Noteworthy News Articles on Mental Health Topics, March 22-25, 2008 Marcus Wohlson, Associated Press- 3/22/2008 SAN DIEGO -- Dr. John Kelsoe has spent his career trying to identify the biological roots of bipolar disorder. In December, he announced he had discovered several gene mutations closely tied to the disease, also known as manic depression. Then Kelsoe, a prominent psychiatric geneticist at the University of California, San Diego, did something provocative for the buttoned-down world of academic medical research: He began selling bipolar genetic tests straight to the public over the Internet last month for $399. His company, La Jolla-based Psynomics, joins a legion of startups racing to exploit the boom in research connecting genetic variations to a host of health conditions. More than 1,000 at-home gene tests have burst onto the market in the past few years. The proliferation of these tests troubles many public health officials, medical ethicists and doctors. The tests receive almost no government oversight, even though many of them are being sold as tools for making serious medical decisions. Health experts worry that many of these products are built on thin data and are preying on individuals' deepest anxieties. ''People are always rushing to the market on the basis of one or two studies,'' said Dr. Muin Khoury, director of the National Office of Public Health Genomics at the Centers for Disease Control and Prevention. ''We have very little evidence that telling people their genetic information is going to make any difference.'' Tests have become available claiming to help predict and diagnose everything from serious illnesses like cancer and Alzheimer's to athletic ability and a person's ideal diet. Psynomics' offering is one of the first psychiatric gene tests on the market. Kelsoe, 52, acknowledges that bipolar disorder probably results from a combination of genetic factors and life experiences, and that the presence of these gene variations does not at all mean that someone will, in fact, develop the disease. He admits, too, that his findings about the genetic basis of the illness are far from complete. But he said his test is a vital starting point toward moving away from the notoriously tricky practice of diagnosing bipolar disorder based purely on a person's behavior. ''The goal of this is to try and help doctors make an accurate diagnosis more quickly so the patient can be treated appropriately,'' Kelsoe said. ''Anything is going to help, even if it just helps a little bit.'' Bipolar sufferers experience intense mood swings as they cycle between manic, sometimes delusional highs and depressive lows that can lead to suicide if untreated. The disease is often misdiagnosed as other forms of depression, which delays treatment and can result in the prescribing of antidepressants that make some patients' symptoms worse. To take the test, patients receive by mail a plastic cup that they spit into, seal and send back to Psynomics. The company analyzes DNA in the saliva. Psynomics will send patients' test results only to their doctors to avoid the risk of self-diagnosis. The report that accompanies those results instructs doctors that a positive test means patients are two to three times more likely to have bipolar disorder. But the studies from which those figures come also show the gene variations themselves are rare even among those with bipolar. The report also points out that for now, the test is valid only for whites of Northern European ancestry who show some behavioral symptoms and have at least one other bipolar family member. Patients taking Psynomics' bipolar test may feel branded by a positive result, even if they are not ultimately diagnosed with the disorder, said Hank Greely, a professor of law and genetics with the Stanford Center for Biomedical Ethics. Or they may feel false hope from a negative result, despite the company's disclaimers. Likewise, doctors have little training beyond what companies tell them when it comes to applying the test results. ''They may make a foolish decision that backfires to put you on meds,'' Greely said. ''Or they may make a decision that backfires not to put you on meds.'' Unlike many tests for other conditions on the market, Psynomics does not claim its bipolar test can predict a person's risk of developing the disorder later in life. It is meant to be used as a purely diagnostic tool for patients already showing symptoms. That is an important distinction that makes the Psynomics test more responsible than others that promise a glimpse into the genetic crystal ball, according to Dr. Greg Feero, head of genomic health care at the National Human Genome Research Institute. ''Now you're talking about an individual who has symptoms or signs that already put them in a very different risk category than someone who has no symptoms or signs,'' Feero said. Among hundreds of families Kelsoe has studied, one of the gene variations in the Psynomics test showed up in 1 percent of those unaffected by the disorder versus 3 percent who are affected. The other variation appeared in 7 percent of those without bipolar compared to 15 percent who have the disease. Many other genes interacting with a patient's environment contribute to the development of bipolar disorder, Kelsoe and other researchers believe, meaning no single genetic variation ultimately causes the disease. Researchers in Kelsoe's lab are working to track down more genes. ''Why are we starting before it's finished? You've got to start somewhere,'' Kelsoe said. ''Even if we knew everything about the genes, which we certainly don't, it's never going to be 100 percent predictive.'' Psynomics has sold only a few tests so far but is projecting sales of 1,800 tests in 2008 and 30,000 in the next five years. In coming months, at least two other startups led by genetic researchers are set to release their own psychiatric genetic tests. One test claims to predict the risk of developing schizophrenia. The other is designed to forecast the likelihood that some medications for major depression could heighten suicidal thoughts in patients. The American Psychiatric Association has yet to create an official policy on genetic testing. A fact sheet issued by the Federal Trade Commission advises consumers to be wary of assertions made by at-home genetic testing companies. The Food and Drug Administration does not evaluate the tests for accuracy, though a panel is working on a set of standards for the growing industry. For now, worry persists that with the proliferation of tests, there is too little understanding of what to do with the results, or what they mean. ''We just don't know how people will use the information,'' said Dr. Jinger Hoop, a professor of psychiatric genetics and medical ethics at the Medical College of Wisconsin in Milwaukee. ''We don't know whether it will be helpful to them in the long run.'' On the Net: Psynomics: http://www.psynomics.comQuality Time Seems Stacked In Favor of Firstborns Donna St. George, Washington Post- 