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APRIL 8, 2021 | KELLY KENNEDY
The science is clear and treatments are available now. Everyone—advocates, researchers, and officials alike—say there’s reason to expect even more progress, and more solutions, soon. But for decades, the Department of Veterans Affairs has focused on data collection that experts say will not increase health care outcomes and has ignored study after study as 250,000 veterans continue to suffer symptoms that make it impossible to lead healthy, pain-free lives.
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As veterans returned to Fort Devens, Massachusetts, after Operation Desert Storm, Kimberly Sullivan started seeing symptoms that startled her:
Stomach problems. Headaches. Extreme fatigue. Muscle pain. Memory problems. Joint pain. Respiratory issues.
“Here are our veterans in their 20s and 30s, trying to come back from a deployment and trying to go back to full-time civilian work and go to school on the GI Bill and raise a family,” Sullivan said. “And they should have been able to do all that—and more—at that age. And it was very clear that many of our veterans were having difficulty with that.”
Sullivan worked with veterans as a neuropsychiatrist through Boston University’s partnership with Veterans Affairs. The doctors working with veterans knew from the beginning that something was wrong—they just didn’t know what it was, she said.
“Initially, the question was, was this a stress-related disorder—was this post-traumatic stress disorder?” Sullivan told The War Horse. “And it became clear relatively quickly that that was not the case.”
Early on, everyone had a theory about what caused the cluster of symptoms known as Gulf War illness: Vaccines. Depleted uranium. Sand fleas. Oil fires. Some things have been ruled out, like the depleted uranium. Others didn’t make sense, because not everyone rolled into Kuwait, where the oil fires raged, and not everyone encountered sand fleas. And the neurological symptoms were puzzling.
The doctors, as well as veterans’ advocates, could also see, almost immediately, that having a lot of symptoms and a lot of possible causes would make it easy to obfuscate the real issue—and avoid paying for the disability benefits of as many as 250,000 troops.
The problem seemed obvious, even to a group of scientists known for not jumping to conclusions. In the early 1990s, as the Boston researchers and doctors talked to sick veterans, they started to see a trend: chemicals, specifically acetylcholinesterase (AChE) inhibitors.
It started with the DEET cream, which troops used to protect themselves from insect-borne illness: AChE inhibitor. Then, as the war geared up and fear grew that Saddam Hussein would hit U.S. service members with nerve agent, ground troops took pyridostigmine bromide—a drug approved for treatment of myasthenia gravis but experimental as a nerve agent blocker: AChE inhibitor. They washed their laundry, often by hand, with another pesticide, permethrin: AChE inhibitor. And then, as troops moved into Iraq, the United States blew up containers filled with sarin gas: AChE inhibitor.
“Our Gulf War veterans really had a unique toxic soup of exposures—of similar types of chemicals,” Sullivan said.
With each slather of cream or pill taken, the troops increased their doses.
Sullivan, with Roberta White leading a team as the head of the neuropsychology programs at Boston University and VA Boston Medical Center, began to look at whether the chemicals could be causing the illness.
“We’ve come to see that Gulf War illness is related to these exposures,” Sullivan said.
Acetylcholine sends the messages that tell your smooth muscles to contract, your vessels to push blood, your tears to flow, and your heart rate to slow. It also makes sure food moves through your gut, enables you to learn and remember, and sends messages to the muscles that control the airways in your lungs.
The stress of battle, wonky immune system response after exposure to smoke and dust, and high heat levels may have increased the problems for some people, but ultimately, those factors did not matter: The research shows exposure to AChE inhibitors causes the series of symptoms experienced by Gulf War veterans, Sullivan said.
When the researchers realized those acetylcholine messages were not getting through for veterans who had served in Desert Storm, Sullivan said they coined a term more recent veterans may be familiar with: toxic wounds.
But even though the researchers say they suspected early on what caused Gulf War illness, three decades’ worth of frustrations followed, reading like conspiracy theories from a crime novel: misleading claims from Veterans Affairs that the veterans’ issues were psychological rather than physical; VA officials’ refusals to look at animal research or research that didn’t include a defined dose of toxins—a requirement researchers classify as impossible; the government releasing the information five years after the fact that a cloud of sarin gas had made its way to the troops; and, to this day, an acrimonious relationship between advocates for the sick veterans and VA that includes battles over even the name of the series of ailments that struck the veterans: Gulf War illness.
