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Funding continues for illness scientists dismiss

Fifteen years after the end of the 1991 war with Iraq, a Texas researcher is in line to get as much as $75 million in federal funding to press his studies of "Gulf War syndrome," even though most other scientists long ago discounted his theories.[!]
/ Source: a href="" linktype="External" resizable="true" status="true" scrollbars="true">The Washington Post</a

Fifteen years after the end of the 1991 war with Iraq, a Texas researcher is in line to get as much as $75 million in federal funding to press his studies of "Gulf War syndrome," even though most other scientists long ago discounted his theories.

Epidemiologist Robert W. Haley has been trying for 10 years to prove that thousands of Persian Gulf War troops were poisoned by a combination of nerve gas, pesticides, insect repellents and a nerve-gas antidote. With the help of $16 million in past funding obtained by his backers in Congress and the Pentagon, Haley has argued that his "toxicity hypothesis" is the best explanation for the constellation of physical complaints that many veterans reported after returning from the Gulf.

Haley and his supporters, who also include a powerful cluster of veterans and government advisers, are undeterred by the scientific consensus against him.

As recently as September, a panel of the National Academy of Science's Institute of Medicine reached the same conclusion that half a dozen other expert groups had: Gulf War syndrome does not exist. After reviewing 850 studies -- essentially all the scientific literature on the topic -- the 13 scientists wrote that "the nature of the symptoms suffered by many Gulf War veterans does not point to an obvious diagnosis, etiology [cause], or standard treatment."

"Gulf War syndrome" became a catchall name for a spectrum of non-life-threatening complaints that up to 30 percent of the conflict's veterans say they have experienced at some point since the end of the war in 1991. The most commonly cited symptoms are fatigue, memory loss, poor sleep, mood changes, digestive troubles and rashes.

The ground war lasted four days and resulted in 147 battlefield deaths, but almost 199,000 of the 698,000 people who were deployed have since qualified for some degree of service-related disability. Of those, 3,317 people are disabled by "undiagnosed conditions."

From 1994 through 2003, the departments of defense, veterans affairs, and health and human services sponsored 256 studies of Gulf War syndrome, at a total cost of $316 million.

Scientists cry foul
The size, timing and purpose of the latest appropriation has elicited muffled outrage among scientists who say there is little more to gain from pursuing Haley's ideas.

"This is a tremendously egregious misuse of government funding," said Gregory C. Gray, who headed the Navy's Gulf War illness research center in San Diego before retiring in 2001. He now directs the Center for Emerging Infectious Diseases at the University of Iowa's College of Public Health.

"After hundreds of millions of dollars and a decade or better of research, we really haven't made any significant findings," said John R. Feussner, who was VA's chief research officer from 1996 to 2002 and is now chairman of medicine at the Medical University of South Carolina. "What is the chance we will find something now? Not as high as zero."

At VA, people will not talk on the record about the appropriateness of Haley's grants -- almost all awarded outside the usual competitive routes.

"This is a very sensitive topic around here right now, in part because this might be seen as an apparent shift in how VA selects and funds research," said one official, speaking anonymously so as not to offend members of Congress. A former VA official, also unwilling to be quoted by name, was more straightforward: "Everyone is dismayed."

Haley's research was originally underwritten by billionaire H. Ross Perot. It later gained the support of VA's Research Advisory Committee on Gulf War Veterans' Illnesses, on which Haley sat until recently, and of a politically diverse group of legislators that includes Reps. Christopher Shays (R-Conn.), Bernard Sanders (I-Vt.) and Dennis J. Kucinich (D-Ohio).

Haley's chief congressional patron is Texas's senior senator, Kay Bailey Hutchison (R), who chairs the Appropriations Committee's subcommittee on military construction and veterans affairs. A year ago, she inserted an earmark in the 2007 federal budget that will channel $15 million to the University of Texas Southwestern Medical Center, where Haley is a professor and chief of epidemiology. The grant can be renewed four times, for a total of $75 million over five years.

VA cemented the arrangement Nov. 14 when it signed a contract saying UT Southwestern will "conduct and manage research projects in order to answer central questions on the nature, causes and treatments of Gulf War veterans' illnesses," said VA spokeswoman Karen Fedele.

Hutchison twice declined a request to talk to The Washington Post for this article, as did Haley.

Just how much money will go to Haley's research is unknown. Other scientists will be able to apply for funding, but the awarding of grants will bypass VA's usual mechanisms and instead go through "a process established by and headed by the dean of the medical school" at UT Southwestern, Fedele said.

Haley's backers say a lack of focus and money are the chief reasons a cause and treatment for the Gulf veterans' ailments have not been found. Hutchison spokesman Marc Short said the senator "doesn't want people to stop doing Gulf War illness research as long as there are symptoms out there that we don't understand."

The conventional wisdom
Outside Haley's circle, most experts think the syndrome is rooted more in medicine, psychology and culture than in toxicology.

They have concluded that it is the product of a medley of factors, including the stress of the war and the fear that Saddam Hussein might use chemical or biological weapons. For some people -- particularly reservists, in whom the symptoms are more common -- it may be a physical expression of the disruption that deployment caused in their lives. Some of the physical complaints may simply be the ordinary ups and downs of people's health, magnified by public and media attention. Gulf War syndrome may also be the military manifestation of something long seen in civilian medicine: symptoms whose cause is never found despite extensive testing and diagnostic studies.