3/22/2008 When her eldest child was in kindergarten, Laura Haggerty-Lacalle sat down with her every day to review reading or math, intent on providing that most precious commodity of all: parent time. "Oh my God, it's the most important thing you can do," she said. But when her second child hit the same age, life was more hectic. Now, with a third child, Haggerty-Lacalle, 37, feels good when she gets five minutes to stack blocks or build Legos in her Oak Hill home. "When you have three kids," she says, "you're just trying to survive." Within this familiar progression of family life, new research has confirmed what some parents recognize and others quietly fear: Their firstborn children get more of their time than others in the family -- on average, 3,000 extra "quality" hours from ages 4 to 13, when sisters and brothers are in the picture. That's 25 extra minutes a day with mothers on average and 20 extra minutes a day with fathers across a nine-year span of childhood, according to a study by economist Joseph Price of Brigham Young University. Some parents find themselves surprised by the lopsided time log, but the big question, experts say, is whether this difference helps explain findings that show firstborn children get better test scores, more education and higher-paying jobs. "I certainly think it advances our understanding," said Sandra Black, an economist at the University of California at Los Angeles, who has studied birth order and achievement. Although the reasons for firstborns' success have not been fully explored, she said, the study provides one plausible explanation. Based on federal data from more than 15,000 children whose days were detailed as part of the American Time Use Survey, the study defines quality time with parents as minutes spent together on such activities as homework, meals, reading, playtime, sports, teaching, arts, religion and conversation. In all categories, firstborns got more, according to the study, published in the Journal of Human Resources. This was not because of any lack of fair-mindedness, Price said, but rather because of an underlying fact of family life: Parents generally spend equal time with their children on any given day, but they spend less time with their children as the family ages. For example, mothers in two-child families spend 136 minutes a day with their firstborns at age 7. But by the time the secondborn reaches that age, mothers spend 114 minutes. These daily differences become a wide gap as the years pass. "I think if you told parents that they spend more time with their firstborn, some might say, 'Okay,' but many would be shocked because there is this feeling that you treat your children equally," said sociologist Suzanne Bianchi of the University of Maryland. Parents often do not recognize the imbalance, Price said, because day-to-day they are fairly equal about their time. "On any given day, you're more likely to spend a little more time with the second child," he said. "But it's still not nearly as much time as you spent with the firstborn when he was that same age." Many parents said the time gap was not true for their families. To others, the findings fall in line with the rhythms of family life. Their firstborns led the way in family choices about schools, sports, music lessons and family rules. Every milestone was new. "The first one has the most profound impact on the parents because you don't have a clue what you're doing," said Dia Michels, 49, a D.C. mother of three, who recalled that her eldest daughter's gymnastics classes once set the schedule for the whole family. Younger siblings went along for the ride, and dinners were rearranged. In Manassas, Kristen Kiefer, 34, a mother of two, said she recognizes that her firstborn, Madeline, 5, "is driving the bus right now about where we're going and when," with soccer, play dates and birthday parties. Still, Kiefer said, she is deliberate about making time for her 20-month-old son, Aidan. Recently, this came up as Kiefer planned a trip for the family. Her son adores Elmo, but her daughter says she has outgrown the furry red Sesame Street character. "I decided that, like it or not, we're taking the baby to Sesame Place while he still enjoys it," Kiefer said. Sometimes, she said, she wonders whether her secondborn gets short shrift. "I go to bed at night thinking, 'I didn't do enough of this for this kid or enough of that for that kid.' " In the end, she said, "the reality is, with two working parents and two kids . . . you just never feel like there's enough time." In Bowie, Damon Kyler, 42, a father of three, noted that the time gap might happen in part because younger children in the family often seek out their older siblings, not their parents. But 3,000 more hours to the firstborn? "It did surprise me that it was so drastic," he said. During his research, Price said, he discovered the firstborn time gap almost by accident, as he was poring over data on parent-child time, focused on a different topic. "The results were completely surprising and caused a lot of reflection for me as a parent," he said. In two-child families, firstborn children got about 30 percent more quality time from their parents. Birth-order differences were largest in activities Price considered most important, such as reading and playing together. Secondborns prevailed in one category: watching television with parents. Price did not count this as quality time. Why parents spend less time with children as a family ages was not studied, but Price offered some reasons, including fatigue, age and a waning novelty. In his family, he recalled, the firstborn had an elaborate scrapbook right away, but the scrapbook for his fourth child, 14 months old, has not been started. Price also pointed out that parents are more involved in driving their children to activities as the firstborn gets older, and driving was not counted as quality time. How much the eldest benefits from being a family's first might not be as certain as experts assume, said Sally MacKenzie, 53, a Rockville mother of four sons who sent her youngest to college in the fall. MacKenzie recalled the words of a relative, who once told her: "Firstborns are the ones you practice on, and it shows." As a group, she said, firstborns might be more successful by some measures, but "I don't know if that means they're happier or more neurotic." Lauren Alexander, 38, a mother of two in Cheverly, also noted fairness is not always measured by the numbers. "You can have fair treatment across all of your children, and it may not come in the form of equal time," she said, comparing it to husbands and wives who might not share each chore equally, "but in the end, it's probably fair." Despite the time gap, later-born children have advantages, too, Price said. On average, they are raised when families have higher incomes and larger homes; more attend private schools. "The secondborn gets to experience a better life in terms of money, but the firstborn gets more time," Price said. In Oak Hill, Haggerty-Lacalle