War planners for the United States projected as many as 40% of their troops would be lost in battle. The losses were much lower: 148 Americans were killed in action, with another 145 losses to nonhostile actions, such as vehicle accidents. But as veterans returned home from the Gulf War in 1991, as many as one-third of them—approximately 250,000—developed symptoms of Gulf War illness. There was no known cure, just lives filled with bouts of pain and exhaustion so extreme that some veterans spent those days in bed. There were rashes and debilitating headaches. There were brain cancers.
Gulf War illness has similarities to fibromyalgia and chronic fatigue syndrome. And, just as people who deal with those illnesses have fought for validation, sick veterans continue, 30 years later, to fight to prove service connection for disability benefits for an illness that, until recently, couldn’t be physically seen, with 80% of their claims being disapproved, as well as fighting to show the symptoms are physical—not psychiatric.
Their struggle serves as both a portender of what the Post-9/11 burn pit veterans of Iraq and Afghanistan would face, as well as a repeat of what the Vietnam veterans continue to battle: a history of denying there is a problem, creating obstacles to research, and denying claims until another group of veterans dies off. Veterans advocates call this process “delay, deny, until they die.”
Still, just as with the medical advancements made for war—prosthetics and blood-staunching bandages and brain injury tests—the treatments, some already in use, for Gulf War illness may also help those who suffer with everything from fibromyalgia to multiple sclerosis to Alzheimer’s, all of which may be tied to brain inflammation.
And the advocates, researchers, and VA officials all say it’s time to move forward: to fix the disability claims issue, to celebrate research that will soon produce more treatments and possibly biomarkers for diagnosis, to work together for future generations of veterans.
“We can’t go back in time,” Peter Rumm, director of pre-9/11-era environmental health services at VA’s Post-Deployment Health Services, told The War Horse. “All we can do is go forward. And we’re going forward. We’re trying to do a lot of research and a lot of therapy, and if those things come about, veterans will be served better.”
After years of funding in spite of the fighting, new research is coming that may provide relief for veterans sick with Gulf War illness, as well as for other diseases where both the cause and the cure remain mysteries.
And as a new administration settles into the executive offices, some see hope for veterans past and future in a president who believes his son may have died from a war-zone exposure, as well as politicians from both sides of the aisle who say they support research and benefits for veterans exposed to toxins in war zones.
“I do think the current administration has a vested interest given that they personally have suffered from military toxic exposures and losing family members,” Sullivan said. President Joe Biden has said he wonders if his son Beau’s glioblastoma, as well as his death, came about after exposure to burn pits while he served in the Army. “I think that brought it home, that this is an issue that really needs to finally be taken much more seriously,” Sullivan said.
That connection led to an election campaign plan that included making it easier for veterans to get disability benefits after exposure to burn pits or environmental toxins, as well as increasing research money by $300 million to look at both toxic exposures and traumatic brain injuries.
That commitment appears to have already seeped down.
“Our leadership, the current administration, is meeting with senior leaders and is interested in military exposures,” Rumm said. He also said that, at his level, “We’re committed to doing whatever needs to be done.”
And 30 years after a three-day ground war, Sullivan has more good news about treatments that can be used now by the hundreds of thousands of veterans sick with Gulf War illness.
‘It’s Just Been My Normal’
Angela Menard expected to die in the Persian Gulf.
A medic with the 2nd Armored Division, she knew exactly what the troops were expected to face during Operation Desert Storm. “We were hearing that there were likely to be heavy casualties,” she said. “And we were medical units, so we were preparing for chemical attacks.”
They practiced treating people with chemical injuries, as well as with biological weapon injuries. “We also watched a video that showed what chemical exposure does to animals,” she said. “And it was really terrifying. So we as medics, as a medical company, I think we just assumed that if they hit us with chemical weapons we were just going to die.”
Treating someone wounded through chemical exposure is so complicated and takes so long that the person probably wouldn’t live long enough to get through the decontamination process, she said.
“There were a lot of reports that Saddam Hussein had already used chemical weapons in his other wars, and also against his own people,” she said. Her team had heard about burning trenches filled with oil and chemicals, and Scuds also armed with chemicals.
“I took the PB pills,” Menard said. “I didn’t really want to take them, but we were pretty much forced to take them. They stand in front of you until you swallow the thing.”
Her understanding at the time was that the PB would bind to some of her nerve endings, and then nerve agent exposure wouldn’t affect her as much or as fast, she said.
“It just seemed like the delay of the inevitable to us,” she said. “But we took them anyway. A lot of us had pretty significant side effects. I think one of our commanders in our brigade ended up at the hospital with some stomach problem.”
After a couple of days, her muscles twitched, her stomach hurt, and she started to drool.
“Those are the symptoms of a nerve agent exposure,” she said.
She stopped taking them, as did many of her fellow soldiers who suffered similar symptoms.
