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By Richard Currey

On September 12, the Institute of Medicine (IOM), a division of the National Academy of Sciences and among the nation’s pre-eminent authorities on health and medicine, published the final installment in its major report. Six years in the making, Gulf War and Health evaluated numerous variables—including toxic chemical agents, known environmental hazards, preventive medicines, and vaccines—that might have contributed to the condition generally known as Gulf War Syndrome (GWS).

The IOM report was originally mandated by Congress in 1998 in response to growing concerns that there might indeed be an identifiable medical condition associated with service in the Gulf War. There was little doubt that Gulf War veterans were experiencing an array of physical and psychological problems at higher rates than might be expected. The IOM’s goal was to evaluate the scientific literature to determine what causative agent or agents might be implicated in GWS.
The 16-member GWS panel, chaired by Dr. Lynn Goldman of Johns Hopkins’s Bloomberg School of Public Health, found that although Gulf War veterans reported “significantly more symptoms of illness than soldiers of the same period who were not deployed, studies have found no cluster of symptoms that constitute a syndrome unique to Gulf War veterans.”

Headlines promptly appeared around the country that suggested it was all over for GWS—“No ‘Gulf’ Syndrome” (New York Newsday), “Report to VA Rejects Gulf War Syndrome—Says Range of Ills Not Unique to 1991 Conflict” (Associated Press), “Report Dismisses Idea of Gulf War Syndrome” (Cincinnati Post). But most news coverage, however, went on to explain that “no Gulf War Syndrome” was not the same as no illness among Gulf War veterans. While a few pundits took the opportunity to suggest that GWS was a diagnosis overdue for debunking, news outlets did not tend to dismiss GWS out of hand.

Meanwhile, veterans service organizations and advocates took the IOM to task for not assuming a more pro-active stance on behalf of veterans.

This series of events is not new. Each time an installment of the IOM report has appeared (there have been four since 2000), a flurry of headlines trumpet the fact that the nation’s official Gulf War panel could not confirm the existence of GWS. Veterans organizations grumbled. And affected veterans, caught in the middle, struggled with their symptoms and with VA compensation guidelines.

The IOM panel, however, has been quite clear all along about the challenges in evaluating existing GWS evidence. Pre-deployment baseline medical data was often sketchy or incomplete, and deployment medical records varied from barely adequate to absent. And then there were, according to the IOM report, “limited examinations of returning personnel” despite a federal law mandating otherwise. The report concluded that “because symptoms vary greatly among individuals, they do not point to a syndrome unique to these veterans.”

By the same token, the IOM report noted that Gulf War veterans have and continue to experience medical symptoms not otherwise explained, including elevated rates of Lou Gehrig’s Disease (a degenerative nervous system disorder leading to paralysis and death), anxiety, depression, and substance abuse.

Paul Davidson, Executive Director of the National Gulf War Resource Center (www.ngwrc.org) maintains that while the IOM report is well-intentioned and strives for scientific clarity, the report revisits what has been long established—GWS is a medically unexplained phenomenon that may be connected to a host of different variables, including pre-deployment health factors, and does not lend itself to “cookie-cutter” diagnosis.

“We know this already,” Davidson says. “The VA knows it. Vets know it. This IOM report breaks no new ground, reaches no new conclusions, and uses scientific resources that appear to be dated. We might have expected a bit more given the amount of time invested in this study. Beyond that, and perhaps most damaging, is that the report is presented in a way that seems ready-made for misunderstanding and confusion about the true nature of GWS.”

Misinterpretation of the IOM’s conclusions looms large among Davidson’s worries. In a sound-bite world, he says, more complex messages fall quickly by the wayside. “The fact that media outlets can distort or misrepresent this issue to the public, to legislators, and to veterans is very disturbing.”

In a press release issued on the heels of the IOM report, The NGWRC noted that “on page 214 of the [IOM] report, [it] states that there is no symptom complex peculiar to deployed Gulf War veterans.

“[However], the previous 12 pages of text and following four pages summarize a number of studies published over the last ten years which analyze ‘Unexplained Illness,’ concluding that about 30% of Gulf War Veterans now experience or previously experienced this condition.” This is, the NGWRC states, double the rate of occurrence among non-deployed veterans of the same period.
Cheyne Worley, an Army supply sergeant in the Gulf War and current NGWRC President, said that the IOM report “clearly documents that three out of ten [Gulf War veterans] are sick,” and that this illness “is most likely related to service in the Gulf.” Worley contends that the IOM and the media have turned GWS into a semantic argument over “Gulf War Syndrome” versus “unexplained illness [while] overlooking the fact that a generation of veterans are suffering with illnesses that are clearly service-connected.”

What is often lost within the long controversy over GWS is a deeper matter, a scientific challenge of the first order. GWS is a medically unexplained illness. While it joins a number of other such entities, it is uniquely related to military service in harm’s way, a particular generation of veterans, and is subject to both the circus of national media and the shifting tides of politics.

