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The Mystery Diseases: Seeking the Cause of Gulf War Illness, Chronic Fatigue Syndrome, and Fibromyalgia

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By Matt Crenson (AP)

To veterans it is a cruel mystery: Which of the countless pesticides, pollutants, microbes and poisons they encountered during the Persian Gulf War has left one in seven of them sick with a debilitating and persistent illness?

On Capitol Hill it is an outrage: Why, after spending more than $200 million on hundreds of studies, can’t the Pentagon and the Department of Veterans Affairs determine what pollutant or microbe is causing the panoply of symptoms known as Gulf War illness?

Most scientists who have studied the chronic health problems of Gulf War veterans say they have the answers to both questions: There is no environmental toxin or infectious agent to blame. A decade of research overwhelmingly points to another cause – stress.

Yet many veterans and their advocates don’t believe it.

“I know a lot of people who are sick, and stress is not what’s killing them,” said Stephen L. Robinson, who served in special forces during the Gulf War and now heads an advocacy group for ill veterans. “Stress is the last thing we should be looking at.”

Part of the problem, many Gulf War illness experts say, is that most people have the wrong idea about stress. Many veterans think experts are telling them their illness is all in their heads, that they are imagining their symptoms.

Actually, scientists say, stress causes real, physical problems. Hormones released into the bloodstream when a person is under stress can cause physiological changes that linger long after life returns to normal, harming both nervous and immune systems.

Researchers say even the toughest soldier is not invulnerable.

“The mind and body are inextricably linked,” said Dr. Philip J. Landrigan, an epidemiologist who served on a presidential advisory committee that concluded stress caused Gulf War illness. Americans, he said, need to get beyond the false notion that stress-related illnesses are somehow unmanly or shameful.

Like a lot of veterans, Robinson remains unpersuaded. Before becoming executive director of the National Gulf War Resource Center, he worked for two years in the Pentagon office charged with investigating Gulf War illness and “didn’t feel good about what I had seen.”

It appeared to him, he says, that researchers studying the possibility that stress was the cause “had a predetermined outcome in mind.”

So he has joined many veterans and their advocates, including a handful of scientists, in insisting that more studies be done.

Congress has responded by continuing to authorize millions of dollars for research into alternative causes of Gulf War illness

– money that many scientists say is wasted.

There is often a culture clash when science and politics try to work together. Scientists seek objective truth by collecting data and testing hypotheses. Politicians usually try to make decisions based on their constituents’ desires.

That veterans deserve to know what is making them sick is not disputed. But what should the government do now that scientific research has produced evidence that leaves many veterans resolutely dissatisfied?

Data show that Gulf War veterans are no more likely to die or be hospitalized than their peers who never served in the region. Their rates of cancer and other serious diseases are no higher than expected in 700,000 people of their age and background.

The VA did announce in December that Gulf War veterans are twice as likely to suffer from Lou Gehrig’s disease as their peers, but many experts question the finding because no scientific paper has been published to back it up.

Even if it is borne out, says University of Iowa epidemiologist Dr. Gregory Gray, the Lou Gehrig’s disease finding does not topple stress as the most likely cause of Gulf War illness because it applies to only a few dozen people. There could always be a small subset of veterans with a single well-defined disease that was caused by an infectious or toxic exposure during the Gulf War. But that would not explain what is making thousands of other veterans sick.

Still, no one disputes that Gulf War illness is real.

Researchers have verified that veterans of the Persian Gulf war are more likely to suffer from a range of chronic symptoms including memory and thinking problems, fatigue, joint pain, depression, anxiety, insomnia, headaches and rashes.

Marine Capt. David Fournier, for example, has suffered mysterious heart problems and arthritis since serving in the Gulf. “I served in Vietnam too, and I came out of there healthy,” he said. “For me to be stricken down with heart failure at 40 years old just did not make sense.”

Gray, who until recently studied Gulf War illness at the Naval Health Research Center in San Diego, says “there’s no doubt that the Gulf War veterans … report higher levels of symptoms.”

