The war over Gulf War Syndrome
For Charles Townsend, war, as the saying goes, was hell. Among the first troops deployed to the Middle East during Operation Desert Shield in August 1990, Townsend worked long days in blazing sun and menacing sandstorms to set up a base camp in the Saudi Arabian desert. Repeated fogging of the camps with pesticides did little to stem the swarms of sand fleas and mosquitoes that carried the threat of lethal disease. When the war began in earnest in January, he lived in fear that the Iraqis would attack with chemical nerve agents.
But the stressful eight months that Townsend spent in Saudi Arabia as a member of the 18th Airborne Corps were nothing compared with what he has endured during the seven years since the Persian Gulf War ended in February 1991.
The 48-year-old career Army sergeant has battled an array of mysterious ailments that defy easy diagnosis. He cannot hold a coherent conversation and often finds himself hopelessly lost when traveling through places he has been dozens of times before. His once-athletic physique has withered from years of joint pain, muscle aches, and chronic diarrhea. He is frequently dizzy and suffers from fatigue and sleep disturbances.
"It is as if I was killed in Saudi Arabia and my body's too dumb to realize it, so I'm still walking around," Townsend says.
Trained to jump from planes behind enemy lines, he now has trouble walking a straight line. He was fired from his last job as an assistant in a law firm after just two months because he could not concentrate or think clearly. That was four years ago, and he hasn't worked since. Today, Townsend is essentially homeless, sleeping in his truck in the parking lot of the Dallas Veterans Affairs hospital when he wears out his welcome at the homes of friends and relatives.
After hundreds of visits to the V.A. here and in Houston, doctors have found nothing clinically wrong with him. He says doctors made it clear they thought he was faking in order to collect medical benefits and disability.
Over the years, he grew angry and increasingly agitated, so the doctors decided his medical problems were in his head. For several years they treated him with a host of psychotropic drugs for post-traumatic stress disorder, a diagnosis he resented and adamantly rejected.
"Any post-traumatic stress disorder I had came from the lack of treatment I got at the V.A.," Townsend says bitterly. "You don't get bloody stools from post-traumatic stress disorder. You don't fall down from post-traumatic stress disorder. But you can get pretty stressed out when nobody believes you're sick."
His most recent course of treatment brought him little relief. "I haven't seen an improvement, but rather a slow, steady decline," says his older sister, Sharon Brewer.
Finally, in January, Townsend's doctor at the V.A. took him off the psychotropic drugs and enrolled him in an extensive study at the University of Texas Southwestern Medical Center. The research Southwestern doctors have done into the causes of what has been dubbed Gulf War Syndrome has brought a glimmer of hope to Townsend and thousands of other vets who share his plight.
Led by epidemiologist Dr. Robert Haley, this team of Southwestern doctors is convinced they have scored a medical breakthrough. They believe their studies show that many Gulf War vets suffer from a subtle form of brain and nerve damage caused by low-level wartime exposure to a mixture of toxic chemicals, including pesticides, insect repellent, nerve gas, and experimental anti-nerve-gas pills. What's more, if they are correct, these doctors believe "the country potentially could be sitting on a time-bomb of neurological illness," says toxicologist Dr. Tom Kurt, who is part of Haley's team.
Though far from conclusive, Haley's studies, announced early last year, have been championed by veterans and their advocates nationwide, who long believed the vets were poisoned. But convincing the medical and military establishments that their findings are valid has been nigh impossible.
The Pentagon's official policy is that there is no such thing as Gulf War Syndrome, according to Maj. Tom Gilroy of the Pentagon's Office of the Special Assistant for Gulf War Veterans. To the extent that the vets' health problems are tied to their service in the war, doctors say their symptoms are too disparate to qualify as any single disease. Conventional medical thought, not to mention the Pentagon party line, places the blame for the veterans' ailments on stress. And the Presidential Advisory Committee on Gulf War Veteran's Illnesses--a group of medical experts and laymen appointed by President Clinton to study all relevant research and data on the subject--came to the same conclusion in its final report this fall.
So Haley and his colleagues have found themselves in a situation not unlike that of the veterans they have studied for the past four years. They have been disbelieved, maligned, harshly criticized, and all but dismissed. A few months ago, when the Southwestern doctors managed, over the objections of a medical panel, to secure government funding to continue and expand their studies, prominent scientists complained in the national media that politics had triumphed at the expense of good science.
But a few signs indicate that the tide has begun to turn in the Southwestern researchers' favor. Both a Congressional panel and scientists with the General Accounting Office, the investigative arm of Congress, recently chastised the V.A., Pentagon, and presidential advisory committee for ignoring or minimizing all theories except stress as the possible cause of the veterans' illnesses. The Pentagon's failure to consider other suspects, including exposure to toxic substances, delayed valuable research for years, according to the GAO report. On the heels of these criticisms, some high-level Pentagon officials and members of the Department of Defense medical staff, not to mention first lady Hillary Rodham Clinton, have a newfound interest in the Texas doctors' work.
