine, all they should expect to experience are the side effects of the drug: dizziness on standing, sedation, dry mouth, constipation, and weight gain are the most common. These would go away when the person stopped taking olanzapine.

Q: How long does an anti-psychotic drug take to have its full effect? Should weight gain be a reason to switch from an atypical anti-psychotic to the older typical anti-psychotics?

G.K.
Sioux Falls, South Dakota

Answered by John Hsiao, M.D.:
Since both the newer and older anti-psychotic drugs cause sedation, they often have some immediate calming effects when started in someone with psychosis. The anti-psychotic effects, per se -- reduction of hallucinations and delusions -- may be seen in the first few days, but often don't become apparent until someone has taken the drug for a week or two. Many of the side effects associated with a drug (e.g., sedation, dry mouth, dizziness) become apparent immediately, and if anything, diminish with time. It may take many months for the anti-psychotic effects to develop fully, and sometimes, hallucinations and delusions merely decrease in frequency and intensity, without disappearing entirely.

Some evidence indicates that that anti-psychotic medications act to eliminate symptoms most quickly after a first episode of psychosis but that with repeated episodes it may take longer for the medications to show a full effect. This is one of the reasons why it is important to minimize the number of episodes or relapses a patient experiences. Over the short run, whether or not an individual adheres to the medication regimen prescribed by their doctor is the major determinant of whether or not they will experience an illness relapse.

Weight gain may be apparent from early on, but since it is generally gradual, it may take many months or years to become fully apparent. Weight gain might be a factor in switching from one atypical anti-psychotic to another or to one of the older anti-psychotics. The older anti-psychotics also caused weight gain, but not as often as many of the newer agents.

Q: I am so anxious to understand the link between mental illness and insulin. As a diabetic, I have experienced many insulin shocks, and in the movie, it is gruesome to watch. I can understand some of the thought behind the treatment, when I have insulin shock, I feel an emotional collapse, afterward. Sort of like going to the foundation of one's soul. How, was this treatment justified, and what, if any, realistic outcomes were experienced?

Rick Phillips
Noblesville, Indiana

Answered by John Hsiao, M.D.:
Shortly after insulin was introduced in the 1920s, Manfred Sakel, an Austrian psychiatrist, attempted to use insulin to manage morphine withdrawal. He noted that it was possible to "safely" induce hypoglycemia, and decided to try insulin therapy in patients with schizophrenia. Many patients with schizophrenia appeared to improve dramatically after a course of insulin coma therapy and the practice spread widely and quickly to other hospitals around the world. It continued to be widely used until displaced by the introduction of chlorpromazine (the first antipsychotic drug) in the 1950s. There was never any a priori justification for trying insulin coma therapy in schizophrenia, aside from the fact that nothing else worked. The treatments were associated with considerable morbidity and mortality. The long term benefits and safety of insulin coma therapy are unknown.

Q: How is schizophrenia diagnosed?

N.F.
Boston, Massachusetts

Answered by John Hsiao, M.D.:
Schizophrenia is diagnosed based on its symptoms, course of illness, and impairment. In the most recent Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR, American Psychiatric Association, Washington D.C., 2001), the diagnosis of schizophrenia requires a 1 month active period of symptoms (less if successfully treated) with two or more of the following: delusions, hallucinations, disorganized spech, disorganized or catatonic behavior, or negative symptoms (amotivation, lack of emotion, withdrawal). Including prodromal and residual periods, before and after development of active symptoms, the illness must have lasted at least six months, and be associated with significant social or occupational dysfunction. Finally, other causes of psychosis must be ruled out. In brief, schizophrenia is diagnosed when a person has severe symptoms of psychosis with marked impairment of function lasting 6 months or longer and not explainable by some other cause.

Q: At what age does schizophrenia begin?

Salil Motianey
Short Hills, New Jersey

Answered by John Hsiao, M.D.:
The median age of onset for men is in their early to mid 20's, while in women, the median age of onset is in their late 20's. Schizophrenia has been diagnosed in children but is very rare before puberty. The incidence rate drops with age, and few cases begin past the age of 40.

Participants:

Alex Beam
Journalist Alex Beam worked at Newsweek and Business Week before joining the Boston Globe. His award-winning twice-weekly column for the Globe has appeared since 1987. In addition to his journalistic work, Beam is the author of two novels about Russia, Fellow Travelers(1987) and The Russians Are Coming! (1991), both published by St. Martin's Press. His recent non-fiction book exploring the history of McLean Hospital, Gracefully Insane: The Rise and Fall of America's Premier Mental Hospital, was published in January 2002.