said that her family is dedicated to reading time before bed and that her husband, Joaquin, takes the older two children on hikes every weekend. Lately, she has tried to involve her youngest, 2, as she does household must-dos, such as laundry. It might not be the kind of attention she once gave her firstborn, but her youngest enjoys the task. "It's not just quality time," Haggerty-Lacalle said. "It's quantity." Sleep Deprived Pay the Price Shari Roan, Los Angeles Times- 3/23/2008 At 6 a.m., the hospital's bright hallway lights flicker on, signaling the start of a new day. Doctors in crisp business clothes appear on their early-morning rounds, and the clang of breakfast carts will soon echo through the unit. For registered nurse Liberty Bunag, however, it's finally time to go home and sleep. She began her shift 12 hours ago with an extra-large coffee and since has consumed a liter of caffeinated soda, more coffee and lots of rice, her personal energy food. Sometimes she and the other nurses on the orthopedic ward of White Memorial Medical Center in Los Angeles practice foreign languages to stay alert, squelching the yawns and drowsiness -- the body's way of protesting this nocturnal activity. Bunag's head throbs as she walks to her car. "When I get home," says the 26-year-old from Torrance, "my body is tired and my mind is exhausted." In a 24/7 world, such fatigue passes for normal. Twenty percent of American workers are night-shift workers, and the number is growing by about 3% per year, according to the Bureau of Labor Statistics. While the rest of society sleeps, police officers, security guards, truck drivers, office cleaning crews, hotel desk clerks, nurses, pilots and many others keep patients alive, streets safe and packages moving. But at a price. These workers -- and people with more conventionally sleep-deprived lifestyles -- are known to be at higher risk for accidents, sleep disorders and psychological stress due to daytime demands, such as family and other obligations, that interfere with sleeping. Now scientific evidence suggests their disrupted circadian rhythms may also cause a kind of biological revolt, raising their likelihood of obesity, cancer, reproductive health problems, mental illness and gastrointestinal disorders. The evidence for an increased cancer risk is so compelling that, in December, the International Agency for Research on Cancer, a unit of the World Health Organization, declared that shift work is "probably carcinogenic to humans." Researchers are beginning to understand why. Among the most significant -- and startling -- reasons: As much as 15% of human genes function on a schedule, with highly regulated, oscillating patterns of activity. These clocklike genes are common features of most cells and can be found in every major organ in the body. They, in turn, affect the schedule of scores of biological functions, from metabolism to cell division to cognitive processes. "Less than 10 years ago, it was thought that sleep was for the brain and not for the rest of the body, so lack of sleep would make you tired, moody and more likely to have accidents," says sleep researcher Eve Van Cauter, a professor of medicine at the University of Chicago. "But sleep deprivation may be bad for the body too, representing a risk for a variety of abnormal conditions." Evolution supports that theory. Life on Earth began with single-cell organisms that depended on sunlight for converting energy to food. "Life has been adapting to a light-dark cycle since the beginning of the planet," says Paolo Sassone-Corsi, chairman of the department of pharmacology at UC Irvine. But modern humans wrongly think they can override their natural sleep patterns with impunity, says Dr. Charles Czeisler, director of the division of sleep medicine at Harvard Medical School. "It's a myth that we alone, among all animals, have the power to sleep when we want," he says. Disrupted rhythms Dennis Corrigan sometimes questions his decision to switch to a night shift 12 years ago. By working nights, the UPS truck driver from West Covina, age 52, avoids the physical demands of the day shift, when lifting boxes is part of the job, plus the worst of L.A. traffic. The 10:45 p.m.-to-11 a.m. shift also allowed him to attend all of his son's high-school football games. But Corrigan now sleeps only about six hours a day. He has put on weight and gets less exercise than before the switch and was diagnosed with diabetes five years ago. "The rough part is, when I come home, I'm hungry," he says. "I eat a heavy meal before going off to bed. You're not supposed to do that. It's a worry." His circadian rhythms may be to blame. Those rhythms determine when certain body processes take place. For example, melatonin, the hormone that aids sleep, is released at night; the hormone cortisol is low at night and pours out in the morning, jump-starting the body's daytime functions. But in night workers, melatonin continues to peak at night -- even though they're awake -- and cortisol levels continue to peak in the early morning hours, even when night-shift workers are eager to get some sleep. Those disrupted circadian rhythms are why night-shift workers sleep less and with poorer quality, Van Cauter says: They try to sleep when their bodies want to be awake. Chronic sleep deprivation may carry some of the same risks as disrupted circadian rhythms, she says. Today, Americans average about one hour less of sleep per night than they did 30 years ago. Bunag feels the effect of night-shift work on her days off. If she tries to sleep at night, she often wakes around 3 a.m. and is alert until dawn, when she falls back to sleep, often for 10 hours. On work days, she sleeps about six hours during the day but still awakens tired. "My problem is not while working but on my days off," she says. "I feel unproductive because all I do is sleep all day, and I'm up the whole night when nothing much can get done." She finds herself less willing to socialize these days and worries that her irritability may border on depression. She also wonders about the long-term health consequences of her schedule. "I want to be able to sleep normally at night when the body does all of its detoxifying, cleansing, repairing and recharging. But I haven't figured out what's going to work for me." Her concerns are well-founded. * Night-shift workers have a 40% to 50% increased risk of heart disease compared with day workers, various studies have found. * People who get five hours of sleep, common among night-shift workers, are 50% more likely to be obese than normal sleepers, Columbia University researchers have found. Several dozen other studies have tied sleep loss to weight gain as well. * Women night-shift workers have higher rates of miscarriage, pre-term birth and low birth-weight babies. * Night-shift workers show increased rates of breast (by 50%) and colon (by 35%) cancer in numerous, independent studies. And animal studies have shown that exposure to dim light during the night-time can substantially