The government has spent millions trying to prove that Gulf War Syndrome is not a real disease. A Texas epidemiologist aims to prove otherwise.
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Maybe you’ve heard Chris Yarger’s story before. It has become uncomfortably familiar. After serving his country in the Persian Gulf War of 1991, he returned home to Abilene to resume his work as a ranch hand. He began to experience fatigue, nausea, loss of balance, rashes, joint and muscle pain, insomnia, and memory loss. The symptoms had no apparent cause. A doctor told him he was depressed, and over the next three years he took a variety of antidepressants. But he didn’t get any better. He lost sixty pounds, quit his job, applied for Social Security disability, and was turned down. In 1998 he finally obtained disability benefits from the Department of Veterans Affairs for an “undiagnosed illness,” but not before he’d gone through the family savings and had to apply for food stamps.
“It would have been better if I had just been killed over there,” says the 44-year-old Yarger with a caustic chuckle.
If Yarger sounds a little edgy, it's because he has spent the past decade in the crossfire of a fierce battle about the nature of his affliction—known most commonly as Gulf War Syndrome (GWS)—and, more generally, about just what constitutes a disease and who gets to decide. The process is often far more political than scientific. Public attitudes, morality, economics—all can play a role. AIDS is a classic example. It has always been the same deadly retrovirus. But since it emerged in the early eighties, it has been marginalized as a "gay virus"; then canonized as a politically correct cause célèbre; forgotten as an epidemic conquered by wonder drugs; and re-marginalized as a Third World plague—all in the course of twenty years. Similarly, politics have been played with conditions ranging from chronic fatigue syndrome to attention deficit disorder to drug addiction. (Remember too, that we used to call homosexuality a disease, and in some quarters, the debate rages on.)
Yarger's problem is that his government insists that what afflicts him and an estimated 100,000 other Gulf War vets is mostly in his head, even though some research indicates that it is the result of wartime exposures to various chemicals, ranging from the common insecticide DEET to sarin nerve gas. The government's position is that what Yarger has is not a "specific disease"—a third party that invades the body and affects "typical" people more or less the same way. Instead, he has what medical historian Robert Aronowitz called an "individual sickness," in which at least some of the illness has to do with the person afflicted, especially his or her psyche.
Not that the Department of Defense hasn't taken vets like Chris Yarger seriously. Indeed, it has opened a special office to oversee GWS, poured hundreds of millions of dollars into scores of studies that prove that the ailment is probably psychosomatic, and withstood a considerable amount of criticism defending that position. As it happens, most of that criticism has come from Texans: Dr. Robert Haley, an epidemiologist at the University of Texas Southwestern Medical Center at Dallas, has led research efforts, and Ross Perot, Sr., and Senator Kay Bailey Hutchison have led the battle of words to prove that GWS is, in fact, much more than a new variation of battle fatigue.
When I first began hearing about a Gulf War Syndrome, in 1993, the government was winning the argument. The complaints I heard from disabled vets who wanted me to write about their problems in getting treatment from VA hospitals were heartfelt, but the symptoms were so vague and various that they could have been non-service related; they also sounded a lot like the secondary effects of post-traumatic stress.
The issue became more contentious beginning in 1994, when Perot, having heard hundreds of such complaints himself, asked Southwestern Medical Center—to which he is an eight-figure donor—to develop some hard science on the cause of GWS. Haley, the chief of epidemiology there and a member of one of Dallas' more prominent medical families (his grandfather, father, and three brothers are also doctors), agreed to devise a primarily Perot-funded series of studies centered on 250 Navy reservists who had served all over the Gulf War theater.
At the time, Haley believed that the vets' problems were probably emotional. But the government studies troubled him. It seemed that doctors were just recording symptoms and not trying to find a pattern or a cause. So he imposed what epidemiologists call a "case definition"—just a hypothesis. He then obtained from the reservists detailed epidemiological histories, including their chemical exposures during the war, and compared them to a group of healthy veterans to see how they differed. Sure enough, when he analyzed the raw data with a sophisticated computer program, he found that the seemingly meaningless jumble of symptoms actually fell into three coherent syndromes, all known to result from neurotoxic damage. Moreover, the symptoms tended to afflict vets who had been exposed to three chemical agents present in the Gulf War theater: insect repellents and flea collars; sarin nerve gas, to which some vets were reportedly exposed when U.S. bombers destroyed an Iraqi chemical weapons storage area early in the war; and a third substance called pyridostigmine bromide (PB), which, ironically, the soldiers had taken as an immunization against nerve gas. In the course of delineating these syndromes, Haley claimed that he also eliminated other potential chemical exposures—the infamous oil rig fires—and more important, stress, as causes of the syndromes.
