Tuesday, June 2, 2009

Dr. E. Fuller Torrey--3

How does it feel to have schizophrenia?

“Surviving Schizophrenia,” first published in 1983 and now in 5th revision, is the bible for families who have lived with someone with that particular mental illness. It defines what schizophrenia is and is not, how it is treated, what causes it, what are the courses and outcomes, what comes after, it handles questions from consumers and families, and advises on how to be an advocate. I thought it's worth rehearsing what this wonderful book has to offer, whether you're directly involved or a casual reader.
First, the book is written in a style that's clear and easy to understand without condescending to the lay reader. I find it has the best explanation of how you would tell someone what schizophrenia does to you, what it must feel like. You might be a high school kid feeling your brain is suddenly crashing in on you, or you're a parent or sibling and want to know how you manage when your close relative is going through the gyrations of an upset mind where thinking and emotions go haywire
Families are up against these wild and stressful situations and Dr. Torrey is sympathetic to all of this. We hear of so many of their tragedies and triumphs at the relatives support group meetings inside Ellis Hospital Psychiatry on a weekly basis. Some, at least, report schizophrenia in their family, while there are more reports of bipolar disorder today and a lot of cases of teenage depression and among young mothers and some old folks. Each of these illnesses come and go, flare up and die down, or stick around, so you may need to know about public mental health services here, how to obtain maintenance medicines, come in for counseling or entitlement programs, among other things. Torrey goes through those, too.
Look--when a disease like schizophrenia first strikes it's terribly distressing because no one knows what to do. There are weeks and months of waiting to see if symptoms are confirmed, to see if medicines work, to find if the individual can get back on his feet and recapture his life. Young people who are resilient enough usually can go back to their jobs, drive a car and look after family responsibilities. But some will be hit harder. Every semester, it seems, a young man or woman drops out of a local college and is hospitalized. Will he or she go back to school? Some do.
Torrey's book is particularly helpful to young people, first time sufferers.
Some of us have gone in as a team to the high schools in this area to talk to students in health classes and read passages from Surviving Schizophrenia. The idea is to tell them these diseases strike young people their age or a little older, it's a no-fault brain disease, and you can get help. You should tell your parents and school counselor if you're feeling the symptoms. There is medical treatment in the community.
How must it feel? Torrey explains that it can have devastating consequences:
In an early chapter, he writes: “Sympathy for those afflicted with schizophrenia is sparse because it is difficult to put oneself in the place of the sufferer. The whole disease process is mysterious, foreign, and frightening to most people. It is not like a flood,where one can imagine all one's possessions being washed away. Nor like a cancer, where one can imagine a slowly growing tumor, relentlessly spreading from organ to organ and squeezing life from the body. No. Schizophrenia is madness. Those who are afflicted act bizarrely, say strange things, withdraw from us, and may even try to hurt us. They are no longer the same person—they are mad!”
“Those of us who have not had this disease should ask ourselves, for example, how we would feel if our brain began playing tricks on us, if unseen voices shouted at us, if we lost the capacity to feel emotions, and if we lost the ability to reason logically. This would certainly be burden enough for any human being to have to bear. But what if, in addition to this, those closest to us began to avoid us or ignore us, to pretend that they didn't hear our comments, to pretend that they didn't notice what we did? How would we feel if those we most cared about were embarrassed by our behavior each day?” Torrey asks.
We tell the kids they shouldn't make fun of others they see acting odd in class because it's not the individual's fault. We say treatment works most of the time for most people.
Torrey goes on to explain the symptoms of schizophrenia, citing the hallmarks of hallucinations and delusions and the difficulty sufferers face in interpreting and responding to auditory and visual stimuli. Someone may have difficulty concentrating on schoolwork or even watching TV. He or she may withdraw from friends, sports and school activities and change their personality.
In regard to treatment and the impact of the illness on society, Torrey picks a fight with many of his colleagues. He argues that schizophrenia has to be treated with medicine, not talk therapy, and those unable to be treated successfully must be put aside from society (hospitalized or segregated). Those opposed to this view, he believes, are creating the dangerous situations that lead to innocent people being harmed or killed, including the sufferers themselves.
Torrey takes a whack in his book at the lack of involuntary treatment laws that would take the most vulnerable patients off the streets, those at risk of hurting themselves or others. Stubborn laws prevent these sufferers from obtaining the treatment they need, he writes. (NYS has Kendra's Law, a model for the states and a brainchild of Fuller Torrey's.)
He is ever alert to the realities of mental health services in poor communities and among minorities. He is appalled at the tragedies of the homeless and untreated mentally ill who show up in emergency rooms and jails and prisons. We are urged to act more aggressively in our advocacy to get better mental health housing, treatment and support services for this population.
And he recognizes how powerful the stigma against mental illness is for families and individual sufferers. He's devoted to erasing that.
(For more information about NAMI locally and at state and national levels, call our phone number listed on the website. And be well.) (Roy Neville)