increase tumor development. "It's been known for years that there is an increased risk of a variety of medical conditions in the population of shift workers," says Dr. Diane Boivin, associate professor of psychiatry and director of the Centre for Study and Treatment of Circadian Rhythms at Douglas Mental Health University Institute in Montreal. "What is difficult to parcel out is the exact contribution of this circadian misalignment and sleep deprivation. We think it's major, but it's very difficult to be sure." Genes that keep time Science is inching closer to understanding how a lack of sleep -- or sleep at the wrong time -- can wreak biological havoc. In the last few years, researchers have made surprising discoveries about the body's sophisticated time-keeping. Scientists once assumed the body's sole "clock" was nestled in a place in the brain called the suprachiasmatic nucleus, or SCN. Light -- particularly sunlight -- is the primary synchronizer for circadian rhythms. When we open our eyes each morning, light reaches photoreceptors in the retina and creates signals that travel to the SCN to jump-start the body's hormones, neurotransmitters, temperature and metabolism for the new day. But that's not the body's only timepiece. Circadian time-keeping genes can be found in organs all over the body. These peripheral clocks control the activity of many cellular processes and biological functions, and their presence may explain why sleep dysfunction seems to have such a broad effect on overall health. Light sets the circadian clocks in the SCN, but scientists still aren't sure what compels the body's peripheral clocks to work in unison. After all, the liver and the digestive tract don't have direct access to sunlight. "The SCN is like a musical conductor and the peripheral clocks are the instruments that need to play their music with peak activity at certain times of the day to get good harmony across the body," Boivin says. "They must be in sync." The SCN somehow "talks" to these peripheral clocks by using hormones or other messengers, Van Cauter says. For example, among its many functions, the nighttime release of hormone melatonin is thought to inhibit tumor growth. Melatonin production usually peaks in the middle of the night. But it stops being secreted when light reaches the eye in the morning -- or when a light is switched on during the night. This disruption could influence the genes involved in tumor development, Sassone-Corsi says, and provide a possible explanation for why cancer rates appear higher in shift workers. How food can play a part Food intake can also affect body clocks -- and vice versa. The movement of glucose and nutrients through the bloodstream to organs affects appetite, digestion and metabolism. Travelers frequently encounter stomach and digestive difficulties when crossing time zones, for example, because food intake is in conflict with the time-keeping molecules in the body's digestive system. "When you're a shift worker and displace your sleep, you also displace your feeding schedule," Van Cauter says. The liver, pancreas and digestive system are not expecting food at the time that they're getting it. Sleep schedules that buck the body's natural circadian rhythms can disrupt insulin production and other hormones that are important to weight control, Van Cauter says. In a series of studies, she found that sleep-deprived adults produce more ghrelin, a hormone that promotes hunger, and less leptin, a hormone that suppresses appetite. Thus, the brains of tired people are sending out compelling messages to eat -- especially foods that are starchy, sweet and high-carb.Accordingly, people who sleep less may have more trouble keeping their blood sugar stable. In one of Van Cauter's studies, healthy young men were restricted to four hours of sleep per night for six consecutive nights and were found to have blood test results for insulin sensitivity so abnormal they almost matched those of diabetics. Other research is exploring effects of sleep and shift work on neurotransmitters called orexins. These brain chemicals have unique, dual roles, making sure humans are alert when hungry to maximize food-seeking behavior. After a big meal, fast-rising glucose levels in the body switch off orexin neurons, often making people feel sleepy -- possibly an evolutionary response signaling humans to conserve energy after eating. "There is wiring in our brains that links feeding and being awake," Van Cauter says. Thus, eating at midnight and sleeping at noon could lay the groundwork for the obesity, diabetes and heart disease seen more commonly in night workers. Moreover, as people age, they spend less time each night in phases of deep sleep. Van Cauter's research team is investigating whether this poorer-quality sleep may contribute to a variety of ailments in old age. Preventing the damage For people such as Bunag and Corrigan -- and for society as a whole -- night-shift work is a reality. "Our entire transportation infrastructure would break down if those trucks decided to use the roads during the day," Harvard's Czeisler says. That's why, ultimately, scientists want to prevent the damage from shift work or insufficient sleep. It's not easy, however, to tease apart the biological effect of disrupted circadian rhythms from other factors that may influence night-shift workers' health, such as poor diets, stress and lack of exercise. Many diseases, such as cancer and heart disease, are also influenced by risk factors that have nothing to do with occupation. Moreover, individuals differ in how they cope with circadian rhythm disruption. As many as 10% adapt well, but 15% to 20% simply can't tolerate staying awake all night, according to Czeisler. The remainder cope, but with difficulty. Sleep researchers have devised compensation tactics, such as the use of bright lights and melatonin supplements, to help night-shift workers remain alert on the job and sleep better after the shift. But the research on the body's molecular clocks may lead the way to better therapies, Sassone-Corsi says. Identifying the molecular clocks that affect cell division, for example, may point the way to treatments to prevent cancer. In a paper published in December in the journal Nature, Sassone-Corsi found that a single amino acid activates the genes that regulate circadian rhythms. This chemical switch could perhaps be manipulated by a medication of some sort to restore circadian rhythms that have gone awry. "If we can explain how these molecules work, we can get targets" for potential therapies, he says. "We cannot beat the system, but we can work on it." For now, however, researchers and sleep doctors alike implore people to show a little respect for slumber. "People think of sleep as a waste of time," Sassone-Corsi says. "But it's essential. A correct sleep-wake cycle is as important to health as any other thing in our lives." A Season of Song, Dance and Autism Hugh Hart, New York Times- 3/23/2008 On a recent afternoon Elaine Hall, a petite acting