Medically unexplained symptoms (known as MUS among doctors and scientists) present a conundrum. The family of illnesses that comprise MUS, including headaches, chronic muscle pain of no apparent origin, back pain, rashes, depression, and persistent fatigue, are, quite simply, impossible to diagnose in conventional ways. Unlike, for example, heart disease, rheumatoid arthritis, or pneumonia, MUS-related illnesses have no established causes and no straightforward approaches to testing, diagnosis, and treatment. The military is a classic incubator for these enigmatic conditions. MUS have proliferated among service members, notably among those deployed abroad or in combat theatres. Alleged culprits include Agent Orange and other defoliants, industrial chemicals and heavy metals that can be found with any army in the field, depleted uranium, elevated levels of background radiation, the anti-malarial drug mefloquine, other prescribed medications, and pre-deployment vaccines.

ut here the discussion runs into the misty vagaries of possibility and potential—the great landscape of “maybe.” Could elevated levels of background radiation contribute to illness in some people? Maybe. Might low-grade infections serve as initiating events for what, years later, emerge as vague but persistent symptoms? Maybe. Can environmental exposures trigger illnesses that manifest differently in individuals of different genetic make-up or ethnic background? Possibly. Are some vaccines related to serious illness in some people? Yes, but only some vaccines in some people, and identifying these people prior to receiving a vaccine is difficult.
The history of medicine has been a long journey from a world where, at one time, all human maladies (other than injuries) were medically unexplained. From the time of Hippocrates, medical science has moved through countless theories explaining all manner of illnesses, conditions, and syndromes. As new knowledge emerges, old ideas are revised, improved—or discarded.

But just as human bodies change over time and the environments we contend with grow ever more complex, MUS-related illnesses will likely always be with us. It seems reasonable that MUS are new variants on old problems, what doctors refer to as “uncommon presentations of common problems.” Without research to support one treatment against another, management of MUS is sometimes simply a conscientious doctor’s best shot at offering relief.

Within this context, military and VA physicians attempt to evaluate GWS and other MUS-related medical syndromes. It’s a complicated stew, not readily explained in a news sound-bite, a short newspaper piece, a CNN crawl, or a press release.

In the winter of 2003, Charles Engel, an Army physician, made a presentation to the Armed Forces Epidemiological Board. Engel, the Director of the Deployment Health Clinical Center (DHCC) at Walter Reed Army Medical Center, was seeking advice on improving deployment-related health care (including ways of collaborating with the VA medical system). Col. Engel launched his presentation by observing that post-war and post-deployment syndromes have, in fact, been around a long time. “Poorly understood war syndromes have been associated with armed conflicts since at least the Civil War,” he told the Board, and have consistently involved “fundamental, unanswered questions.”

Getting to the bottom of these unanswered questions helps define the work of the DHCC. But the evaluation of unexplained symptoms, Engel observed, can be waylaid by “the large and problematic gap between what is proven and what is plausible” in medical practice. The horns of this dilemma continue to stymie doctors treating veterans, those seeking care, policymakers, and advisory organizations like the IOM.

Engel has been director of the DHCC since the mid-1990s and, from the start, brought a strong interest in MUS. In fact, DHCC was launched in 1994 in response to the emergence of GWS. “In the wake of the Gulf War we were looking at 15-20 percent of soldiers returning with complaints and concerns that went undiagnosed,” Engel told me when I visited with him in his Walter Reed office. “We looked at this situation and asked ourselves: What if we focused on this group and tried to get at what was ailing them?”

In addition to being a physician and researcher, Engel is a Gulf War veteran. “I felt a particular sympathy for other vets who had been where I had been and exposed to what I was exposed to. Gulf War syndrome is a case of people suffering while we waited for diagnostic criteria to be officially described. And, obviously, that wasn’t happening very quickly.”

Today, there are care guidelines in place for DoD and VA healthcare providers that assist in managing individuals with hard-to-diagnose problems. “Medically-
unexplained symptoms are not being ignored,” Engel said. “Not at all. But for individuals suffering with these problems, it can be very frustrating.”
The National Library of Medicine lists nearly 500 citations on Gulf War illness, dating back to the early 1990s. A quick look at one recent study of a group of 2,189 Gulf War-era veterans highlights the difficulties facing doctors working with Gulf veterans.

A report in the Annals of Internal Medicine (June 7, 2005) investigated “various symptoms after deployment,” noting that “the long-term prevalence of symptoms and association with deployment remains controversial.” The researchers studied 12 conditions, including chronic fatigue, rashes, chronic indigestion, high blood pressure, lung disease, joint pain, and quality of life complaints.
Four of the twelve conditions were found to be more prevalent in the deployed veteran group (fatigue, muscle aches, rashes, and indigestion), and quality of life reporting was essentially equal between the two groups. Based on this information, the researchers concluded that the “health of deployed and nondeployed vets of the Gulf War era is similar.”

