On October 24, 2014, Glenn Stewart, an Army Desert Storm veteran, went to the emergency room at his local VA hospital to treat his third episode of temporary blindness.
“It was like a smear,” he said. “It was like a smear on a microscope slide, and eventually occupied a fourth of my field of vision. After fifteen minutes, it went away.”
Stewart had had another episode of temporary blindness just ten days earlier. He went into a Gulf War Illness chat group, looking for someone who might have experienced the same thing before, worried he might be facing a stroke.
The VA medical center did blood tests and an FMRI, all of which came back inconclusive.
“The doctor told me there was no such thing as Gulf War Illness,” Glenn said. He instead offered Glenn a psychological evaluation.
“Making a statement like that is ignorance,” Glenn said. “There is a lot of research and lots of studies done on it.
“I wanted to slap him.”
Stewart is right; there is a lot of research supporting the existence of what he and many other Gulf war vets experience on a daily basis, 25 years after their war ended. They suffer without any acknowledgement from the government agency meant to take care of them.
The illness is described as a multi-symptom, chronic condition experienced by 250,000 of the 700,000 U.S. troops deployed to the Persian Gulf region during Operations Desert Shield and Desert Storm. They experience symptoms ranging from chronic fatigue to various cancers. Fibromyalgia and bowel disorders are two big indicators of the disorder. Stewart suffers from both, but the Department of Veterans Affairs doesn’t recognize the illness by that name.
The VA calls their condition “chronic multisymptom illness” or “undiagnosed illness.” According to the VA’s Public Health page, the VA prefers “not to use the term ‘Gulf War Syndrome’ when referring to medically unexplained symptoms reported by Gulf War veterans because symptoms vary widely.”
The VA presumes that specific disabilities diagnosed in certain veterans were caused by their military service. If a veteran is diagnosed with a presumptive condition, the VA is forced assume the condition service-connected, then veteran is then entitled to medical or disability benefits associated with that diagnosis. Because the VA doesn’t use an umbrella term for Gulf War Illness, many veterans find themselves without compensation or connection for related illnesses that don’t have presumptive status.
Former VA epidemiologist Steven Coughlin resigned from the VA in 2012, citing serious ethical issues around the dissemination of false information about veteran health and withholding research about the link between nerve gas and Gulf War Illness.
“What I saw [at VA] was both embarrassing and astonishing. I couldn’t stay any longer,” Coughlin told the Daily Beast.
By 2014, the situation still hadn’t changed. Gulf War veterans already have presumptive status for a number of conditions, but the VA denied 80 percent of Gulf War Illness compensation claims, citing “inadequate and insufficient evidence” to indicate that the cancers and migraines they suffer from are service-related.
“There is no consistent evidence of a higher overall incidence of cancer in veterans who were deployed to the Gulf War than in non-deployed veterans,” Robert Jesse, then the VA’s acting undersecretary for health, wrote in a letter Colorado Congressman Mike Coffman, who requested information on adding the increased incidence of brain cancer, lung cancer, and migraines in Gulf War veterans to the VA’s list of presumptive conditions.
Ron Brown, president of the National Gulf War Resource Center, told USA Today that the VA’s research contradicts the Institute of Medicine’s findings.
“What they’ve done is used the overall population of deployed veterans during Desert Storm,” he said. “If you use the whole population, it does not show an increase of cancers, but if you look at Khamisiyah, there are significant increases of cancers.”
Khamisiyah is the site of a munitions industrial center in Iraq, where demolition of conventional and chemical munitions just after the end of the 1991 Gulf War exposed as many as 100,000 service members to Sarin nerve gas. For those near Khamisiyah, the rate of brain cancer was was more than twice as high as unexposed veterans.
Burning oil wells are believed to be the cause of increased lung cancer deaths, a rate 15% higher than those who did not serve in the 1991 Gulf War, is considered by the VA to be “inconclusive” because the VA did not know how many of the those afflicted were smokers.
The VA’s research not only contradicts the Institute of Medicine’s findings, it contradicts the VA’s own research on brain cancer. That study was backed by a similar one in the American Journal of Public Health. Furthermore, migraines and chronic fatigue were found in Gulf War veterans in a National Institute of Health study just one year before the 2014 ruling.
That same year, Georgetown University found the first physical traces of Gulf War Illness, evidence showing atrophy in the brainstem, which regulates heart rate. Another group showed atrophy in cortical regions adjacent to pain perception. This shows Gulf War veterans’ have abnormalities in the bundle of nerve fibers connecting the brain areas involved in the processing and perception of pain and fatigue.
“Our findings help explain and validate what these veterans have long said about their illness,” Rakib Rayhan, a Georgetown University researcher, said. The study’ lead researcher, Dr. James Baraniuk, added “Now investigators can move from subjective criteria to objective MRI and other criteria for diagnosis and to understand the brain pathology.”
While Georgetown’s findings are the latest evidence, studies as far back as 2003 found Khamisiyah veterans are at increased risk for hospitalization from circulatory diseases, specifically cardiac dysrhythmias.
In the face of what should be considered overwhelming evidence from multiple, separate studies and institutions, the VA still doesn’t recognize Gulf War Illness, so veterans with symptoms that don’t fall in the presumptive category are still denied treatment and compensation for their issues. That includes Glenn Stewart, who says his illness “robbed him of his life.” Stewart now runs a YouTube channel about his struggles with his condition and his fighting with the VA.
“You got a a whole bunch of veterans sick, in pain, and dying due to Gulf War Illness,” he said. “They feel that no one is going to help them and are losing hope. Some of these people will take their own lives. It is not that I will commit suicide or want to die, but I look forward to dying because it will end my daily pain and torture.”
Read our update on the progress researchers are making on Gulf War illness here.