But her dose may have been exacerbated by the pesticides she used in the war zone, as well as a plume of sarin gas that she and thousands of other troops were exposed to. On March 4, 1991, just after the ground war ended, the 18th Airborne Corps blew up 37 ammunition bunkers, one of which, according to Iraqi officials, contained rockets filled with chemical agents, the Defense Department reported. A few days later, soldiers destroyed more rockets, which United Nations officials later determined were filled with sarin and cyclosarin.
And combat stress may have factored into Menard’s exposure in that research has shown adrenaline may have increased her response to PB: She responded to the aftermath of Objective Norfolk, where U.S. tanks were blown up by friendly fire.
One of the casualties had been in to see the medics on sick call the previous day. “They don’t prepare you for what does a recovery look like when armor’s involved,” Menard said. “We needed a spatula to get our service member off the sides of the fucking walls of the armored vehicle. Most of us were kids. I was 20.”
She still has muscle twitches. In her thighs, in her biceps, in her forearms. “My muscles just kind of tick,” she said. “They just twitch on their own for no apparent reason.”
She gets a red, fluid-filled rash from her knees down and on her feet that comes and goes. She still has stomach problems, and she’s had muscle and joint pain since she got out of the Army, she said. She went to see a doctor about it while she was still in the desert, but, as is common for Gulf War veterans, it’s not in her medical records, she said.
“It limits me and what I can do on a daily basis,” she said. “The pain sometimes is pretty unbearable. Most of the time, it’s manageable. It’s just there.”
As she dealt with life—and the aftermath of combat stress—she heard background noise about sick veterans, but never quite associated Gulf War illness with her symptoms. When she turned 43, she decided to go to law school. There, she worked with veterans fighting for disability benefits for issues that looked eerily similar to her own.
“My whole life, it’s just been my normal,” she said. But last year, she went in for an exam as part of a VA disability claim and got a diagnosis.
“I didn’t even know what fibromyalgia was,” she said.
She had all of the symptoms, but she had never been diagnosed. Now she has a service-connected disability, she said.
“I’ve been treating for muscle and joint pain, and headaches, and stomach problems my whole life,” she said. “But they never called it fibromyalgia. So now, it’s validating. There’s so many of us Gulf War veterans that have this same group of illnesses, symptoms.”
‘We Had Zero Response’
Anthony Hardie also got sick immediately.
But he realized something was up—that it wasn’t just him—and that his service had caused it.
As a noncommissioned officer and member of the special operations forces community attached to a U.S. Army Central Command liaison team, earning a Bronze Star in the process, he had a bit more experience going in than Menard—just enough to serve him when he was medically discharged in 1993.
When Hardie’s unit began taking the PB pills in Kuwait City before the war began, he said about two-thirds of a group of 35 people had health issues, from mild symptoms to more extreme symptoms. And about a third didn’t get sick at all. (Researchers have also looked at whether genetics have played a part in how people reacted to the chemicals.)
When they took the pills, Hardie said he was told he would have symptoms of mild nerve agent poisoning: watery eyes, runny nose, tightness of the chest, diarrhea, twitching. Hardie experienced everything but the twitching. He and his friends also developed lung issues, and Hardie ended up with an asthma inhaler. When he deployed, he had been a competitive runner, but when he came back, he clocked 12-minute miles, followed by vomiting, he said. He was ultimately diagnosed with chronic obstructive pulmonary disease and now takes steroids.
Hardie is sure he was exposed to sarin gas, as his unit was in the right area and he heard the chemical alarms going off.
Like many other Gulf War veterans, he feels fatigued after exertion: Soon after he got out of the military, he decided to go for a long run. He made it only two miles, was too exhausted to shower when he got home, fell into bed, and didn’t wake up until the next day, he said.
“Most of all, I care about my health and my quality of life,” Hardie said. “Nobody wants to be 20-something years old on the disability rolls for the rest of your life.”
When Hardie could no longer perform his job in the Army, and after deploying to Somalia, he was medically discharged. Almost immediately, he started speaking out. Beginning in 1995, he worked with the National Gulf War Resource Center, including serving on its board. From 1999 to 2003, he served as a House of Representatives staff member. He has testified before Congress repeatedly, along with Paul Sullivan, Ron Brown, Mike Jarrett, Denise Nichols, and many other veterans who were part of the early fight for help. He now heads Veterans for Common Sense.
Since the beginning, the advocates complained that VA research has focused on whether or not veterans were sick and whether or not the symptoms were psychological in nature, continuing long after research showed physical changes after exposure to chemicals.
