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[Definitie:] "An ergogenic aid is any substance or phenomenon that enhances performance."
(Wilmore and Costill) 
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0 4 - 1 0 - 2 0 0 5 N.J. Creutzfeldt-Jakob cluster turns suburban mom into crusader
October 2 CINNAMINSON, N.J. (AP) -- Janet Skarbek's life was forever altered when she read the obituary of an acquaintance in June 2003. A 56-year-old woman who had worked with Skarbek's mother at the Garden State Park racetrack near Philadelphia had died of Creutzfeldt-Jakob brain disease, the human version of mad cow disease. Barely three years earlier, a 29-year-old accountant at the Cherry Hill track had died of the same rare, always fatal disease. Skarbek wondered: How could two of just 100 administrative employees at the track be felled by a neurological disease health officials say kills just one in a million people each year, usually after age 60? "That's the day it started," she recalled. Almost overnight, Skarbek changed from suburban mother of two, tax manager and Sunday school teacher into an Erin Brockovich-like crusader fighting to keep mad cow disease from spreading through the U.S. food supply. Skarbek, 37, began combing obituaries and over time identified 18 people she believes died of CJD from 1993 to 2004 and had eaten regularly at the same restaurant at the now-closed racetrack. She also spotted possible clusters elsewhere or learned of them from loved ones of people whose deaths were classified as sporadic CJD. Sporadic, or naturally occurring, cases of CJD have no known cause but are not due to eating mad cow-tainted beef -- which has killed at least 180 people in the United Kingdom and continental Europe since the 1990s. Beef-related cases are classified as variant CJD. Skarbek believes some U.S. deaths should have been classified as variant CJD. Both diseases can incubate for decades before symptoms such as dementia and loss of muscle control appear. But variant CJD usually strikes people in their 20s and takes about 14 months to kill; sporadic CJD kills in just six months, almost always people over age 50. "I think it's so important to get this story out there" to the public, Skarbek said. "They need to know about mad cow, that it's here and that the government covered it up." So Skarbek, who "temporarily" stopped working nearly two years ago to focus on the issue, devotes much of her time to researching CJD and to speaking to "whoever will listen." That ranges from politicians, health officials and scientists to reporters, community groups and relatives of people dead or dying from CJD. In June, she visited Terry Schwan of Sterling Heights, Mich., whose son Jeff, an athlete and bodybuilder, died at 26 four years ago of what was classified as sporadic CJD. Schwan's son lost his memory, then his vision and died within five months, a normal span for sporadic CJD. But Schwan said sophisticated brain tissue testing showed he had the same type of CJD as British mad cow victims, leaving her with doubts. Dr. Ermias Belay, an epidemiologist at the Centers for Disease Control and Prevention, declined to discuss the case for privacy reasons. But he said fewer than 10 suspected U.S. clusters have been reported and none have panned out. In each case, testing showed some cases weren't CJD or some patients had lived elsewhere for years, so the number of verified cases was within statistical norms. Belay added that there have been no U.S. mad cow victims except for a woman born and raised in the United Kingdom who died in Florida last year. Dr. Eddy Bresnitz, New Jersey's state epidemiologist, said his investigation last year of the suspected racetrack cluster found three people died of causes other than CJD. Bresnitz ruled the deaths Skarbek linked to the track did not constitute a cluster, or unexpectedly high number of cases, because the track drew millions of visitors from a wide area. Skarbek, a thorough researcher with an impressive recall of details, is unconvinced. "I think we're going to see more of this, sadly," she said. That belief has transformed her life. Petite, wholesome-looking and articulate, Skarbek holds a master's degree from Villanova University. She worked for years as a tax manager for a Fortune 500 company and then as a consultant. In 2001, she testified in Washington before the House Ways and Means Committee on tax reform issues and spoke at a Bush administration workforce conference. Today, she has amateur medical sleuths from Alaska to Florida asking her advice on investigating suspected CJD clusters, a documentary film crew working on her story and Japanese politicians consulting her about whether their country should resume U.S. beef imports -- suspended after the 2003 discovery of mad cow disease in Washington state. In her upstairs office in her Cinnaminson home in Cinnaminson, Skarbek tracks mad cow developments via the Internet, works the phone and tries to keep up filing of her voluminous research. Stacks of plastic organizer bins nearby have labels running from the mundane -- Sunday school, taxes and Disney (the family's favorite vacation spot) -- to categories such as "mad cow to do ASAP," death certificates and Idaho cluster. In the latest suspected cluster, the Idaho Department of Health and Welfare last week said a second and third CJD case have been confirmed by autopsy and four other possible cases remain under investigation. Skarbek is pushing for a total ban on animals in the human food chain eating blood or body parts from other animals, and she wants doctors nationwide to have to report CJD cases so more victims can be autopsied and more learned about the disease. Officials at state and federal government agencies, including the U.S. Department of Agriculture and the Food and Drug Administration, insist the beef supply is safe. They consistently dismiss Skarbek's suspicions that some sporadic CJD cases really are a different strain of variant CJD. But some university CJD researchers and other scientists say numerous experiments on animals, studies of eating habits of CJD victims and other evidence indicate it's possible Skarbek is right about some food-related CJD cases being misclassified. "I think it's likely. How likely is very difficult to say," said Dr. Jiri Safar, an associate neurology professor at University of California-San Francisco and former National Institutes of Health researcher. Safar said that without proper training, pathologists might not be able to distinguish brain-tissue damage in patients killed by naturally occurring CJD from those killed by variant CJD. Even if Skarbek is wrong, Michael Hansen, senior scientist at Consumers Union, other scientists and the CJD Foundation, a patient advocacy group, support a ban on feeding animal parts and blood to any animals in the human food chain, not just cows. In mid-September, the FDA announced long-delayed plans to put further limits on feeding animal parts to farm animals, but not on feeding cow blood to calves. That could well be delayed, with a temporary commissioner now running the agency. "It's much more lip service," Skarbek said. Meanwhile, Skarbek has become much more careful about her family's food. "We eat very limited beef, and we buy it from local New Jersey farms that feed their cows organically," she said. |
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