This February, they scored another coup when a majority of members of the presidential advisory committee questioned national media reports, including a PBS Frontline documentary, that linked Gulf War illnesses solely to wartime stress and characterized researchers such as Haley as little more than charlatans. In response, six of 11 White House panel members wrote a letter to President Clinton expressing their belief that at least some Gulf War veterans were ill from low-level chemical exposure. With the recent deployment of thousands of American troops to the Middle East, the letter warned, toxic chemical exposure should be "of particular concern."
"This is a huge can of worms," says Haley, sitting in his cluttered office on the sprawling Southwestern campus on Harry Hines Boulevard. "This issue is so complicated, and there are a hundred different nuances, and you have to understand all of them before you can begin to put all the pieces of the puzzle together. To some that means what we've found is a delusion. To others, it's brilliant science. So, who's right?"
The Persian Gulf War was the U.S. military's finest hour since World War II. Victory was swift, deaths and casualties uncommonly low. Of the 700,000 U.S. troops deployed, fewer than 700 were killed or wounded.
The war lasted a little more than a month. But evidence soon arose that some U.S. soldiers were paying a punishing, long-term penalty for their victory. Shortly after they returned, groups of veterans were stricken with a constellation of strange and incapacitating symptoms that resembled a bad case of the flu--except the veterans weren't getting better. The V.A. in Indiana reported the first cluster, then came similar reports out of Alabama and Georgia about members of a Navy Reserve mobile construction battalion.
Test after test came back normal, and doctors could find no medical explanation for the illnesses. The Pentagon dispatched an epidemiologist and environmental specialist to investigate the source of the health problems and came up empty-handed. Eventually, military doctors would examine 70,000 veterans and determine they were suffering from 14 different illnesses.
Then came reports from Great Britain that some British troops who fought alongside Americans were coming down with similar maladies.
Several theories emerged in attempts to explain the cause of the illnesses. In addition to being given vaccinations to battle a variety of common infectious diseases, U.S. and British troops were inoculated with vaccines against such potent biological warfare agents as anthrax and botulinim toxin. But the military had lost most of these records, making it difficult to track which soldiers might have suffered adverse reactions. Another preventive measure administered to the troops also raised concern. Pyridostigmine bromide (PB) pills were to be taken as a precaution against chemical attacks, but they produced their own nasty side effects in many soldiers, including gastrointestinal problems, headaches, and dizziness.
Exposure to petrochemicals also became a prime suspect. Soldiers located near Kuwait at the end of the war were exposed to the smoke from oil-well fires, and diesel fuel was spread around the camps to reduce windblown sand.
Some medical experts here and abroad also began to suspect pesticides as a potential culprit. In the mid-1990s, British military leaders were forced to admit that they had been misled about the use of pesticides during the war. They would eventually learn that it had been much more widespread than they had been told. Both the Americans and Saudis routinely--and in some cases heavily--doused camps with common pesticides such as Dursban, which belongs to a class of chemicals called organophosphates.
In addition, the U.S. military issued tubes of insect repellents to the troops. Some of the products contained high levels of the chemicals DEET and ethanol, which enhance absorption by the skin. Soldiers also were issued permethrin, an insecticide that was to be put on their uniforms. Some soldiers also sought protection by tying Dursban-laced flea and tick collars around their necks, wrists, and legs, though the practice was not authorized by the military.
Taken separately, there seemed little reason to believe these exposures were enough to damage the troops, but their collective effect was unknown. While speculation was rampant among veterans' groups, precious little science was being conducted to investigate the plausibility of any of the theories.
By far the most prevalent theory was that troops had been exposed to poison gas. But the evidence was circumstantial and anecdotal. Czech military teams hired by the Saudis for their expertise in monitoring toxic gas detected levels of sarin and mustard gas several times during the war. Chemical alarms sounded frequently during the air and ground war, but they were just as frequently dismissed as false alarms.
During Senate hearings on Gulf War Syndrome conducted by former Michigan Sen. Don Reigle, veterans reported instances of acrid clouds of odd-colored smoke wafting over the encampments after explosions. Some reported that their skin burned when they didn't get their chemical protective suits on in time. They now suffered rashes where their skin was burned.
Most chemical nerve agents are organophosphates--essentially insecticides for people. They are nasty substances, and the prevailing military doctrine was that the effects of nerve gas were immediate and severely debilitating. Either they kill you or give you obvious brain damage, or you recover fully. Since no evidence existed of acute nerve-gas poisoning during the war, the Pentagon maintained there was little likelihood that troops were exposed.
The veterans were not convinced. James Tuite, a former Secret Service agent and high-ranking congressional staff member, spearheaded the Senate investigations into the U.S. sale to Iraq of chemicals that could be used to produce poison gas, which led to the inquiry into Gulf War Syndrome. In 1994, he asked to see Pentagon logs recording exposure to chemical or biological weapons during the war. These were supposed to include records of Iraqi munitions depots that allied forces destroyed. Blowing up caches of nerve gas near the front lines could account for low-level exposures to the allied troops, who, theoretically, then would have been wounded by the equivalent of friendly fire.