“We don’t need any more research on whether or not people are sick,” Hardie said. “We don’t need any of that kind of research. We never needed that kind of research.”
Researchers should have interviewed the sick veterans, Hardie said.
“They didn’t do that,” he said. “They said, ‘Let’s take the biggest cohort imaginable: Let’s take all the Gulf War veterans and let’s see how many of them have this condition.’ Well, what does that tell you? Why don’t you go and talk to all the people that have the condition and find out what they have in common?”
Through the years, the struggle has been intense:
In 1997, Congress mandated the Research Advisory Committee on Gulf War Veterans’ Illnesses after a congressional report found that the government’s efforts to find causes and treatments for Gulf War illness by government agencies were “irreparably flawed.”
In 2011, advocates fought against a move by Congress to shift funding for Gulf War illness back to VA.
In 2013, a VA whistleblower told Congress that VA buries or obscures exposure data for veterans going back to Desert Storm to avoid the high costs of disability benefits.
In 2013, the Research Advisory Committee’s budget was cut, its board members ousted, and its independence limited by VA.
In 2014, Congress passed a bill to restore autonomy to the Research Advisory Committee after VA replaced all of but one of its members.
In 2014, Congress asked VA to consider animal studies in its toxic exposure research—again—after VA ignored previous requests.
In 2016, VA again drew anger when an Institute of Medicine study found that research should not focus on environmental factors.
The advocates and veterans even fight over the name of the ailment: Though the Institute of Medicine recommended VA call the disease “Gulf War illness” because it is specific to the 1991 experience, VA still uses the term “chronic multi-symptom illness.”
“We prefer not to use the term ‘Gulf War Syndrome’ when referring to medically unexplained symptoms reported by Gulf War Veterans,” an article onVA’s website states. “Why? Because symptoms vary widely.”
Still, the research has been funded “fairly consistently” by the Congressionally Directed Medical Research Programs, Sullivan said. That money comes through the Defense Department from Congress.
“It’s a grassroots thing that veterans and others go and talk to their congressmen,” Sullivan said. “And it’s actually the congressmen who fund that program every year. But there’s no guarantee. So every year, the question is, ‘Will there be a Gulf War illness research funded program or not?’ and we’ve been really happy to see that it’s been funded fairly consistently for the last 10 to 12 years.”
Before that, she said, VA funded the research and it went to VA researchers. Because of the outside funding, Sullivan was able to bring in outside researchers from the university system who are experts in all of the different areas that encompass Gulf War illness, she said.
VA officials say they’ve been working to improve the relationship between the sick veterans and VA.
“I came here five years ago, and really got involved with the [Research Advisory Committee] about three years ago, as an adviser,” VA’s Rumm said. “The new group has really reached out to not only other parts of VA, but is really focused on veterans.”
There have been three listening sessions with veterans in the past year, he said, which his office has been a part of, as well as the committee traveling to Cleveland and Texas for hearings.
“I can’t speak to where it was before,” he said. “But I can tell you that we have a very collegial relationship with our office to their office.”
Hardie said he’s wary of trusting them.
“I’ve learned with the VA that they talk a good game but ultimately tend to over-promise and under-deliver on all things Gulf War,” he said in an email. “It’s great that they’re trying, but they’ve done so many awful things, including gutting and whitewashing [RAC’s] 2012 strategic plan and gutting the RAC immediately thereafter, that there’s no way anyone could have confidence in what they’re doing, unless it actually turns out favorable—which I’ll believe when I see it, and have strong doubts.”
Still, he had good experiences with VA Secretary David Shulkin, under President Donald Trump, until he was fired; as well as with Secretary Bob McDonald, under President Barack Obama.
Under Wilkie, Hardie said the advocates reached out and tried to escalate the issue, before finally formally requesting a meeting, through a joint letter from Disabled Veterans of America and Veterans for Common Sense.
“They never got back to us on the issues,” he said. “We had zero response.”
Last year, just before the Covid shutdown, the advocates reached out to both chambers of Congress to talk about the disability claims denial issue, and they had agreed to a roundtable with the veterans service organizations to talk about it.
And then that all died away, another victim of Covid-19.
Hardie and the advocates have put in a request with the new VA secretary, Denis McDonough, to try to address the 80% denial rate of disability claims for Gulf War veterans, he said.
‘That’s What Did It. That’s What Made Them Sick’
After Menard and Hardie returned home, and as Sullivan continued her work in Boston, researcher Jim Moss also made a connection.
Working at a U.S. Department of Agriculture lab as a toxicologist, he tried to figure out the mode of action of DEET—which the department had created during World War II—and insect repellent. He hypothesized that the thing that caused the toxicity and repellent action were the same mechanism.