Monday, June 1, 2009

Dr. E. Fuller Torrey--2

NAMI's top advocate takes them all on

Meet E. Fuller Torrey, the heart and soul of the NAMI family movement and a world class advocate committed to eradicating schizophrenia,
Some call him flamboyant, dogmatic, shrill. He has always walked the straight and narrow in seeking recovery of severely mentally ill persons. He espouses the medical model of care and he will fight anyone, particularly the radical mental health consumers, who defies his belief that someone who can't live safely in society should be hospitalized or given priority for outpatient services.
That's his main calling as an advocate, I feel. As a researcher he can go into brains and he can claim there's a cat virus that may cause schizophrenia but from his political pulpit he mainly wants untreated mentally ill people taken legally into custody and not let loose on our streets. And he wants state laws changed to make this readily available.
Back in the 1950s his sister came down with schizophrenia as she was about to enter college. Dr. Torrey was aghast at the fake theories then prevalent about mental illness, inspired by the Freudians. He didn't believe that schizophrenia was a product of poor parenting nor that their mother was to blame. He never forgot his sister and has continued to visit her in Utica where she resides in a state hospital today. His sister's illness started him on a career in research into schizophrenia and on the way, he emerged as a leading advocate for the families of sufferers with mental illness.
Dr. Torrey is known as quiet and refined in private. But up front at the NAMI meetings he acts like a tiger (or wolf). I'm reminded of the times we saw Dr. Torrey in Washington and other cities. At one of these a few years ago we sat in a crowd of about 100 waiting for Fuller to appear. We all donned white tee shirts with a black wolf's emblem on the front. When he came down the aisle we howled and moaned like werewolves for a few delirious moments. He told us up front we have to fight harder, attack like wolves, if we're ever to change backward government policies toward the mentally ill. We greedily growled our applause.
Along the way there are a lot of other things he wants. He argues vehemently for a sufficient mix of community mental health services, including assertive community treatment, clubhouses, supported housing and supported employment, emphasizing illness and medication compliance throughout (see Wikipedia article on Torrey).
Many of us in NAMI follow the same lines, honor Fuller Torrey, but have learned something of his penchant for adoration and his snippiness toward dissenters. Despite a fruitful career, Fuller Torrey has a mixed reputation. Unless I'm mistaken, he's thought to be somewhat of a gadfly in the political arena.
In his time he's taken them all on, friend and foe:
--The NAMI crowd separated themselves from Fuller Torrey several years ago because of his reputation for disagreeing with others, particularly on the consumer issues. So he set up the Treatment Advocacy Coalition to take a harder line advocating changes in state laws that would force states to offer at least some limited form of involuntary hospital treatment (like our state's Kendra's Law). He called out NAMI leaders last year for backing the findings of a national study that supported some second generation medicines for schizophrenia, claiming they were reluctant to oppose drug companies who donated money amounting to more than half of NAMI's budget. He did accept an award from NAMI at the 2007 national conference.
--He has opponents among his old research colleagues who think he's all wet with his cat virus theory.
--He has urged Congress to put the National Institute of Mental Health (NIMH) back into the National Institutes of Health (NIH) which receive far more research dollars and have more political clout. And he's embarrassed top dogs at the NIMH, where Torrey worked, and Center for Mental Health Services (CMS), whom he charged with having a 1960s hippie mentality against medicine. He complains the CMS has wasted money on studies of pigeons' sex lives, for example, and paid for anti-psychiatry groups, while not focusing on severe mental illness.
--He thinks the states, not the federal government, should be where mental health policy is centered. But recently, and pointedly at NY State, he contends the Office of Mental Health has done too little and should be folded into the state Department of Health, which administers most of the spending anyway through Medicaid.
--A few years ago while on the board of directors of the prestigious Sheppard Pratt Hospital in Maryland, he is alleged to have prevented another researcher from joining the hospital staff because of their opposing views on the rights of mentally ill people to refuse treatment.
--Dr. Torrey is most furious about restrictive state laws, the result of federal court rulings in the 1970s and later, that prevent seriously mentally ill people from being admitted to hospitals or clinics for mental health treatment. These civil rights laws have sparked controversy around the nation and prompted Torrey to found the Treatment Advocacy Coalition about 10 years ago. TAC has advocated for states to pass assisted outpatient treatment laws, which give priority for someone acting out disruptively in the community to receive at least clinic treatment and medicines. In NY State this is known as Kendra's Law, passed in 2001 and a model for the rest of the states. Opposition still exists to these laws because they can legally force someone into treatment. When two mentally ill men were shot by police last year in NY City, Torrey penned an article in the NY Post headlined: “Deadly Madmen--Mental Health System Still Lets Them Roam.”
--He has harshly criticized state mental health officials for lack of community mental health services, including mental health courts and diversion from jail, police crisis intervention teams, drug courts, and shortages of housing and psychiatric beds available in emergencies. He blames today's epidemic of homelessness, violence and medication noncompliance among the mentally ill on the failures of governmental leadership. He finds that most of the violence occurs among those not in treatment.
--Torrey has also tilted over the years with the anti-psychiatry crowd including psychiatrists like Thomas Szasz, who think schizophrenia isn't a real illness, and with the neo-Freudians, whom he exposed in his book The Freudian Fraud.
The good doctor with the illustrious career is so thoroughly devoted to causes the families hold dearest, it's too bad we don't revere him more, instead of picking at his failings. (Roy Neville)