Any one of the chemical exposures alone might not prompt the full range of symptoms, Haley found. But together they seemed to be responsible for a disorder known as organophosphate-induced delayed polyneuropathy, in which chemical toxicity inhibits the actions of an enzyme critical to nervous system function. Haley advanced his work on other vets, including Chris Yarger. He identified the area of the brain affected—the left basal ganglia near the brain stem, an area that regulates such functions as balance and sleep—by performing magnetic resonance spectroscopy on some vets. Finally, he determined that the sick vets probably had a genetic susceptibility to a certain kind of chemical exposure, explaining why not all soldiers exposed to the chemicals were stricken.
When Haley began publishing his findings in the Journal of the American Medical Association and other prestigious peer-review journals in 1997, he was optimistic. "We thought, this is great, the Department of Defense and the VA Central Office are going to call us up and say welcome and you can help," he says. "The problem all along with Gulf War Syndrome was that it was a disease with a lot of symptoms, but no physical signs. Now we'd found the actual brain damage. But instead they attempted to discredit what we'd done."
The main complaint of Pentagon officials is that the self-reported exposures that Haley's work rests on may be scientifically unreliable and that, in any event, while such chemicals might cause acute symptoms, they weren't likely to cause a chronic disease like Gulf War Syndrome. They've also said they'd like to see more peer review and replication of his findings. That all sounds collegial enough, but at a hearing before a Senate Appropriations Committee subcommittee on funding for GWS studies last fall, former Undersecretary of Defense Dr. Bernard Rostker got somewhat personal about it: "We view our interaction with Dr. Haley with disappointment and frustration," he said in assessing Haley's work. To which Senator Hutchison, a ranking member of the committee and staunch defender of Haley's, later retorted, "We're certainly beginning to circle the wagons."
If the Pentagon is circling the wagons, to what end? Perot offered one possible explanation at the GWS Senate hearing when he fumed, "Logically, you would ask, where did Iraq get these chemical weapons? We gave them to them in the eighties to use against Iran. . . . That may be one of the reasons we, you know, juggle, tap dance, and chew gum instead of working on this problem." A Congressional source intimate with the controversy recently suggested a slightly different reason. The Pentagon, he suggests, may be worried about validating the fact that Gulf War Syndrome resulted from this combination of insecticides and chemical weapons for fear terrorists will attempt to reproduce it. If that sounds both paranoid and self-justifying, well, welcome to the world of GWS.
And so the unseemly standoff continues. The Pentagon continues to say it needs more replication of Haley's conclusions. But when scientists in San Francisco drew similar conclusions in their own MRI studies of eight Gulf War vets, it didn't seem to change any minds at the Department of Defense. And, Haley adds, he really can't go much further unless he receives $25 million in Department of Defense grants he's applied for to continue studying GWS—which, he says, has opened him to charges that the only reason he is doing this is to obtain more and bigger grants.
Congress has tried to clear the air by enabling the VA to extend disability benefits to some vets like Yarger, but only under the rubric of "undiagnosed illness" and without granting that the illness was caused by chemical exposure. Thus far only 3,000 or so of the some 100,000 vets supposedly afflicted with GWS have obtained such disability status. That could mean that those suffering from some symptoms of GWS are receiving disability under another diagnosis. Or it could mean that this is not as perilous a medical problem as Haley and Perot and veterans' rights groups have claimed. But it could also mean that because the Pentagon still refuses to link these symptoms to wartime exposure to toxic chemicals, a lot of GWS is still being diagnosed as "non-service connected." It's one more thing about GWS that we may never know because, while we tend to have courts of last resort for just about everything in this society, we don't have one for diseases.
Of course, given that Chris Yarger finally got his benefits, it's only fair to wonder, do we really need to know? There are three good reasons why. First, there is some evidence that vets like Yarger may not have seen the worst of their sickness. Some have wound up with more-serious neurologic diseases such as Parkinson's and amyotrophic lateral sclerosis (ALS, or Lou Gehrig's disease). "We could be in for an epidemic of that if we don't figure out how to treat this," warns Haley.
Second, even if Haley is only partly right about the chemical-exposure connection, GWS provides a unique opportunity to study the pathological effects of certain chemicals, in both combat and civilian settings: a no-brainer of a priority in this age of terrorism and chemical weaponry. Finally, there is a matter of principle here. Chris Yarger appreciates his disability benefits, but there is one more thing he'd like from the government he served.
"All I ever really wanted," he says, "is to know for sure what's wrong with me."