Haley adamantly rejects that view, especially the stress argument. In three papers published in the Journal of the American Medical Association in January 1997, he outlined six distinct neurological syndromes he identified in several dozen former members of the Navy Reserve "Seabees" construction unit who served in the Gulf. He has spent much of the past decade studying them, focusing on the three most disabling syndromes. For one series of papers, he took 165 measures of neurological function.

Among the things he and his colleagues reported was that in 12 veterans with the most severe complaints, a deep-brain structure called the left basal ganglion was smaller than usual. (The right one was normal.) He also found that some ill veterans tended to have a less active version of the enzyme paraoxonase-1, which breaks down the nerve agent sarin. Veterans with symptoms were also more likely to have abnormal eye reflexes and subtle changes in the daily variation of heart rate. What remains unclear is the significance of these results.

Poisoned on the battlefield
Haley's most controversial claim is that many veterans suffering from the syndromes were probably exposed to a nerve agent during the war.

Nerve gas was released after the war, during the destruction of 816 pounds of sarin and cyclosarin at a storage complex in Khamisiyah, Iraq, in March 1991. The Defense Department modeled the "plume zone" from this explosion and in 1997 notified 98,910 veterans that they may have been briefly exposed downwind of Khamisiyah. That number was later increased to about 102,000.

Haley's backers consider those letters proof that the veterans were exposed to nerve gas. That is the view of James H. Binns Jr., a retired businessman and former deputy assistant secretary in the Defense Department who chairs the VA Gulf War illnesses research panel. "There is no contradicting that there was low-level exposure to sarin gases as a result of destruction of Iraqi weapons depots," he said in an interview.

Defense officials, however, have always been careful to talk of "potential exposures," not definite ones.

No one doing the demolition reported any symptoms of sarin poisoning at the time. Neither did anyone in the plume zone. Few doubt that air containing the vaporized compound drifted over troops, but there is no evidence that anyone actually came in contact with sarin. Furthermore, the Seabees Haley studied were far outside the plume zone, as were most other soldiers who later complained of persistent symptoms. For sarin to be part of the mix of toxins causing Haley's syndromes, there would had to have been other releases -- something experts say is extremely unlikely.

"I haven't spoken to anyone in the military or in intelligence who believes it is credible that there was deliberate use of sarin and nobody noticed," said Simon Wessely, a psychiatrist and leading British researcher of Gulf War illness.

Evidence that low-level exposure to sarin can lead to chronic illness is equally sparse.

Brain-wave tracings of monkeys exposed to low doses sometimes show changes, although the animals' behavior does not change. Rats exposed to low doses of nerve agent and pesticide perform worse in mazes, but most are back to normal in three months. The relevance of those findings to human illness that includes symptoms as diverse as joint pain and chronic diarrhea is unknown.

The few studies of people who were exposed and survived are also not very enlightening. American and British soldiers exposed to non-fatal doses of nerve gas as human guinea pigs decades ago suffered no chronic illness, but some survivors of two sarin attacks by terrorists in Japan in the 1990s reported tiredness, headaches and vision changes up to five years later.

There is also little evidence that simultaneous exposure to toxins -- even without nerve gas -- has lasting effects. A study published in October found that, properly used, DEET insect repellant, the anti-nerve-gas pill pyridostigmine bromide and insecticide-impregnated uniforms did not cause physical or mental impairment.

Overall, most scientists who have investigated the question share the same conclusion: The chance that thousands of people suffered poisoning they did not recognize at the time, and are now ill with a disease that has never been seen before, is close to nil.

But while the scientific establishment has always been skeptical of Haley's findings, 10 years ago Pentagon officials saw them as possibly the key to the mystery of Gulf War syndrome.

Support lost, and regained
"In my opinion, Haley was researching the very essence of Gulf War illness," recalled Bernard Rostker, an economist who headed the Defense Department office devoted to that subject. In 1997, his office provided $3 million to Haley out of discretionary funds when the Dallas scientist failed to win a grant through the military's usual competitive funding mechanism.

They money was to give Haley a chance to confirm his findings in a larger, representative sample of veterans. But he did not do that, which became clear when Rostker toured the Dallas research ward in 1998 and encountered only previously examined veterans.

"I thought Dr. Rostker was going to blow a gasket right then and there," recalled Michael E. Kilpatrick, deputy director of deployment health support at the Pentagon, who was on the visit.

Haley eventually did test 336 additional veterans reached through the Dallas VA hospital, identifying 29 with one of his six syndromes. Among the 249 Seabees he had examined earlier, he found 25.

"Basically, Haley stiffed the government," Rostker said recently. He refused to give Haley more money, and Hutchison began inserting budget earmarks to fund Haley's work.

Pentagon and VA officials still say the crucial question that needs answering is whether Haley's syndromes can be found in a larger group of veterans.

To that end, the government is spending more than $10 million to ask a random sample of 10,000 veterans about symptoms, and to study the brains of several hundred who are clearly ill, using MRI scanners. Along with the new appropriation, that will extend efforts to examine Haley's theory to almost the 20th anniversary of the conflict.