But why? In the 11 years since the Gulf War, myriad possibilities besides stress have been advanced, investigated and found wanting.

Government, university and independent investigators have looked at pesticides, parasites, insect repellents and pills the troops took to protect themselves from chemical attack. Also examined: Contaminated vaccines, infectious bacteria, depleted uranium ammunition and smoke billowing from oil wells that were set alight by retreating Iraqi troops.

Hundreds of scientific papers have been published on potential causes of Gulf War illness. A number of expert panels have examined the evidence. The conclusion: No firm evidence has been found ascribing Gulf War illness to anything other than stress.

In 1995, the Pentagon revealed that U.S. troops who destroyed an Iraqi ammunition dump in March 1991 might have been exposed to trace amounts of sarin nerve gas. Initially, some thought this might explain Gulf War illness. However, epidemiologists found that troops who were near the ammunition dump during the weapons destruction were no more likely than other Gulf War veterans to be hospitalized or die in the years following the war.

In fact, the estimated 100,000 sufferers of Gulf War illness have no single thing in common except that they all became ill after serving in the same war. Symptoms have been reported by veterans who were stationed thousands of miles apart and who performed widely differing duties. Green Berets who sat in foxholes deep behind Iraqi lines have reported many of the same symptoms as the pilots who flew high above them.

This presents a problem for anyone trying to tie Gulf War illness to a specific toxin or microbe. Experts say it would have been virtually impossible for such a wide cross-section of troops to have been exposed to the same thing.

The multitude of symptoms veterans report also make it extremely unlikely a toxin or microbe is involved, most experts say. A microbe or toxin would produce one well-defined illness.

On the other hand, researchers say, stress is known to produce nearly all the symptoms reported by Gulf War veterans. It has been implicated in cardiovascular disease, immune system disorders, chronic headaches, memory and cognitive problems. Some researchers believe it is the cause of chronic fatigue syndrome and fibromyalgia, two so-called “mystery diseases” that are similar to Gulf War illness.

Stress might seem an unlikely cause of Gulf War illness because U.S. troops did not suffer high casualties and most saw little heavy combat. But U.S. forces spent six tense months in the region preparing to invade Iraq, all the while hearing rumors about Saddam Hussein’s chemical and biological weapons and reports of the military prowess of his elite Republican Guard. Sirens warning of chemical attack repeatedly sent troops scrambling for gas masks. Only later were the warnings found to have been false alarms.

Dr. Jeffrey Sartin, a former Air Force physician who says he saw about 400 patients with Gulf War illness, says he always asked them the details of their war experiences.

“Many, many times they told me about how on edge they were,” said Sartin, who is now an infectious disease specialist at the Gundersen-Lutheran Medical Center in La Crosse, Wis.

Studies show that symptoms of Gulf War illness are most frequently reported by those who had particularly stressful war experiences. For example, researchers from the Oregon Health & Science University reported in December that veterans who sought medical care during the war, who were directly involved in combat or who endured extreme heat during the Gulf War were more likely to report chronic health problems after it ended.

Soldiers who served as mortuary workers – regarded as a particularly stressful duty – have also reported significantly more Gulf War illness-type symptoms than other troops, according to a study performed at the Uniformed Services University of the Health Sciences in Bethesda, Md.

A study published in 2001 by researchers at the Portland Veterans Affairs Medical Center in Oregon found that those who report Gulf War illness show “highly significant and compelling evidence of psychological distress” based on 11 different tests designed to measure stress.

And a recent British study of war pension files going back to 1872 found evidence for ailments similar to Gulf War illness among veterans of every major conflict since the Boer War.

“I think there is enough data that stress is a logical explanation,” said Dr. Joyce Lashof, a University of California-Berkeley psychiatrist who headed a presidential commission on Gulf War illness during the 1990s.

Stress, experts say, can affect different people in different ways. It can wear down the immune system, making the body more vulnerable to infections. Furthermore, hormones such as cortisol and adrenalin, released during stress, can overstimulate the immune system, causing long-lasting problems including headaches, fatigue, joint pain and other problems.