coach, sat on the floor of the bare-bones rec room at Vista Del Mar Child and Family Services and guided a half-dozen kids with autism through a finger-pointing, call-and-response game called Zip Zap. Then came a group singalong as the children crooned “Our circle is ready to start/Come share ideas, come share your heart” over and over. Before long Josh, Zoey, Shira and their friends were bunny-hopping across the room and improvising wild solo jigs to giddy applause. This is the Miracle Project, subject of the documentary “Autism: The Musical,” which has its debut Tuesday on HBO. It chronicles the 2005-6 incarnation of Ms. Hall’s program by tracking a rambunctious cast of children with autism — and their parents — as they prepare to put on a show. The documentary features Wyatt, 10 years old at the time of filming, who expresses uncanny insights about bullies and love; Henry, also 10, the son of the musician Stephen Stills and a fountain of knowledge about all things dinosaur; Adam, a curly-haired, 9-year old cellist; Lexi, a shy 14-year-old singer capable of performing Joni Mitchell songs with transcendent ease; and Ms. Hall’s son, Neal, 12, an unpredictable blond charmer. Tricia Regan, the director of the documentary, said the project got rolling four years ago when her friend Janet Grillo, the mother of an autistic boy, asked for advice. “She and other parents wanted to make a film that reached beyond the autism community and expressed to the world how great their kids are. “I said: ‘Honestly, people would rather show up for a root canal appointment than sit through an hour-and-a-half movie about autism. It’s painful, difficult and frightening. Why don’t you turn that on its head by making a movie about kids who are struggling to achieve something, and autism is the obstacle that gets in the way of their success? Find a group of kids with autism who are trying to put on a play.’ And it just so happened they knew Elaine.” Ms. Hall, nicknamed “the child whisperer” after she coaxed star-quality performances from toddler twins in the 1992 film “Honey, I Blew Up the Kid,” shifted gears 12 years ago when she adopted Neal, then 2, from a Russian orphanage. As the boy began showing signs of autism, Ms. Hall put her career on a back burner to focus on his treatment. Then in 2004 she re-entered the workforce armed with a grant and a mission. “I wanted to teach theater and dance to kids with autism, cerebral palsy,” attention-deficit disorder, obsessive-compulsive disorder and Tourette’s syndrome, she said, “anything that gets somebody kicked out of everywhere else.” Dressed in a turquoise Miracle Project T-shirt, jeans and work boots and curled up in a folding chair, Ms. Hall recalled the project’s tumultuous first season, which unfolded before Ms. Regan began shooting. “The first 11 weeks were so chaotic, kids were literally hiding under tables and spinning around in circles,” she said, and whispered: “Then all of a sudden they start coming together as a group. We wrote a play. We learned songs. We wore costumes. We no longer talked about Steven hiding under tables. We we’re saying, ‘O.K., what role do you think Steven should play?’ ” Using videotape of Ms. Hall’s classes to pitch their film project, a group of parents found financial backers and hired Ms. Regan to direct. She moved to Los Angeles from New York and in late 2005 began filming the six-month rehearsal process. Eight weeks in, money ran out. Ms. Regan persevered. “If I walked away, there’d be no movie, and I’d be letting down so many people,” she said. “I kept shooting while producers scrambled for cash just to pay my rent.” Bunim/Murray Productions (of MTV’s “Real World”) eventually stepped in to finance the picture. By then Ms. Regan had realized that her logistical problems paled next to the pressures faced by the parents she’d been interviewing using her mini digital-video camera; none of them sugarcoated their response to the stress of raising an autistic child. Wyatt’s father used an expletive to describe his family’s prospects after a disheartening conversation with a lawyer about educational options. Lexi’s mother tearfully confided that she was getting a divorce. Adam’s mom had a meltdown at dress rehearsal when she learned his cello performance of “Twinkle, Twinkle, Little Star” had been cut from the show. And Ms. Hall faced an unexpected setback during a family outing at the park when Neal abruptly pushed a playmate to the ground. It took some convincing before Ms. Hall understood why her personal struggles needed to be included in the documentary. “Seeing the movie for the first time, I loved it all the way up until Neal pushed,” Ms. Hall said. “I thought it was going to ruin his life. I was afraid my future in-laws would write me off when they saw it. I was afraid everyone would be afraid that Neal would push their kid. So I asked him: ‘There’s this scene where you push the kid. How do you feel about that?’ And Neal typed: ‘I’m O.K. with it. We are messengers.’ ” And their message is clear, as Ms. Regan explained: “The Miracle Project is this oasis where the kids come to relax, but the film wouldn’t be successful unless we also saw how painful it can be for the parents of these kids. When you show both sides, it’s not so scary anymore.” The Lives They Left Behind Suitcases From a State Hospital Attic. By Darby Penney and Dr. Peter Stastny. Bellevue Literary Press. 205 pages. $25. Abigail Zuger, M.D., New York Times- 3/25/2008 Trunks like it usually inspire dress-up games, memory exercises and writing class assignments, not works of medical history — although that discipline could often sorely use some human interest. This particular trunk is an exception: it belonged to a delicately featured Frenchwoman who walked into Bellevue Hospital in Manhattan one day in 1932 to engage the doctors in a dialogue on paranormal communication, and was committed to psychiatric wards for much of the rest of her life. She wound up a long-term resident of Willard State Hospital, a gigantic institution in upstate New York that opened its doors to the incurable mentally ill in 1869 and closed in 1995, sending its last thousand or so patients out to smaller facilities. Left behind in an upstairs storeroom were hundreds of pieces of patients’ luggage. Curators poking through were transfixed by the power and pathos of the contents, their ordinariness a sad contrast to the tangled aberrancy of the owners’ lives. After a decade of cataloging and research, a small subset of the material became the subject of an exhibition, and now a book. One set of 18 pieces of luggage held the complete wardrobe and household goods of a successful midcareer nurse who became convinced her co-workers were conspiring against her. She reluctantly assented to temporary hospitalization at Willard and never left; increasingly incapacitated by paranoia and old age, she died there in her 80s. One suitcase of small items (including a bronze model of the Washington Monument) belonged to an upstate carpenter whose