Tuite was told the logs did not exist. A few years later, the Pentagon would admit that 80 percent of the logs had been destroyed.
Circumstantial evidence alone had persuaded people such as Tuite that the Pentagon was not being truthful about the toxic risks in the gulf. "To this day, I believe that the Pentagon did not want the truth to be known because it would mar the image of this military victory," says Tuite over the phone from his home in Virginia, where he has continued his investigations independently.
Others maintained that the government was hiding evidence so it could deny veterans costly medical benefits and disability. Without proof that the veterans' ailments were tied to their wartime service, many were being denied treatment at V.A. hospitals.
The Pentagon and Veterans Affairs officials concluded that a percentage of the ill veterans would have become sick--even with unexplained illnesses--whether they fought in the war or not. But that explanation did not account for all of the almost 100,000 vets who had registered health complaints with several federal agencies. A Naval physician researched literature on combat-related illnesses going back to the Civil War. He found that symptoms similar to those reported by Gulf War veterans were common after every war. They were simply a function of combat stress.
Veterans Affairs began treating veterans in their post-traumatic stress disorder clinics. Studies conducted there concluded that as many as 14 percent of the sick veterans were suffering from PTSD. "All these vets were being seen in the PTSD clinics. If you use a hammer, everything begins to look like a nail," says Haley, who would eventually become suspicious of the government stress studies.
Blaming it all on stress was a convenient solution, says Paul Sullivan, a Gulf War veteran who runs the National Gulf War Resource Center in Georgia. "If 100,000 Gulf War veterans are sick, then who really won the war?"
Robert Haley was once one of the fiercest skeptics of Gulf War Syndrome. He didn't believe it existed, and he had no intention of proving otherwise. "Everyone knew there was nothing to it," Haley recalls. "It was either stress or malingering. It was being mentioned in the same breath with multiple chemical sensitivities and other non-illnesses."
Then, in spring 1994, Haley received a call from U.T. Southwestern Medical Center President Dr. Kern Wildenthal, who invited him to a meeting with Ross Perot. A longtime champion of veterans, Perot had returned recently from a series of cross-country speaking engagements with veterans' groups. After almost every lecture, Gulf War veterans and their spouses besieged him. They told him harrowing stories about how those who returned from the Middle East were not the same men and women they were before the war.
Perot told Haley that he was aware that the Pentagon and V.A. didn't think there was anything to this. Maybe there wasn't, but he was willing to fund a study to satisfy his own curiosity.
"I fully expected this to be stress, and I told Perot not to be surprised if the results showed it was psychological," Haley says.
Perot told him there were no strings attached and that he was prepared for the possibility of "hitting a dry hole."
An epidemiologist with the Centers for Disease Control and Prevention in Atlanta for 10 years, Haley was a bona fide disease detective. During his tenure at the CDC, Haley worked on solving hospital-based epidemics--such as staph infections--across the country. He also helped his colleagues unravel some of the most perplexing epidemics in modern medical history, including Legionnaires' disease, toxic shock syndrome, and AIDS, all of which were, at the outset, as mysterious as Gulf War Syndrome.
Perot's challenge, theoretically at least, was right up Dr. Robert Haley's alley. One of four Dallas brothers who pursued a career in medicine like their father, Haley was considered the philosopher and thinker of the family. He liked puzzles--at least ones for which there was hope of finding a solution.
At the time of the Perot meeting, Haley was about to launch a "great study on Hepatitis C," he says. He had just finished solving a mysterious outbreak of histoplasmosis among faculty and students on the Southwestern campus, tying it to an overabundance of bird droppings near buildings at the school.
Haley fully expected to disprove the theory that Gulf War Syndrome was caused by chemical toxicity. Two weeks after meeting with Perot, he and medical toxicologist Dr. Thomas Kurt, a UT Southwestern faculty member and founder of the North Texas Poison Control Center at Parkland Hospital, flew to Washington, D.C., in April 1994 to attend a National Institutes of Health symposium on Gulf-related illnesses.
For two days they listened to the world's leading medical experts hold forth on the laundry list of symptoms suffered by the vets and the risk factors they were exposed to in the gulf. The consensus of the doctors present was that the symptoms were too ambiguous and common to constitute a single disease.
But where most doctors saw ambiguity, Kurt thought he recognized the symptoms of a specific, albeit rare, disorder with the unwieldy name of organophosphate-induced delayed neuropathy (OPIDN). In layman's terms, it is the delayed onset of mild to severe brain, spinal cord, and nerve damage suffered by people who have had repeated low-level exposures to pesticides or other compounds made from organophosphates. The workers--primarily farm workers, crop dusters, and veterinarians--frequently have no immediate reaction to the chemicals, but the damage--memory loss, balance disturbances, numbness or tingling in the extremities, muscle fatigue, and joint pain--shows up two weeks to a month later.
Five of the 20 risk factors in the Gulf War theater of operations were organophosphate chemicals.
"I know what this is, it's OPIDN!" Kurt whispered to Haley after nudging him in the ribs.