Dr. E. Fuller Torrey--1

The cat virus theory of schizophrenia

Dr. E. Fuller Torrey is the guru of the NAMI family movement. Over the past 50 years he has investigated mental illness, researched the causes, worked on the wards at St. Elizabeth's, worked for the National Institute of Mental Health, run the Stanley Medical Research Institute in Bethesda, Md., where they do brain studies, founded the Treatment Advocacy Coalition (TAC), which advocates for states to change outpatient treatment laws, all the while speaking out and writing books and articles at every opportunity. Many see him as the most provocative and accomplished psychiatrist in America.
He does all that with a passion and personality that gets him both high praise and in a lot of hot water with his allies and coworkers, his friends and supporters, and his bosses in top circles in government.
So we have a controversial genius moving on his own mad track to discover the connections of infectious agents with schizophrenia and bipolar disorder--the severest and most exasperatingly hard to understand of the brain disorders we call mental illnesses. And he's our man.
Here is a short recital of some themes in his research focus. (Learn more from Wikipedia—the internet encyclopedia; also from an interview with Fuller Torrey on SchizophreniaConnection.com (August 26, 2007); an article in NY Times Magazine, Feb . 22, 1998; and an article in Stanford Magazine called Brain Storm, Jan-Feb. 2003.
You can pick up almost anywhere with Dr. Torrey's amazing history. First, his fascination with the cat theory, a zany idea both for those who might own a cat and not have the illness and for those who have the illness and don't own a cat:

The cat virus connection
Fuller Torrey thinks viruses spread schizophrenia and bipolar disorder; specifically a domestic cat parasite called toxoplasma gondii. As reported, he says: “We've done two studies on exposure to cats in childhood of people who have schizophrenia and it was increased. We now have 46 studies that have been done looking at antibodies against toxoplasma gondii in individuals with schizophrenia and they (antibodies) are clearly increased. If we're right on this, we are guessing that the transmission takes place probably early in childhood.”
The cat parasite can lead to toxoplasmosis. Up to one-third of the world's population is estimated to carry a toxoplasma infection. Torrey and coworker Robert Yolken publish studies on seasonal variation with the infections. They're even using toxoplasmosa gondii agents (antibiotics) as an add-on treatment for schizophrenia. He believes that infectious agents will eventually explain “the vast majority” of schizophrenia cases. Has anybody heard of that? Is anybody interested?
“We've not proven it yet, so you should not go home and kill your cat,” Torrey says. “And if you are over the age of 30 and you have a nice cat, that's fine. On the other hand, if you want to minimize any chances in your children, then getting a cat for a young child is probably not the right thing to do.” (Opponents say he's off base. See Wikipedia article on Fuller Torrey for this discussion)

The brains delivered by Fed Ex
Fuller Torrey collects brains at the Stanley Medical Institute in Washington, which he heads. His team receives postmortem brains often on weekdays via Fed Ex for their brain bank, the largest in the world. He now has over 600 brains in his collection which Torrey calls “first-rate, brains of people younger and not dead long,” the kind of brains that “would be full of unaltered proteins and neurotransmitters, viruses and cytokines that might hold the answers to schizophrenia's cause. The only schizophrenic brains available before this have been very old and not in very good shape. They came from hospitals and nursing homes, from patients so elderly that by the time they died the brain had atrophied.”
Torrey gets the brains donated from medical examiners offices and “has built a national network that collects brains of mentally ill people who have died in their 20s, 30s and 40s, from suicide and heart failure, in car crashes and fires.” He employs several pathologists around the country to work hunting brains. The frozen brains are shipped to his lab, where, he says, “we have 44 freezers just full of brain.” While he uses some himself, he ships most of them free to researchers world wide. (See the NY Times piece mentioned above about this)
At the Stanley lab, the brain tissues are scrutinized by a team of researchers to identify cell damage that may point to viral infection. They are also searching for antibodies in brain cells and for chemical substances released when the body fights infections. The team hopes that finding the viral culprits could lead to effective new drugs and perhaps even a vaccine for schizophrenia. These studies are not conclusive. (See Stanford Magazine article cited above)

Torrey's twin studies
Fuller Torrey was principal investigator of a NIMH schizophrenia/bipolar disorder twin study conducted at St. Elizabeth's Hospital in the late 1980s and early 1990s. He co-published several studies on structural brain differences between affected and unaffected siblings. He differed from his collaborators in arguing that the genetic heritability of schizophrenia was lower than typically estimated. Disagreements followed with those reviewing his data. (see Wikipedia article)
Some of us in NAMI were first attracted to Dr. Torrey by his twin studies, which seemed to set the odds for inheritance of schizophrenia. He wrote in Surviving Schizophrenia (1995) that his study of identical twins shows that when one twin develops schizophrenia, the second twin has about a 30 percent chance of also becoming affected. Among fraternal twins the chance of the second twin becoming affected is about 10 percent, the same as for brothers and sisters.
While genes play some role in the development of schizophrenia, Torrey remarks, there is much debate about what that role may be. “If schizophrenia is truly a genetically transmitted disease, it does not fit existing dominant or recessive patterns. It is also difficult to understand why the disease has not died out since people with schizophrenia reproduce at an extremely low rate. Furthermore, first-cousin marriages or other inbreeding do not seem to affect the rate; the incidence of schizophrenia is not higher in areas where such inbreeding is higher. Finally, it should be remembered that only about one-third of individuals with schizophrenia have a family history of this disease, which means that two-thirds do not.” (See Surviving Schizophrenia, page 156).
Hence, we might understand Torrey's continued fascination with viruses, more than genes, as causes of schizophrenia, even if the findings are less conclusive. (Roy Neville)