Laurie Flynn
On January 1, 2001, Laurie Flynn joined the Columbia University Department of Child and Adolescent Psychiatry, working to improve services for children and adolescents with serious mental disorders. For the past 16 years, Ms. Flynn has served as the executive director of NAMI (National Alliance for the Mentally Ill). NAMI is the nation's leading grassroots advocacy organization dedicated solely to improving the quality of life for people with severe mental illnesses and their families. Ms. Flynn is a member of many national advisory boards and professional association committees concerned with the care of the severely mentally ill, the quality of mental health care and family support, as well as research and ethical aspects of the treatment of mental illness. She is also the recipient of many service awards and commendations from national foundations and associations, including three from the American Psychiatric Association. Ms. Flynn is the author of articles, books, and book chapters on health services for the mentally ill and family support. She has a daughter with a serious mental illness. 

Frederick J. Frese III, Ph.D.
Dr. Frese is a psychologist with thirty years' experience in public mental health care and is presently coordinator of the Summit County Recovery Project, serving recovering consumers in the Akron area. For fifteen years, until his retirement in 1995, Fred was director of psychology at Western Reserve Psychiatric Hospital. He is also a consumer, having been diagnosed with schizophrenia as a young Marine Corps officer. Despite his disability, he was able to gain a degree from the American Graduate School of International Management in Phoenix, Arizona; and a doctorate in psychology from Ohio University. Fred founded the Community and State Hospital Section of the American Psychological Association and is past president of the National Mental Health Consumers' Association. He currently holds clinical faculty appointments in psychiatry at Case Western Reserve University and at the Northeastern Ohio Universities College of Medicine. He is first vice president of the board of directors of the National Alliance for the Mentally Ill, and is also on the board of scientific advisors for Schizophrenia Bulletin. He has authored many articles and book chapters and has lectured widely on the subject of schizophrenia.

Irving I. Gottesman, Ph.D.
Professor Gottesman currently holds an endowed chair in adult psychiatry and is a Senior Fellow in psychology at the University of Minnesota, as well as an emeritus chair in psychology at the University of Virginia. His distinguished career includes plaudits from British, Japanese and American professional associations, including the Joseph Zubin Award for lifetime contributions to psychopathology from the Society for Research in Psychopathology. W. H. Freeman published his award-winning 1991 book, Schizophrenia Genesis -- The Origins of Madness, which has been translated into Japanese and German. His more recent work focuses on psychiatric genetics and genomics. Prof. Gottesman has mentored 35 Ph.D. students, and an annual lecture on behavior and neurogenetics has been endowed in his name at Virginia.

Raquel E. Gur, M.D., Ph.D.
Dr. Gur is a professor of psychiatry, neurology and radiology at the University of Pennsylvania. Her academic career has been devoted to the study of brain function in schizophrenia. Dr. Gur has directed Penn's Neuropsychiatry Section and Schizophrenia Research Center, and has established an interdisciplinary program dedicated to advancing the understanding of the pathophysiology of this complex disorder through the application of diverse strategies, from neurobehavioral to molecular. The research has been supported by the NIMH, including a Mental Health Clinical Research Center, a MERIT Award, a Senior Scientist Award, a Conte Center for Neuroscience of Mental Disorders, and a training grant. Over the years, the research findings have been presented in professional meetings and published in leading scientific journals. This work has been carried out in large and well characterized samples of research participants, with commitment to advance knowledge while meeting patient care needs. 

John Hsiao, M.D.
Dr. Hsiao completed a residency in psychiatry at the University of North Carolina at Chapel Hill, and a residency in nuclear medicine at the National Institutes of Health (NIH) Clinical Center. After many years as a researcher in the Division of Intramural Research of the National Institute of Mental Health (NIMH), he moved to the extramural research program. He is currently chief of the Special Projects Program in the Division of Services and Intervention Research, and editor in chief of Schizophrenia Bulletin. He is Project Officer for the Clinical Antipsychotic Trials of Intervention Effectiveness (CATIE) project: two multi-site, multi-year clinical trials comparing new antipsychotics, one in schizophrenia, and the other in Alzheimer's disease. 

E. Fuller Torrey, M.D.
Dr. Torrey is the executive director of the Stanley Medical Research Institute, president of the Treatment Advocacy Center, and a professor of psychiatry at the Uniformed Services University of the Health Sciences in Bethesda, Maryland. He has authored or co-authored 18 books, including Surviving Schizophrenia: A Manual for Families, Consumers, and Providers (4th edition published in 2001) and, with co-author Judy Miller, The Invisible Plague: The Rise of Mental Illness from 1750 to the Present (Rutgers University Press, 2002).

Robert Whitaker
Journalist Robert Whitaker's articles on the mentally ill and the drug industry have won several awards, including the George Polk Award for medical writing and the National Association of Science Writers' Award for best magazine article. He was named a finalist for the Pulitzer Prize for a Boston Globe series on harmful research involving the mentally ill that he co-wrote in 1998 -- a series which led him to write Mad in America: Bad Science, Bad Medicine, and the Enduring Mistreatment of the Mentally Ill (Perseus Publishing, 2002). Whitaker lives in Cambridge, Massachusetts.