"I said, 'OP-what?'" Haley recalls. "I didn't know what he was talking about, because the average doctor never sees it. They go to a toxicologist for treatment. An average G.P. [general practitioner] will tell you, you have stress," Haley adds, only partly in jest.
Testing the Pentagon's awareness of the disease, Kurt stood up and asked the military's top chemical weapons expert whether nerve gas or other organophosphates caused delayed neurotoxicity with chronic symptoms similar to those they were seeing in the Gulf War veterans.
"He said, 'absolutely not,'" Kurt recalls. "I knew he was either uninformed or covering up."
Evidence that low levels of toxic chemicals, particularly pesticides, cause long-term chronic illnesses had been available since the 1930s. Similar evidence involving the nerve gas sarin has been available for at least two decades. In the mid-1970s, the Pentagon commissioned neurologist Frank Duffy, now at Harvard Medical School, to study approximately 100 workers at the Rocky Mountain Arsenal outside Denver who had been exposed to low doses of sarin.
According to the studies, the workers exhibited few symptoms at the time, but later complained of fatigue, impotence, sleep problems, and memory loss. A year after the exposure, Duffy tested the electrical activity in their brains. He found that the brain patterns were significantly different from patterns in the brains of unexposed people working in the same facility. When he exposed monkeys to low doses of sarin, they developed similar brain abnormalities.
In 1992, scientists from India exposed mice to low levels of sarin over a two-week period. The mice developed chronic brain and nerve damage that didn't show up until two weeks after the experiments began.
Despite such evidence, military doctors were telling Haley and Kurt that if nerve agents didn't kill or severely maim you in the short run, they had no long-lasting effects. No one who went to the gulf exhibited acute symptoms of nerve-gas poisoning, according to medical records kept during the war.
But those records, Kurt says, might be misleading. A large percentage of the troops reported side effects after taking PB tablets, including gastrointestinal problems, headaches, dizziness, and difficulty breathing. These are the same symptoms produced by exposure to low doses of sarin.
While the Pentagon steadfastly denied that any evidence existed of nerve-gas exposure during the Gulf War, it was clear at least that there weren't sufficient levels to have killed anyone. But Kurt was concerned that repeated exposure to low levels of nerve gas and other chemicals might have combined to cause delayed neurotoxicity in the veterans.
To Kurt's knowledge, no research had been done on the synergistic effects of the kind of chemicals that were present in the gulf during the war. Kurt returned from Washington and designed a series of experiments that would test combined effects of those chemicals on animals. Kurt contracted with a leading toxicology researcher at Duke University Medical Center, who conducted the experiments on hens, which react to chemicals much as humans do.
When the researchers injected hens with single doses of the insect repellent DEET or the insecticides permethrin or Dursban or the anti-nerve-gas agent PB, even at doses three times what the soldiers most likely received, they could detect no signs of illness in the birds. But when they combined two of them, the hens began to lose weight and develop diarrhea, breathing problems, weakness, and tremors. When the birds were injected with combinations of three chemicals, they grew gravely ill. Lab tests revealed nervous system damage in the hens.
Why would a combination of organophosphates hurt the nervous system when single doses did not? The answer is complicated and has to do with enzymes in the blood called cholinesterases. These enzymes act as scavengers and cull from the bloodstream foreign substances such as pesticides. They also regulate the nervous system. The enzyme can handle even a large single dose of a toxic chemical, but multiple doses can result in a buildup of toxins that make their way to the brain.
Adding PB to the formula may exacerbate the condition exponentially. PB has long been used as a treatment for the debilitating disease myasthenia gravis, which is characterized by severe muscle weakness. Even high doses proved to be safe for these patients. The military decided to issue PB tablets as a preventive measure against nerve gas, because the chemical temporarily neutralizes cholinesterase. The theory was that PB would protect a certain percentage of the enzyme from destruction by nerve gas.
But if a soldier had already been exposed to chemicals before taking the tablets, or they took higher than recommended dosages, PB could cause neurotoxicity, says Kurt, citing recent animal studies.
Haley had his own epiphany at the NIH symposium. In investigating an epidemic--the medical equivalent of tracking down a suspect in what appears to be a serial killing--a good medical gumshoe must determine what symptoms and risk factors all the victims have in common. This forms a case definition, and if you don't do that, Haley teaches his medical students, you are doomed never to find the cause of an epidemic.
No one had done that with Gulf War Syndrome. Doctors working on Gulf War Syndrome told the NIH symposium audience that they were loath to come up with a case definition, because the symptoms were too varied and common. Haley, however, suspected that other factors may have come into play.
"The reason I think they were reluctant to write down a case definition was that to do so may indicate that somebody has accepted this as a disease and to do that would have all kinds of political ramifications, so it was never done," he says.
After the NIH conference, Haley and Kurt returned to Dallas. Together with Dr. Jim Hom, a Dallas neuropsychologist, they devised a series of extensive studies to test their hypothesis that exposure to a combination of chemicals had made the veterans sick. They would also investigate the role of psychological factors. Hom previously had done research in differentiating organic brain disease from depression in older patients.