He used two compounds on cockroaches, assuming that adding a second compound to DEET would make the DEET more or less toxic. The second compound, DFP, is an AChE inhibitor, and “almost identical to sarin gas,” he said. “It’s very toxic, but it’s not so toxic that you think you have nerve gas in the room.”
It made the DEET more toxic, he said.
He called researchers he knew at Aberdeen Proving Grounds who were working on nerve agent toxicity in November 1993, he said.
At about the same time, he began to hear the press accounts about Gulf War veterans getting sick. He also read that researchers wondered whether nerve gas was the cause.
“I thought that nerve gas is an obvious suspect,” Moss said. But after calling Aberdeen and talking to a scientist there named Alan Brimfield about pyridostigmine bromide’s use as nerve gas protection, he wondered if there was more to the story. Moss hadn’t known about the PB. So he ordered a bottle of it.
“I started doing experiments on pyridostigmine bromide,” he said. “The nerve gas hypothesis depends on exposure, and I don’t think they really got exposed to nerve gas. I think they liked the idea—because then it’s somebody else’s fault.”
The PB was meant to bind to 30% of the cholinesterase, and then a nerve agent would only be able to bind to the other 70% of the cholinesterase.
“And then, supposedly, the pyridostigmine bromide would come off,” Moss said. “And then, of course, the nerve gas is gone by then. So you can survive with only 30% of your enzyme activity. But if you think about it, if you have three times the dose, you’re dead.”
Moss found in his experiments that DEET increased the toxicity of the PB by fourfold, in some cases.
“People got sick when they took pyridostigmine bromide,” he said. “They didn’t get sick from nerve gas—it was always after they took the pills.
“Biologically, if you could get rid of all the politics, and just take this toxicology angle, that’s the suspect,” he said. “That’s what did it. That’s what made them sick.”
Moss also believes the veterans’ immune systems were directly affected by PB and that combat stress may have factored in.
In 1997, he published a paper saying adrenaline may also increase the toxicity of PB.
But over the years, other scientists had similar findings.
“There was a lot of pushback early on,” Sullivan said. “The thinking at the time in the early ’90s was if you didn’t have an acute poisoning that required hospitalization at that time, you could not have any chronic health effects from that exposure time. It turns out, that is not true. And it took the work of our group and other groups studying agricultural workers with similar pesticide exposures or people who were professional pesticide applicators.”
The more they looked, the more they found. White looked at low-level sarin exposure from the Khamisiyah weapons depot detonations.
“What they found was that, for every small increase in the amount of sarin that our veterans might have been exposed to, they had more changes on the white matter in their brain imaging,” Sullivan said.
There had been prior research: In 2001—20 years ago—a study appeared in Toxicology and Industrial Health journal showing that low-level exposures to sarin gas caused changes in the brain associated with memory loss and cognitive dysfunction, as well as depressing the immune system.
A 2002 study found that low-level exposure of sarin in rats combined with heat stress—as troops might be expected to face in a region where temperatures soar above 100 degrees—caused neurological changes that could be associated with memory loss and cognitive dysfunction.
And a 1995 study found brain lesions, which exacerbated over time, in rats that had survived a single dose of sarin exposure—after previous studies had found changes in the brains of monkeys and industrial workers who had been accidentally exposed to sarin.
The Boston researchers also found that pyridostigmine bromide pills affected cognitive functioning, Sullivan said. Then, Sullivan’s group received funding to look at pesticides as a potential risk factor for Gulf War illness.
“We went right to the source of people who would know the most about what pesticides were used, how they were used, how they were bought, how they were stored,” Sullivan said. “We actually went to see all of the veterans who were pesticide applicators during the Gulf War.”
They traveled to 72 cities over three years, also talking with preventive medicine personnel. They were exposed at higher levels than other groups of veterans, she said.
“What we learned was that, in fact, the pesticides absolutely caused changes to our Gulf War veterans’ cognition—so it affected their memory and attention,” Sullivan said. “It also caused mood changes in some of our veterans, as well.”
‘Just Incredible Interest’
VA officials say they’ve also learned “a great deal” from recent research into Gulf War illness.
They’ve followed 30,000 veterans since they returned home, and found that Gulf War veterans consistently report poor health, said Erin Dursa, senior epidemiologist in the Department of Veterans Affairs Post Deployment Health Services Epidemiology Program.
They have higher levels of hypertension, coronary artery disease, irritable bowel syndrome, dermatitis, and seizures, and about 30% have Gulf War illness.