obsession with Margaret Truman and repeated efforts to contact her for marriage earned him attention from the Secret Service, even within the walls of Willard. The government lost interest when he developed delusions of being Jesus Christ, although his family in Ukraine continued to write to his doctors for decades. One dilapidated satchel of religious materials belonged to a German-born Dominican nun whose life slowly crumbled into a confusion her order wanted no part of. In the hospital, she was lewd and flirtatious, proposed marriage to a variety of men, spoke of giving birth to a dachshund and of her breakfast eggs hatching to chickens in her stomach. In her old age she announced she was 11 and happily waited to be sent home. These patients stayed at Willard through the treatment vogues of the last century. Shock therapy was practiced, and the first psychotropic medications were given with enthusiasm. The hospital itself was a giant version of a therapeutic community, incorporating a working farm and workshops. None of it appeared to make much difference to these inmates. As they aged, some of the worst psychoses burned out of their own accord, but few patients were in any condition to be repatriated to the real world. The book’s photographs are transfixing: vibrant young adults newly admitted to the hospital in the grips of wild confusion turn into slack-jawed, dull-eyed (but sometimes quite rational) old men and women. The photographs, in fact, speak far louder and more clearly than the authors’ strident prose, for what could have been a uniquely affecting work proves to be almost unreadable. Stories about the experience of illness are in vogue these days. Some seek to humanize medical science, while others (like those in the movie “Sicko” from Michael Moore) aim to change health policy with the brute force of anecdote. The authors, Darby Penney and Dr. Peter Stastny, are in the second camp. Both are prominent patients’-rights advocates: Dr. Stastny is described on one advocacy Web site as a “dissident psychiatrist” and Ms. Penney as a “long-time activist.” Their platform is clearly stated in the book’s first pages: much mental illness is “understandable reaction to stress,” orthodox psychiatry often “stands in the way of healing” and even the most “distressed” patients will fare better outside institutions. All may be legitimate subjects for debate, but basing a complex argument on fragmented and archaic case histories is problematic both for science and for style. A coherent scientific argument demands complete, current data, not reinterpreted glimpses of the past. Meanwhile, all the eerie, evocative power of the contents of the trunks is sucked right back up by these haranguing narrators, whose awkward prose thumps and screeches like a politician declaiming through a faulty microphone. Readers with the stamina to tune them out will be rewarded with an unusual view onto the locked back wards of psychiatry, where that always controversial border between health and illness remains far more mobile and porous than most of us like to think. The Frenchwoman in whose trunk Edwardian elegance mingled with modern scholarship was transferred among several psychiatric hospitals for her first few years in the system. Still deep in the grips of her obsession with the supernatural, she arrived at Willard State in 1939 at age 43. For decades, she would speak only to demand her release. She developed permanent Parkinsonian symptoms from the drugs she was given. She was discharged to a rooming house in a nearby community in her 80s (“There is no evidence of gross psychiatric symptomatology,” her last physician wrote) and died at 90. She never reclaimed her trunk. When the Bully Sits in the Next Cubicle Tara Parker-Pope, New York Times- 3/25/2008 An eye roll, a glare, a dismissive snort — these are the tactics of the workplace bully. They don’t sound like much, but that’s why they are so insidious. How do you complain to human resources that your boss is picking on you? Who cares that a co-worker won’t return your phone calls? < Bullying in the workplace is surprisingly common. In a survey released last fall, 37 percent of American workers said they had experienced bullying on the job, according to the research firm Zogby International. Unlike the playground bully, who often resorts to physical threats, the work bully sets out on a course of constant but subtle harassment. It may start with a belittling comment at a staff meeting. Later it becomes gossip to co-workers and forgetting to invite someone to an important work event. If the bully is a supervisor, victims may be stripped of critical duties, then accused of not doing their job, says Gary Namie, founder of the Workplace Bullying Institute, an advocacy group based in Bellingham, Wash. This month, researchers at the University of Manitoba reported that the emotional toll of workplace bullying is more severe than that of sexual harassment. And in today’s corporate culture, supervisors may condone bullying as part of a tough management style. But the tide may be turning, thanks in part to a best-selling book by Robert I. Sutton, a management professor and co-director of the Center for Work, Technology and Organization at Stanford. Among other things, the book argues that workplace bullies are bad for business, because they lead to absenteeism and turnover. The New York State Legislature is considering an antibullying bill, and in several other states, including New Jersey and Connecticut, lawmakers have introduced such measures — without success so far. A measure was withdrawn in Connecticut last week after business groups opposed it, although the bill is expected to be resubmitted. Business groups often argue that existing laws are adequate to protect workers. But bullying generally does not involve race, age or sex, which have protected status in the courts. Instead, most workplace hostility occurs just because someone doesn’t like someone else. “Many of these situations fall between the cracks of existing state and federal employment law,” said David C. Yamada, a professor at the Suffolk University Law School in Boston, who has drafted antibullying legislation. “There is a real gap in the law that someone could be tormented and subjected to humiliation and really be suffering because of it, but the courts are saying it’s not severe enough for us to allow the lawsuit to go forward.” The antibullying bills are often referred to as “healthy workplace” legislation. The name is more palatable to businesses, but they also acknowledge the serious health toll bullying can have. Some victims become physically ill from the stress, with depression, anxiety and even symptoms of post-traumatic stress disorder. Surveys also suggest that victims of office bullies call in sick more often — although it’s not clear whether they really are sick or just avoiding the abusive environment at work. A surprising number of bullying cases involve health care settings, where the problem is said to be endemic, with