“Stress may tilt the balance toward inflammation,” said Dr. Andrew H. Miller, director of the Mind-Body Institute at Emory University in Atlanta.

Treating these problems may require a combination of therapies including anti-inflammatory drugs, physical therapy, counseling and antidepressants.

Although most Gulf War illness experts say there is little evidence that large numbers of troops encountered dangerous chemicals or microbes, many veterans and politicians charge the government has willfully ignored the possibility.

“They’re going to deny it tooth and nail,” said Fournier, the retired Marine. He believes an ingredient used in the anthrax vaccine he received before the war caused his heart problems and arthritis.

He was unswayed by a National Academy of Sciences study released in March that declared the anthrax vaccine safe and effective.

In continuing to approve funds for research into that and other theories, Congress has sometimes circumvented the normal scientific peer review process through which panels of government scientists decide how to allocate federal research money.

For example, former Rep. Robert Livingston, R-La., now retired, attached $3.4 million to the 1996 defense budget to investigate the theory that Gulf War illness is caused by infectious bacteria.

Sen. Kay Bailey Hutchison, R-Texas, has earmarked a total of $10 million in the last two defense budgets to establish an independent research institute at the University of Texas Southwestern Medical Center so that the theory on toxic chemicals can continue to be studied.

Some congressional skeptics of the stress explanation repeatedly refer to a connection between toxic exposures and Gulf War illness as if there were abundant evidence to support it. At an October 2000 hearing, for example, Sen. Arlen Specter, R-Pa. asserted that “there’s a pragmatic causal relationship between exposure to these toxic substances and all of these ailments.”

And Rep. Christopher Shays, R-Conn., demanded during a January hearing that government scientists explain why their research had come up with so few satisfactory answers compared to the work of a few maverick scientists.

“There’s a recognition that the private sector has been doing a better job than the public sector in getting a handle on this,” he said in a recent interview.

That sentiment resonates so well in Washington that government researchers have sometimes reluctantly agreed to test treatments they doubt will work. One such study, a $12 million test to determine whether the antibiotic doxycycline can cure Gulf War illness, has just been completed.

The test was initiated in response to studies by Garth Nicolson, who runs an independent research laboratory in Huntington Beach, Calif. Nicolson believes that Gulf War illness is caused by a poorly known bacterium called Mycoplasma fermentans.

In a 1995 letter to the Journal of the American Medical Association, he said that he had cured a number of patients of their infections, and thus their Gulf War illness, by giving them doxycycline. Soon, there were anecdotal reports of several doctors at veteran’s hospitals successfully treating Gulf War illness patients with doxycycline. Nicolson began testifying before Congress about his work.

Dr. John R. Feussner, chief research and development officer for the Department of Veterans Affairs, often appeared at the same hearings to rebut Nicolson’s approach. Congress chose to fund a definitive doxycycline trial.

The results of the study have not been released in a scientific journal, but Feussner indicated in recent congressional testimony that the treatment was ineffective. Nicolson disagrees, claiming that government scientists rigged the study.

Although the evidence for stress is strong, the search for alternate explanations is certain to continue. The Clinton administration was often criticized by veterans and their advocates for dismissing veterans’ illnesses, but President George W. Bush is perceived as more sympathetic to continuing the research.

In January Bush’s Secretary of Veterans Affairs, Anthony J. Principi, appointed yet another committee on Gulf War illness. Its job is to advise the government on the direction of future research, and its 12 members, several sources say, were chosen specifically because they reject stress as the cause.

“Gulf War veterans have waited too long for answers to many of their questions,” Principi said.

Dr. Robert Haley, a researcher who thinks Gulf War illness was caused by exposure to toxic chemicals, is among the members. The committee, he said, aims “to solve the problem instead of trying to show that this wasn’t anything.”

This kind of talk exasperates Lashof, whose committee concluded more than five years ago that stress caused Gulf War illness. “Stress has important physiologic effects,” Lashof says. “The mind and body are not two separate organisms.”

Copyright 2001 Associated Press

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