Another aspect of the science behind GWS is the case of Texas researcher Dr. Robert Haley, whose Gulf War Illness and Chemical Exposure Research Center received $15 million in funding through the efforts of Sen. Kay Bailey Hutchison in late April. The funding, however, is an “earmark” on this year’s VA budget, meaning the funds are essentially a direct cash infusion that bypasses direct VA oversight. This is apparently the first time that the VA will fund a research initiative outside its network (Haley’s program is based at the University of Texas Southwestern Medical Center in Dallas).

Haley, who has referred to himself as the discoverer of GWS, believes the syndrome is a result of brain and nerve damage due to exposure to low levels of nerve gas and other materials toxic to the nervous system. This is not unreasonable, and numerous scientists, including several at the VA, accept the idea as worthy of further investigation.

Some prominent researchers question the validity of Haley’s research. The head of Britain’s military health research center, Simon Wessely, told the magazine Science that Haley’s “particular avenue of research…is not one that has found much favor with the scientific community.

Further, the body of research to date offers less than convincing support for the theory.

Animal studies have yielded conflicting results. MUS and GWS experts disagree about the implications these results carry for humans—if any. And the IOM, in an earlier report on the effects of sarin gas, found “inadequate/insufficient evidence” to link the gas (a nervous system toxin) to any specific or recurring illness in Gulf War veterans.

Haley and Sen. Hutchison do not contest the reservations in the scientific community, but they point to what they feel has been slow and ineffective GWS programs at the VA. Haley acknowledges that the enigma of GWS is far from solved, but “if we continue at the current rate, it’s going to be 50 years before we help [Gulf War vets].”

In addition to the DHCC for active-duty personnel, the Department of Veterans Affairs operates two War-Related Illness and Injury Centers (WRIISC, pronounced “risk”). Located at the VA medical centers in Washington, D.C., and East Orange, N.J., the Centers offer second opinions for vets with “difficult-to-diagnose, war-related illnesses and injuries.” WRIISC-DC provides comprehensive evaluation of “the medical problems of combat veterans with debilitating symptoms that remain unexplained after medical examinations by the local VA medical center.”
Dr. Han Kang, director of WRIISC-DC, is a member of the VA work group reviewing and evaluating the IOM GWS report, and therefore said he would defer any personal perspectives on the IOM study at this time. But, he added, “This is not the final word on Gulf War illness. The IOM committee itself made several recommendations for further research.”

The mission of the WRIISCs, Dr. Kang said, is “to provide health-related services to veterans who served in a theater of combat operations or in combat support, and who subsequently have suffered from difficult to diagnose disabling illnesses. Veterans should be evaluated first by his or her VA primary care physician, then the physician can refer the veteran to the WRIISC.” Evaluation is multidisciplinary and focuses on each veteran’s particular problems. The WRIISC-DC has an in-patient National Referral Program, according to Dr. Kang, and recommends that any veteran who suffers from an unexplained illness or a difficult-to-diagnose disabling illness should see a VA primary care physician. (That primary care provider is responsible for the referral—veterans cannot refer themselves to the WRIISC centers. Nor can they be referred by doctors outside the VA system.)

“Veterans must be medically and psychologically stable for travel,” Dr. Kang said, “and participation in a fairly intense two-to-five day program” at a WRIISC center. Diagnoses are made when possible, and, in all cases, the referring medical center receives recommendations for management of the veteran’s medical problems.
Lynn Goldman, chair of the IOM study group, told the Cincinnati Post that there is “no unique pattern of symptoms. Every pattern identified in Gulf War veterans also seems to exist in other veterans, though it is important to note the symptom rate is higher.”

So GWS, like Agent Orange-related illness before it, has become a problem knocked around from one agency to another, one politician to another, and from one VA secretary to the next. The mysterious nature of GWS alone makes it a legislative and medical hot potato. Policymakers, scientists, and doctors all prefer clear guidelines and consistent outcomes, but that’s not the way it is with GWS.
The story of GWS is clearly “to be continued,” a fact that the IOM report underscores. While many decry this as the same old story, at least some researchers remain engaged by this problem and at least some federal money has been and continues to be targeted at this vexing problem.

Under it all a philosophical war rages. Do we accept responsibility for the health of all our veterans, across the board? Some would certainly argue so. Many feel that service to the nation, particularly if injured in the line of duty, earns a veteran the nation’s long-term support. A few senior VA physicians I’ve spoken to would—off the record—agree. But they were all quick to point out that funds are not endless and there is much competition for available monies among not only scientists but different vets groups representing various kinds of ailments. Then there’s the politicization of veterans issues, which tends to anoint certain problems or efforts while ignoring others.

Medically unexplained symptoms are not unique, but MUS-related illnesses like GWS and Agent Orange predominate among military and ex-military populations, bringing a long history, a large literature, and many guidelines for care. Shouldn’t we accept the fact that many deployed veterans will suffer from medically unexplained symptoms that defy scientific rationale, and move to fully include these sorts of illnesses in a portfolio of compensable service-related illness and disability?

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