They submitted their proposed studies to the Pentagon for funding, to thwart potential criticism that private funding might bring. But they were turned down and instead used Perot's largesse--$370,000 in all.
Haley and a team of scientists began by visiting five Southeastern cities and meeting with members of a Navy Reserve unit who performed construction work throughout the war zone. They had the veterans fill out lengthy surveys that asked very specific questions about their wartime activities and symptoms since then. A little less than half the battalion--249 reservists--participated.
Haley analyzed the results and found that about one-fourth of the veterans suffered symptoms that occur together. Applying a mathematical formula, Haley concluded that the symptoms actually clustered into three distinct syndromes that appeared to be variations of OPIDN. A survey of risk factors asked the veterans whether they used insect repellents or PB tablets, believed they were attacked by poison gas, were exposed to smoke from oil-well fires, used kerosene to heat their tents, or abused drugs or alcohol, among other things. Haley's new syndromes were four to eight times more common in veterans who had responded that they were exposed to combinations of toxic chemicals than those with no exposures.
"That's an incredibly high risk factor in an epidemiological study," says Haley. "Do you know what the relative risk factor of Rely tampons was in toxic shock syndrome? It was three." (Rely brand tampons were taken off the market in 1980 after their use was linked to toxic shock syndrome.)
Forty-three veterans--about half of whom were healthy--were flown to Dallas where they underwent extensive, sensitive neurological exams that tested for balance disturbances, slowed involuntary reflexes, and damaged nerve impulse flow. When a panel of top neurologists reviewed the findings of each veteran individually, it could not diagnose a known disease. But when Haley compared the test results of the sick vets with the healthy ones, he found that the sick vets showed significantly more impairment on most of the exams.
The results complemented tests done by a Scottish doctor on British Gulf War vets that showed significant peripheral nerve impairment.
"That is exactly what you would expect to find with low-level toxic chemical poisoning," says Haley. "Chemicals don't take a big bite out of the brain like a tumor or stroke does. It is diffuse, damaging a random axon here and a random axon there."
Hom came up with similar results after giving the group tests that measure brain function. The sick vets did worse than the healthy vets on 57 out of 71 drills that required participants to remember patterns of numbers, follow a sequence of letters and numbers simultaneously, and other mental exercises. (The results also showed that the sick vets were not suffering from post-traumatic stress disorder or other psychologically related illnesses.)
Haley called the first syndrome impaired cognition. The veterans in this group had symptoms of distractibility, difficulty remembering, insomnia, slurred speech, and migraine-like headaches. (Chronic diarrhea characterized all three syndromes.) They were typically younger veterans who wore flea collars and worked outside in security detail where, theoretically, they might have been exposed to nighttime pesticide fogging.
Syndrome 2, called confusion-ataxia, comprised the sickest vets. They suffer from severe confusion and disorientation, dizziness, problems thinking and reasoning, and sexual impotence. These veterans were older and reported severe side effects from pyridostigmine bromide tablets. They also believed they were exposed to chemical weapons on the same day that Czech military teams detected sarin.
"This is the group of guys who can't read a book anymore," Haley says. "Some of them got lost in the Atlanta airport when we were bringing them down here for tests. Half of them were unemployed, and others were underemployed."
Charles Townsend's severe symptoms indicate that he is suffering from Syndrome 2, confusion-ataxia. And the risk factors he reports support this diagnosis. During his time in the gulf, he says, the chemical alarms sounded at least 10 times. Following his commander's orders, he took the PB pills, ingesting 67 in all during the seven and a half months he was in Saudi Arabia. The pills made him sick to his stomach and made him feel as if he "had sea legs." At the time, though, he ignored most of the symptoms.
"It was a war," he says. "The adrenaline rush was like no tomorrow."
Sore joints and muscles and tingling or numbness in the hands and feet characterized the third syndrome--artho-myo-neuropathy. These veterans reported using insect repellent containing 75 percent DEET and experiencing side effects from PB tablets.
As the Southwestern doctors were completing the clinical and animal studies, the Pentagon made a stunning revelation. A full five years after the war ended, it finally admitted that American troops released sarin nerve gas when they blew up an Iraqi ammunition storage site at Khamisiyah, Iraq, after the war ended. At first, DOD officials estimated exposure at only 400 troops. They were then forced to revise the number upward to around 20,000. The CIA has since speculated that as many as 100,000 were exposed.
"All of the pieces were fitting together," Kurt says.
No one was more surprised at the findings than Haley. At every step through his studies, the results refuted what he had expected to find. He thought his collaborators had raised an important new theory about the causes and nature of the persistent health problems in Gulf War veterans.
The next step was to get papers about the studies published in a respected scientific journal. The Journal of the American Medical Association put the doctors through a grueling eight-month peer review for which they had to answer questions from an anonymous panel of scientists.
The studies finally appeared in JAMA in January 1997. Haley announced his findings at a news conference at the National Press Club in Washington, D.C. News outlets across the country reported that the Texas doctors found a link between chemical toxicity and Gulf War Syndrome.