VA’s “most substantial” research is looking at a single case definition for Gulf War illness. That, Rumm said, could drive future treatments.
“It has been a very challenging endeavor to come up with one definition, and a lot of it has to do with the fact that when you think of a case definition, a lot of the elements that we as epidemiologists or clinicians put in a case definition, we don’t have that information for Gulf War illness,” Dursa said. “So dose duration, frequency of exposure—sort of all those things that go into a case definition are missing from how Gulf War illness is defined.”
As Gulf War veterans get older, they’re starting to show up at VA for age-related conditions, which means VA could learn more about them, Rumm said. And, as the pandemic raged, people turned to telemedicine and were then directed toward the Gulf War health exam, which also brought in Gulf War veterans new to VA health care.
The confluence of events may have finally created the perfect storm Gulf War veterans need.
“In the past five years, there’s been just incredible interest,” Dursa said. “There’s been more funding, there’s been more studies, and I think that part of it has to do with just the technology and the methods.”
She’s seeing as many as 14 high-tech brain imaging studies, genomic wide association studies to identify biomarkers, and VA’s project uses machine learning to gather data—all techniques that weren’t available a decade ago, she said.
“I think we’re really listening to the experts and really trying to utilize every piece of data that we have,” Dursa said. “At the end of this, what my hope is, is that we can do better case finding—we can identify who it is that’s at risk—we can case count, we know exactly who they are, and we can help them get them treatment.”
Sullivan has also been using the new technology to see if what the early animal studies showed is replicated in veterans’ brains.
“We now have brain imaging tools that we didn’t have early on,” she said.
The messages an inflamed, damaged brain sends to the other parts of the body cause the symptoms of Gulf War illness: the cognitive, respiratory, gastrointestinal, and pain problems, Sullivan said. Knowing the mechanism can help with a cure.
“That is incredibly important because it tells us how we can then target treatments,” Sullivan said. Treatments could include medications that are already FDA-approved to reduce inflammation in the brain. They’re also now looking at which cells may be causing the inflammation.
“There are microglial cells and astrocytes, and there are FDA-approved drugs that target either of those or both,” Sullivan said. “So it’s important for us to understand exactly which ones are causing that.”
She also thinks overactive glia may be causing issues throughout veterans’ bodies—their nervous systems, immune systems, and gastrointestinal system.
(Another study found that sick Gulf War veterans have fewer healthy gut bacteria than did controls. Moss theorizes that the chemical exposures caused the autoimmune response to change so that sick veterans’ immune systems attack the healthy bacteria, he told The War Horse.)
Through her work as the former associate scientific director of the Research Advisory Committee on Gulf War Veterans’ Illnesses, Sullivan realized her team needed help. Because Gulf War illness affects multiple body systems, they needed experts in all of those areas. So she built a Gulf War Illness Consortium at Boston University School of Public Health that included those experts.
“Our idea was to develop diagnostic markers for Gulf War illness—some kind of an objective marker, a blood test or brain imaging marker or something like that,” Sullivan said. “Because our veterans have struggled with getting validation for their illness—and services and benefits from VA—because, right now, it’s a self-diagnosed disorder in terms of it’s done by a reporting of symptoms.”
In other words, doctors can’t see it during an office visit. It doesn’t show up on most scans. So her team hoped to identify an objective marker, and then learn from it to create treatments. They may be able to do that through a blood test.
Other recent research has found:
Gulf War veterans are aging about 10 years faster than nonveterans and have higher rates of high blood pressure, high cholesterol, heart attacks, diabetes, stroke, arthritis, and chronic bronchitis. Rates corresponded with exposure to PB, sarin, and pesticides, Sullivan said.
Rates of Gulf War illness are higher in female veterans than men.
Another study found men had more biomarkers than women, and women had different symptoms from men: Men have higher rates of chronic health outcomes, but women have higher rates of diabetes, Sullivan said. They also had higher rates of fibromyalgia and irritable bowel syndrome.All of the research now being conducted for Gulf War veterans is laid out at the Defense Department’s Gulf War Illness Research Program’s website.
Sullivan expects more findings soon from researchers across the country: She and her team also created BBRAIN (Boston Biorepository, Recruitment and Integrated Network for GWI), which is a repository designed to get samples and data to other researchers who may be able to come up with markers and treatments, with the goal of making the process faster so veterans don’t have to wait another 30 years for results.
“It’s so encouraging to me that, having been in this field from the very beginning—when we literally had no idea what was causing this disorder, whether it was going to be a chronic disorder—and systematically figured out, ‘OK, this is a chronic disorder; it’s not related to stress, it’s related to chemical exposures. Now what’s causing it, the path of biology of that?’ And then to get to the point where we can say, ‘OK, let’s develop some treatments.’ It’s really encouraging for us to be able to try and help our veterans who’ve been waiting so long for answers and for help.”