senior hospital workers, particularly doctors and supervisors, harassing nurses and technicians. The problem is also common in academia and the legal profession, experts say. A large share of the problem involves women victimizing women. The Zogby survey showed that 40 percent of workplace bullies are women. This month, more than 300 readers of the Well blog posted their own stories of workplace bullies. One reader shared a story of an assistant manager who became angry with an employee. Despite his high technical skills, she cut off all contact with him. “She gave this employee totally inappropriate assignments, setting him up to fail, and then punished him when he could not complete the assignments,” said the reader, who asked not to be named. “She eventually did not invite this employee to the Christmas party.” The worker finally quit. Still, it can be hard to distinguish between normal personality disputes and the incessant torture of workplace bullying. Researchers at the State University of New York in New Paltz have developed a survey aimed at identifying the full range of behaviors that can constitute bullying. (For a list, go to www.nytimes.com/well.) Some of the behaviors — glaring, failing to return calls, not praising a worker — may seem trivial, but they take a toll when repeated over and over again. “Imagine yourself sitting at a conference table and you offer something as a suggestion and someone looks at you and shakes their head every time,” said Joel H. Neuman, director of the center for applied management at the SUNY-New Paltz School of Business. “It can be damaging to be constantly dismissed in front of your peers,” Dr. Neuman said. “The thing that is upsetting about it is that people come to expect it and say, ‘Well, this is what it’s like around here.’ It shouldn’t be part of the culture, but often it is.” Italy Starts Anti - Anorexia Campaign Associated Press, 3/25/2008 ROME -- Italian authorities are mounting a $1.5 million campaign against a growing epidemic of anorexia and other eating disorders in a country known for its fashion industry and image consciousness. The Italian Ministries of Health and Sports are aiming the project at schools and the media, providing guidelines for magazines, television, radio and Internet sites to discourage ultra-thin beauty ideals. ''Anorexia and bulimia have been for many years diseases that have not been recognized as such. It was sort of a veil of unspoken and unrecognized problems,'' said Giovanna Melandri, minister for young people and sports. ''So what we really needed to do was to take away the veil to make sure young people, young girls and young boys, know that they can die,'' she told AP Television News. The project, which begins next month, will also provide training for dance instructors and coaches of such sports as gymnastics and swimming. And it will include a Web site to encourage teens to discuss healthy eating habits and to counter Web sites where anorexics share tips on starving themselves. Melandri cited statistics indicating that such eating disorders affect about 2 million to 3 million Italians and that 10 percent are men. The Association for Pediatric Medicine recently reported that nearly 65 percent of girls between 10 and 16 want to be thinner than they are. ''This does not mean they are sick, but it means that there is a very reduced acceptance of one's own beauty, one's own very personal and special way of being,'' Melandri said. Italy's rates of anorexia are no worse than those of other Western countries, said Dr. Camillo Loriedo, who treats anorexics at the Center for Eating Disorders at Rome's Policlinico Umberto I hospital. But he said there was more sensitivity to the issue here because of what he called the Italian sense of family. ''Italian families tend to pay more attention to food and the problems of their adolescent children,'' he said. In 2006, the government and fashion industry created a voluntary code of conduct requiring models to show medical proof they do not suffer from eating disorders. The code bans models younger than 16 from the catwalks and calls for a commitment to add larger sizes to fashion collections. The April 16 massacre raised concerns among educators nationwide about how to properly balance privacy and safety concerns. A panel appointed by Virginia Gov. Timothy M. Kaine (D) found that "widespread confusion" about privacy restrictions led to communication lapses among officials who dealt with mentally ill student Seung Hui Cho before he shot and killed 33 people, including himself. Ada Meloy, general counsel for the American Council on Education, said the proposed guidelines don't make any substantive changes regarding a college's responsibility under the 1974 Family Educational Rights and Privacy Act. But she said the regulations would give school officials clearer guidance about the flexibility to disclose information when it is necessary to protect the health or safety of a student or others. "There has in the past been substantial confusion on campuses about what [privacy laws] did and did not allow," Meloy said. "The changes that are proposed in the regulations provide additional assurance that colleges and universities acting in good faith can disclose information from education records in health and safety emergency situations to parents and to others who have a reason to need to know the information." Zyprexa: One Drug, Two Faces Alex Berenson, New York Times- 3/25/2008 In Courtroom 403, lawyers read corporate memorandums to a jury that must decide a lawsuit brought by the state of Alaska, which claims that the drug maker Eli Lilly hid the dangers of Zyprexa, Lilly’s best-selling schizophrenia medicine. At the same time, in Courtroom 301, William Bigley had his own opinions on Zyprexa, and all the other drugs he has taken since 1980 to battle demons that only he can see. On this day, March 14, a state court judge would decide whether Mr. Bigley should be held for 30 days in a psychiatric hospital. Mr. Bigley, 55, told the judge that the drugs were “poison” and that he did not need them. “I’m fine,” he said. His words were sadly undercut by his regular pronouncements that he knows President Bush, owns a private jet and has seen flying saucers. Of all the facts at issue in the two courtrooms, one is beyond debate. Mr. Bigley is not fine. Even so, Mr. Bigley’s hearing — which had an unexpected outcome — offered a textbook illustration of the agonizing choices faced by mentally ill patients as they consider taking Zyprexa and similar medicines, called antipsychotics. By calming the hallucinations and delusions that plague people with schizophrenia, drugs like Zyprexa allow many patients to live outside psychiatric institutions. But the documents being discussed in Room 403 offered plenty of evidence that Mr. Bigley, whatever his delusions, has good reason to dislike the medicines. All antipsychotics have side effects, and Zyprexa’s are among the worst, according to the American Diabetes Association and independent