But the impact of their findings was blunted somewhat by the previous day's Washington news conference announcing the presidential advisory committee's conclusions that it could find no evidence that exposure to chemical weapons or other toxic substances had hurt the health of Gulf War veterans. The 11-member panel also found no specific syndrome affecting the veterans, but said that battlefield stress was almost certainly a contributing factor. The report did recommend that the Pentagon fund research on long-term effects of low-level exposure to nerve gas and on the synergistic, or additive, effects of multiple chemical exposures.
It was as if the prestigious White House panel had dismissed the Texas studies. In fact, a prominent member of the panel, Dr. Philip Landrigan of New York's Mount Sinai Hospital, wrote a critical editorial about the studies that appeared in the same issue of JAMA. Though Landrigan said the studies' new information was "fascinating," he took the scientists to task for "drawing overly broad conclusions from small and highly selected populations"; for "reconstructing exposure scenarios from self-reported data"; and for not using "appropriate, state-of-the-art, objective instruments in the evaluation of subtle neuropsychological dysfunction."
That was mild compared with some of the other criticism. Where Haley and his colleagues thought they were plowing new ground on the frontiers of science, other doctors interpreted their work as bordering on science fiction. One JAMA letter from a group of doctors from the medical schools at Georgetown and Johns Hopkins universities accused the Texas doctors of advancing "from unmerited speculation to fantasy" in their conclusions. Accompanying the letter in small print was the doctors' statement that a chemical company had paid them to review and respond to Haley's studies. The doctors failed to mention, however, that the chemical company subsidizing them manufactures the pesticide Dursban.
Other doctors questioned the relevancy of the animal studies, because the doses given the hens were higher than what the soldiers could have been exposed to. Even The New York Times weighed in with an editorial, pointing out the studies' weakness because of their small sample size.
A few months after Haley's studies appeared, they were further undermined by three studies reported in The New England Journal of Medicine that concluded Gulf War vets were not dying, being hospitalized, or producing deformed offspring at higher rates than vets who were not deployed to the gulf.
Toxicologist Tom Kurt was not surprised by the criticism, especially from the presidential committee's Landrigan. "He couldn't necessarily jump on the bandwagon and enthusiastically endorse us," Kurt says. "To do so would be to admit that everything he and the other panel members thought before was incorrect."
Haley, on the other hand, was nonplussed by the harshness of the criticism. "Our chemical synergy studies were groundbreaking, absolutely revolutionary," says Haley. "We proved the biological plausibility that the very chemicals used in the war in ordinarily harmless levels could combine to cause neurotoxicity. What they should have said was, 'This is a brilliant new idea, and the Pentagon should fund a whole lot of research into it.' But we got instead, 'The dose is not exactly right; therefore it is not valid.'"
Haley takes issue with the other complaints about his work, particularly those concerning the sample size and self-reported risk factors.
In a letter to The New York Times, Haley defended his work by pointing out that "The causes of Legionnaires' disease, toxic shock syndrome, and AIDS were all uncovered by small studies similar in size to ours."
Haley offers similar evidence to defend other criticisms. "The CDC has solved a thousand epidemics with a case-control approach with self-reported risk factors," he explains. "But the experts say when we did it, it was invalid. What is far-fetched about veterans reporting if they used insect repellent or that they heard an explosion, the chemical alarms went off, sometimes a cloud was seen and their skin burned or tingled?"
Except for Khamisiyah, the Pentagon has not confirmed any other reports of nerve-gas exposure, though they have attempted to validate them. According to a Pentagon spokesman, its investigators have not been able to find the source of the sarin gas picked up by Czech monitors. Vets now derisively refer to this as the "immaculate detection." The Pentagon attributed one report of an explosion near a Navy combat construction crew to a sonic boom; a report of an eye-searing, noxious cloud to rocket propellant. The men Haley studied were nowhere near Khamisiyah, so the question remains whether they were really exposed to nerve gas.
The question does not interest Haley any longer. "Our feeling is that it is an unknowable question. If there is evidence, it is classified. To argue over the question gets us nowhere. My job is to fix the veterans, to find out which ones suffered injuries that were service-connected so they can get the benefits they deserve. They are war heroes. We need to give them the Purple Heart and take care of them."
Stung by criticisms of their studies but undeterred, Haley and his colleagues forged ahead. They wanted to expand upon and corroborate their earlier work by giving the symptoms-and-exposure survey to thousands of veterans nationwide. They intended to administer more sensitive neurological tests to pinpoint where in the nervous system veterans had been damaged, conduct animal studies to determine a model for low-level brain damage, and perform chemical studies in test tubes.
They also wanted to devise a diagnostic test and to find treatments--all within three years. (There is no cure for organophosphate-induced neurotoxicity, although there are a few treatments for some of its myriad symptoms.) They wrote a plan that they referred to as the Manhattan Project for Gulf War Syndrome. The price tag came to $16 million.