‘Ways to Do More’
Everyone—advocates, researchers, and officials alike—say there’s reason to expect real progress, and real solutions, soon.
Politicians continue to push for toxic exposure legislation, particularly following comedian Jon Stewart’s comparison of burn pit exposure in Iraq and Afghanistan to that of the burning towers on 9/11.
“As Chairman of the House Committee on Veterans’ Affairs, I hear from too many veterans struggling with the effects of toxic exposure following their service,” Rep. Mark Takano, D-California, wrote in a note to The War Horse. “Last Congress, I led the effort to finally pass the Blue Water Navy Vietnam Veterans Act, but it took more than 40 years to grant these veterans relief. The burden of proof shouldn’t be on our veterans, and there’s no reason that they and their survivors should have to fight VA for the care and benefits they earned. We need to recognize toxic exposure as a cost of war—that’s why I made it a top priority for our Committee again this Congress.”
On the Senate side, Sens. Thom Tillis, R-North Carolina, and Maggie Hassan, D-New Hampshire, reintroduced in March the Toxic Exposure in the American Military Act to improve how veterans exposed to toxins receive VA health care and benefits.
And a quick search of research on Gulf War illness over the past year indicates there’s been a flurry. The experts say there’s a reason for that.
In August, VA, the Defense Department, and the Gulf War Illness Research Program hosted a “State of the Science” conference. That inspired researchers to present and papers to be written, Hardie said. And, he said, research money from Congress has also increased significantly from $5 million a year in 2006 to about $22 million in funding for the past several years.
But there is still work to be done.
Sullivan said it still shocks her to hear that veterans don’t know about Gulf War illness.
“There should be very clear information there,” she said. “Where do you go and how do you get treatment? How do you get onto the Gulf War Registry? I mean, some veterans don’t even know about that.”
Any veteran who might have been exposed should know what’s available, she said.
“We’re looking at ways of doing more,” Rumm said. They put out two newsletters a year about toxic exposures, and they meet with veterans and VSOs. They’ve also been pushing the Gulf War Illness Registry exam, he said, and they’d just had a call the day they talked with The War Horse with VSOs to talk about training for toxic exposure information.
Beyond better treatments, however, Sullivan also said veterans should be getting their benefits.
VA presumes service connection for Gulf War veterans who have had chronic unexplained symptoms for at least six months, including for chronic fatigue, fibromyalgia, functional gastrointestinal disorders, and other undiagnosed illnesses. Those include abnormal weight loss, fatigue, cardiovascular disease, muscle and joint pain, headache, menstrual disorders, neurological and psychological problems, skin conditions, respiratory disorders, and sleep disturbances.
Getting those benefits is another issue altogether: Even with presumed service connection, the Government Accountability Office reported in 2017 that Gulf War illness cases are approved at a rate three times lower than other disability cases and take an average of four months longer to complete.
VA officials told the GAO that their staff needs better training to understand how to process Gulf War illness claims, and they have since been trained—though they have also not tracked whether medical examiners hired by contract have also been trained.
“In almost every deployment, there are toxic exposures and we need to have the funding to really have the research to help, but also the funding to validate our veterans and give them the benefits that they deserve,” Sullivan said. “Our veterans have been fighting for benefits since day one and 80% of claims are still denied at the VA even with all that we know now and all the research that we’ve done. So I would say right off the bat that veterans who have documented health effects from these types of deployments should get automatic service connection.”
Hardie would like to see a “toxic exposure czar”—and a team to go with it—at the White House level, or Health and Human Services, not at VA, he said. From there, he’d like to see a plan developed around best practices aimed at improving Gulf War veterans’ quality of life—as well as Vietnam veterans and veterans exposed to burn pits in Iraq and Afghanistan, and toxins on bases around the world.
Gulf War veterans are also eligible for the airborne hazards registry, which has been notoriously difficult to sign up for, with people either being kicked out of the system or finding it took too long. “We are trying to improve that process,” Rumm said. Three months ago, VA had a symposium that worked to address the problem, he said. However, if people call the number listed on the website, someone will help them through the process.
“I think they’re trying to do a better job,” Sullivan said. “And they do have the war-related illness and injury study centers that are trying, but there’s only three of them around the country. And that’s just not enough to treat the many, many veterans with environmental exposure-related illnesses. There’s just not enough.”
‘Coming to the Clinic Soon’
When Hardie first started his journey, nothing helped. He treated his symptoms in a piecemeal way—as did the other veterans.