scientists. In many patients, Zyprexa causes severe weight gain that can lead to diabetes, as well as sharply higher cholesterol and triglyceride levels in the blood. Those are all risk factors for heart disease, the leading killer in the United States. Further, the documents introduced in Courtroom 403 show that for much of the last decade, Lilly executives played down those risks. Among themselves, in internal e-mail messages and memorandums, they shared worries that Zyprexa’s sales would fall if the drug was linked to weight gain or diabetes. In 2002, for example, the Japanese government ordered Lilly to warn Japanese doctors against giving Zyprexa to people at high risk for diabetes. But Lilly did not add a similar warning to Zyprexa’s label in the United States. Internally, Lilly executives acknowledged that the warning had hurt Zyprexa sales in Japan. “The impact of the label change in Japan has been very profound,” two senior Lilly executives wrote in a memorandum on July 1, 2002. “There has been a 75% drop in new patients who are being put on the drug.” Indeed, as American doctors have learned on their own about the connection between Zyprexa and diabetes, prescriptions for Zyprexa have plunged. Since 2003, they have slid 50 percent. Yet Zyprexa, which sometimes works better than other antipsychotics on severely ill patients, remains widely used. In the United States, it is still prescribed almost four million times a year. It had sales worldwide of $4.8 billion in 2007, half in the United States. Mr. Bigley’s case illustrates why psychiatrists and patients feel they have no choice but to use Zyprexa, whatever its side effects. Mr. Bigley, a thin man with greasy black hair, cloudy eyes and a salt-and-pepper beard, has been hospitalized more than 70 times since his first breakdown in 1980. Psychiatrists say he has paranoid schizophrenia with symptoms of mania. Over the years, he has been medicated with Zyprexa, Risperdal, Haldol, Thorazine and many other psychiatric drugs, despite his objections. Exactly how many times Mr. Bigley has been put on Zyprexa over the years is unclear. But medical records from his hospitalization in December 2006 refer to his complaints that Zyprexa was making him hungry — a common side effect. Psychiatrists took him off Zyprexa and gave him Seroquel, another antipsychotic, in its place. In 1999, a judge found him incompetent to care for himself and appointed a guardian to oversee his affairs. The records also show that neither Zyprexa nor any other drug has given Mr. Bigley any lasting relief, and that he always stops taking his medicines after being released from the hospital. Unmedicated, Mr. Bigley is jittery and quick to anger. In conversations with a reporter, he was nearly incomprehensible, spewing complaints and curses about the way he is treated. But Mr. Bigley has never been known to be violent or suicidal. Despite his psychosis, he has survived Alaska’s harsh winters. He bounces among apartments, group homes and the Alaska Psychiatric Institute, the state-run mental hospital in Anchorage, mumbling about the Secret Service and other favorite topics to anyone who will listen. But he makes one point with absolute clarity: He does not want to be medicated or hospitalized. On March 14, he repeated that request to state court Judge Jack W. Smith, who was hearing the psychiatric institute’s request to confine him. There was little reason to believe that Judge Smith would side with Mr. Bigley. Hearings like his usually last only a few minutes. Psychiatrists and advocates for the mentally ill say that judges prefer not to second-guess doctors and typically rubber-stamp the requests of hospitals to confine and medicate patients. As he sat before Judge Smith, Mr. Bigley — who had asked that his hearing be open to the public — hardly seemed like a good candidate for release. He fidgeted and interrupted the proceedings as his lawyers shushed him. He had been brought to the Alaska Psychiatric Institute on Feb. 23, after squabbling with housemates at his group home, where a resident called the police. Dr. John Raasoch, a doctor at the hospital who treated Mr. Bigley, said that Mr. Bigley had irritated the staff and other patients. “He’s yelling, swearing on the unit, he hit the door,” Dr. Raasoch said. Antipsychotic medication would calm Mr. Bigley and make him more cooperative, the doctor said. “There’s no point to have a psychotic individual in the hospital and not be able to treat him,” he said. “I think he’s suffering severe distress.” But Judge Smith appeared worried about both the side effects of antipsychotic medicines and that Mr. Bigley’s history suggested he would not benefit from them. “We’re getting a short-term fix that doesn’t change Mr. Bigley’s underlying condition,” he said. Under Alaskan law, a person cannot be forced to take medicine against his will simply because a psychiatrist says he is unhappy or delusional. Mr. Bigley could be confined and medicated only if Judge Smith found he was violent, suicidal or a grave danger to himself because of his mental incompetence. Mr. Bigley was not violent or suicidal, Dr. Raasoch said. But the doctor said he was in grave danger because he might irritate other people, including police officers, to the point where he might end up being hurt. “He’s very inappropriate,” Dr. Raasoch said. “He gets up in people’s faces. I think the majority of people would just punch him.” Elizabeth Brennan, the public defender representing Mr. Bigley, agreed that Mr. Bigley can be difficult. But Mr. Bigley is not in grave danger simply because he is a nuisance, and confining and medicating him would not help him, she said. “The hospital has not shown that treatment will improve him,” she said. After nearly an hour of testimony, mainly from Dr. Raasoch, Judge Smith appeared troubled by the thought of confining or medicating Mr. Bigley against his will. “It sounds like aside from getting in and out of the hospital, he gets by,” the judge said. “That’s a choice that he should be allowed to make.” And so Judge Smith ordered the hospital to release Mr. Bigley, though he acknowledged that Mr. Bigley was likely to be picked up again in a few weeks, or months at most. “I don’t find by clear and convincing evidence he’s gravely disabled,” Judge Smith said. Though the decision was unusual in such cases, Mr. Bigley did not seem overly surprised, or even pleased. “There’s nothing wrong with my head in the first place,” he said to the judge, inserting a seven-letter epithet. Within a few seconds, he began to hector Steve Young, his state-appointed guardian, demanding that he be given a hotel suite. “He’s going to give me a dirty place,” Mr. Bigley complained. With that thought, Mr. Bigley headed for the street, his brain in chaos but his body free from the side effects of the medicines he will not take. One floor up, lawyers for Lilly and the state argued on, debating whether Zyprexa’s benefits outweighed its risks — a choice Mr. Bigley, sound mind or not, had already made. |