Last March, the group submitted a grant proposal to the Persian Gulf Veterans Coordinating Board. A coalition of representatives from the Pentagon, Veterans Affairs, and the Department of Health and Human Services, the board oversaw the ever-expanding pot of Gulf War illness research funds the country had been shamed into allocating in the last two years.
In June, Haley learned that the peer-review panel of scientists rejected his proposal. "We were dead in the water," he says. "The peer review gave our human studies very high marks. But the panel didn't like the animal and test-tube studies. When they averaged the score, it came out moderate, so they rejected the whole proposal. If this were NIH, they would have funded the parts they liked."
But by fall, the Department of Defense had agreed to give the Texas doctors $3 million to fund a portion of their studies. Members of the president's advisory committee were outraged and scolded Bernard Rostker, head of the Pentagon's Office of the Special Assistant for Gulf War Veterans, which was created after the embarrassing revelations about Khamisiyah. And they leaked a story to The Washington Post that implied that Haley's group had used their Perot connection to put political pressure on the Pentagon and the White House.
The fact is that Perot did use his clout to get Haley an audience with the joint chiefs of the four military services, as well as with Secretary of Defense William Cohen. Hillary Clinton called Haley to find out more about his work.
But Haley launched the lobbying effort after first being contacted independently by DOD Director of Health Affairs Gary Christopherson.
According to Haley's version of events, Christopherson had heard about the high marks Haley's clinical study proposal had received. The Pentagon was well aware of Haley's earlier work; when Rostker held 11 town meetings around the country last year, veterans brought up Haley's studies at every one. Christopherson did not return phone calls for this story, but the report that ran in the Post conceded that Haley's version of events checked out. But they still put a negative spin on the story.
"Maybe we did lobby, but so what?" Haley says. "I was trying to get money to continue our work. This is America. You're supposed to try and figure things out."
The DOD funded just the parts of the study that received favorable peer-review comments. Perot is funding another portion of the work; Haley has convened a panel of experts nationwide to help iron out some of the design flaws in the animal studies. He has gone back to the DOD for more funding, but this time he must pass peer review before he gets any more money.
Haley has been busy trying to prove his theories, but he has also devoted a fair amount of time to examining--and ultimately rebutting--the theories of others.
He first trained his sights on stress, which he jokingly refers to as "the S word." His interest was particularly piqued when the psychological tests administered by neuropsychologist Jim Hom revealed that the veterans did not suffer from post-traumatic stress disorder or exhibit a higher level of psychological problems than other people with chronic illnesses. So Haley decided to re-examine the 16 studies that had convinced the presidential advisory committee that stress was the biggest culprit.
"I always thought that combat stress was a non sequitur," he recently told a group of Southwestern medical students during a lecture on his gulf-related work. "In order to be diagnosed with PTSD, you have to have been confronted with an actual life-threatening event to which you responded with intense fear, horror, and helplessness. You don't have that with the gulf. Most of the guys were in tanks, zapping tanks on a computer screen, at three miles when the other guys couldn't even fight back. It's difficult to find veterans who were really worried for their lives. I had a colonel with the Special Forces we're seeing tell me that it is ludicrous to compare the gulf to Pork Chop Hill or the Battle of the Bulge, where guys were dying all around you. Fighting for weeks on end in the jungle, that's combat stress. This was a traffic jam, a picnic compared to that."
Haley's analysis of the stress studies showed that "these studies over-interpreted minimal elevations on psychological screening questionnaires known to be prone to misdiagnosing PTSD in people suffering from a wide range of other conditions. Virtually all of what appeared to be stress actually can be explained as falsely positive errors of measurement. The true rate of PTSD among the veterans is near zero."
The whole stress argument was based on a "colossal mathematical misinterpretation," Haley adds. "And it became national policy that was defended doggedly."
Dr. Matthew J. Friedman, executive director of the V.A.'s National Center for Post-Traumatic Stress Disorder, takes issue with Haley's findings. "Haley's paper confuses the issue of PTSD with stress-related problems in general," Friedman says. "He is saying that the true prevalence of PTSD is zero, therefore stress is of no consequence."
Friedman says that he and his colleagues believe the prevalence of PTSD among Gulf War Vets is between 8 and 10 percent, which mirrors the rate of PTSD in the general public. "If the rate among Gulf War vets were zero as Haley claims," Friedman points out, "then his paper implies that being in harm's way lowers the prevalence of PTSD. And that doesn't make much sense."
Haley published his reanalysis of the stress studies in the November American Journal of Epidemiology. In a news release Southwestern issued at the time, Haley took the opportunity to swipe back at the presidential advisory committee. "Once we and others pointed out problems with the idea that PTSD was common in Gulf War veterans, the committee did not consider the emerging evidence for other causes but instead changed its definition of stress from PTSD to general life stress. The view that general life stress plays an important causal role in chronic illnesses...is a theoretical and popular concept, but it is not supported by the preponderance of scientific evidence."
This is another point on which the V.A.'s Friedman differs. "There is a great deal of evidence that non-traumatic stress has an impact on key biological systems. For Haley to dismiss that literature, in my opinion, means he either is unfamiliar with it or he doesn't understand it."