But in recent years, though his symptoms can still be debilitating, he has found some relief—and almost entirely through supplements. He finds coenzyme Q10 “extremely helpful,” he said. Gingko biloba improves blood flow to the brain and may boost cognitive speed. And he takes curcumin, which is an antioxidant and anti-inflammatory shown to help Gulf War vets. And the low FODMAP diet, often recommended for those with irritable bowel syndrome, has also helped, he said. That diet is also being researched now for Gulf War illness. A sleep study led to a CPAP machine, which he said has been life-changing.
But those treatments appear to be just the hint of what’s coming—and the new treatments likely provide promise for civilians, too.
“We have multiple treatment trials that are ongoing right now,” Sullivan said.
Oleamide, which is available over the counter and may be helpful as a sleep aid or as a weight-loss supplement, is being studied to see if it can help reduce inflammation in the brains of Gulf War vets.
“That looks like it may be promising,” she said. “And that will be coming to the clinic soon.”
The researchers are also working with Nancy Klimas, director of the Institute for Neuro-Immune Medicine at Nova Southeastern University, as well as the director of clinical immunology research at the Miami VA Medical Center, on research that looks at possible differences between men and women in treatments for chronic fatigue syndrome.
In 2011, Beatrice Golomb, with the University of California-San Diego’s medical school, found that Gulf War veterans who took the supplement coenzyme Q10 saw improvement in their symptoms, including headaches, inability to focus, and feeling tired after exercising or other exertion. That was the first research to offer potential help to the sick veterans. Golomb’s finishing up a phase 3 on CoQ10 now through the Gulf War Illness Consortium.
“Phase three is the last trial before you bring it to the formulary at the VA,” Sullivan said. “If this is successful, this may be the first medication that could be approved through the formulary at the VA for Gulf War Illness for Gulf War veterans.
“So we’re very excited about that possibility.”
They’re running treatment trials of acetylcysteine, which is typically used as a cough medication, to reduce swelling in the brain and oxidative stress. It may also be effective as a treatment for people with chronic Covid symptoms.
“We’re really excited about getting that one off the ground soon,” Sullivan said.
Other treatment trials will check the efficacy of bacopa, which is used in traditional medicine to treat cognitive issues; etanercept, which is used to treat types of arthritis and psoriasis; and mifepristone, which is used to terminate pregnancies but also appears to lessen neuroinflammation.
All of them are on the market now, which means they have the potential to get to veterans quickly, Sullivan said.
And, in late March, researchers found differences in the eyes of veterans with severe Gulf War illness that could potentially be used as biomarkers.
The work to help Gulf War veterans could also help civilians. There’s a correlation to people exposed to pesticides, such as farmers or pesticide applicators, Sullivan said. There have also been several exposures to sarin gas, from the subway attack in Tokyo to the Syrian government’s attacks on its own people.
People suffering from both fibromyalgia and irritable bowel syndrome—as well as multiple sclerosis—may also benefit from the research. The researchers believe the gut issues are connected to the brain inflammation, Sullivan said.
For the research to continue, Sullivan needs veteran volunteers to participate in the studies, she said. They’re recruiting in the Bronx, Boston, San Francisco, and Miami, and can offer some travel help for veterans in rural areas. Veterans can learn more at the BBRAIN website or send an email to firstname.lastname@example.org.
At VA, because research has shown problems with oxidative stress and inflammation, they’ve focused treatments on “things like complementary medicine, things like acupuncture, yoga, and others,” Rumm said. In addition, VA’s War-Related Illness and Injury Study Center evaluates and researches veterans, as well as providing education through webinars and elearning to train VA providers on how to treat and recognize Gulf War illness.
“In probably the best clinical trials we’ve done in the Gulf War field, we actually showed a modest to moderate effect—but consistent across several trials—with exercise helping Gulf War veterans,” Rumm said. They’re also looking at noise suppression devices, which seem to help with neuroinflammatory responses.
Researchers say they’re close to understanding how the disease works, as well as figuring out how to fix it.
“We want to say our veterans still have the illness, but it’s also really important to say all the progress we’ve made over the years and, and how excited we are at the prospect of having an objective marker—a blood test or a brain imaging test that says, ‘Hey, you have this and now you can get benefits and now we know how to target treatments for you,’” Sullivan said. “This is the most exciting thing to be at this almost cliff point where we’re just about there.”
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This War Horse investigation was reported by Kelly Kennedy, fact-checked by Ben Kalin, and copy-edited by Mitchell Hansen-Dewar. Prepublication review was completed by BakerHostetler.