Haley is willing to concede that stress may be at least a catalyst, if not the cause, of Gulf War Syndrome. Some research indicates that stress might make a person more susceptible to toxic chemicals. A recent Israeli study showed that when rats injected with PB were physically stressed--they were made to swim--the chemical crossed from the bloodstream into the brain, which it does not do under normal conditions.
Haley recently re-examined another group of influential studies, the ones that appeared in The New England Journal of Medicine last year that purportedly found no higher incidence of hospitalization or death within three years after the war among servicemen who went to the gulf and those who didn't.
Haley uncovered two flaws in the hospitalization study, according to a recent lecture he gave at Southwestern Medical School. First, the authors looked only at military hospitalizations. This would skew their results, Haley explains, because the sickest veterans were discharged after the war and could have been seen in civilian hospitals. Second, the study assumed the two categories of veterans were the same. "Who goes to war? The healthiest soldiers. Anyone who had chronic illnesses three years before the war stayed home. If the war hadn't caused any problems, why didn't the soldiers have fewer hospitalizations? Something made the deployed sicker after the war to make the hospitalization rate exactly balanced."
According to Haley's computation, the Gulf War vets had an 8 percent higher hospitalization rate than the soldiers who stayed home. "This is a devastating criticism," he says. "Their study is going down in flames."
The mortality study also found that Gulf War veterans were not dropping dead at a higher rate than non-deployed servicemen. But they did suffer a 48 percent increase in deaths from auto accidents--a fact Haley says might be attributed to brain injury. "If you had dizzy episodes or nerve damage that slowed your reflexes, wouldn't that impair your driving?" he asks.
Some recent developments have bolstered the initial work done by the Texas doctors. In a paper released several weeks ago, Japanese physicians who conducted follow-up studies on the victims of the Tokyo subway sarin poisoning in 1995 found that low-dose exposure did cause long-term neurological damage. Those who suffered very slight symptoms at the time--headaches, burning eyes, runny nose, stomachaches--started developing "significant" balance disturbances more than six to eight months after the terrorist attack.
The Pentagon also found that rats exposed to low levels of sarin developed brain damage similar to that found in humans with memory loss. (The results of this study were published the same month--January 1997--as Haley's, but the Pentagon curiously did not publicize them until months later.) The government is now funding numerous studies on the effects of low-level exposure to organophosphates, and the military is conducting studies on the synergistic effects of exposure to combinations of chemicals.
Haley has finished surveying 400 Dallas-area Gulf War veterans, and the results corroborate his earlier findings linking chemical exposure to three distinct patterns of symptoms. Charles Townsend is in this group of veterans. The thoroughness of Haley's tests and surveys have given Townsend hope that doctors finally may get to the bottom of what ails him.
"He is more upbeat than I've seen him in years," says his sister, Sharon Brewer.
Their studies also indicate that older veterans were more susceptible to neurotoxicity, and Kurt, for one, is concerned that even soldiers with minimal symptoms might get worse as they age. He cites recent studies on Parkinson's disease that show that, in 50 percent of those afflicted, the illness is related to environmental exposures in their early years.
"We potentially could be sitting on a time bomb of neurological illness due to delayed onset," Kurt says.
None of these developments, however, has softened the initial criticisms leveled at the Texas scientists. Phil Landrigan, the White House panel member who wrote the JAMA editorial about Haley's studies, told PBS' Frontline that the work was seriously flawed. Frontline's hour-long documentary on Gulf War illnesses, which aired this January, presented stress as the only credible theory. The program featured Haley in passing, lumping him in with scientists who claim not only to have solved the mystery, but also to have discovered miracle cures. The program failed to point out that, unlike Haley, these scientists have yet to get their results published.
The PBS report caused a split in the ranks of the presidential advisory committee. Rolando Rios, a San Antonio lawyer and Vietnam veteran who served on the panel, told the Dallas Observer he thought the PAC's final report as well as the Frontline piece did Haley a disservice. "I do not think his work should be dismissed out of hand," he says. "I think his work deserves more funding."
As the threat of renewed U.S. military action in Iraq continues, it is unclear whether Haley's findings have influenced the Pentagon to take additional precautions in safeguarding troops from chemical exposures. One Pentagon spokesman said that the military is again issuing PB tablets to the soldiers. Beyond that, details are sketchy. "Making that information known would be like telling what time is the sneak attack," says Maj. Tom Gilroy.
As with Galileo and Copernicus before them, Haley and his UT Southwestern colleagues may be scientists who are simply ahead of their time. Or maybe time will prove them wrong.
Haley remains philosophical. "It's an honest disagreement between scientists who fervently believe their theories are right. It is not an evil plot, as some people believe. There's not a conspiracy to defraud or cheat the veterans. But there may be as many as 100,000 vets not getting help, and the impasse is tragic."
The disagreement between scientists may be honest, but it is far from civil. As Haley concluded in his recent lecture to medical students, "With all the attacks and counterattacks, you can see we are in the middle of a bloody scientific war. And it is about to get bloodier.
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