Retired Marine Capt. David Winnett is grateful for his Tricare health program, which keeps him from having to go to the Veterans Affairs Department to treat his Gulf War-related illnesses.
At the VA, says the moderator of the 10,003-member Facebook group Gulf War Illnesses, veterans often are sent to mental health providers when they show up with symptoms considered classic of Gulf War illness, such as gastrointestinal dysfunction, skin rashes, muscle and joint pain, profound fatigue and cognitive issues.
Winnett said more than 300 veterans responded to an informal survey he posted to the group asking whether they had been referred by VA to mental health professionals instead of having their physical health problems addressed and treated.
"All over the country, it's the same thing being reported. These people walk into a VA hospital or clinic and either the physicians don't know about Gulf War illness or they pretend they don't know and the veteran ends up in the psych ward," said Winnett, who has fibromyalgia and chronic fatigue syndrome that began after his 1991 deployment.
Advocates for Gulf War veterans were in Washington on Tuesday for the 25th anniversary of the Operation Desert Storm ground assault, pushing for continued research and improved treatment for veterans with Gulf War-related illnesses.
Speaking before the House Veterans' Affairs oversight subcommittee, veterans and scientists who have studied Gulf War diseases say the VA is not doing enough to ensure its physicians are following recommended treatment guidelines for these veterans with chronic health conditions.
And, the advocates add, even those guidelines, issued in 2014, are flawed, relying heavily on behavioral therapy to ease symptoms, as well as psychiatric medications.
"The health problems of Gulf War veterans are not vague and extremely variable, as is often suggested," Roberta White, chair of the department of environmental health at Boston University School of Public Health, told subcommittee members. "I cannot think of any illness in which all patients share exactly the same symptoms. ... Gulf War illness is not different from any other disorder in this way."
Earlier this month, a scientific panel hired by VA to review research on Gulf War illnesses and make recommendations released a report saying the department should stop searching for causes of these illnesses and instead focus on monitoring and treating those who are sick.
The report, the 10th by the Institute of Medicine on Gulf War illnesses, found that Gulf War veterans are at increased risk for developing post-traumatic stress, anxiety, Gulf War illness and chronic fatigue syndrome, but do not appear to have higher incidence of cancer, respiratory illnesses or other neurodegenerative conditions.
The IOM panel, led by Deborah Cory-Slechta, an environmental medicine professor at the University of Rochester School of Medicine and Dentistry, said that without actual records of individual exposures, and the prospect of obtaining the data unlikely, VA should spend its resources on researching treatments and taking care of patients.
"The committee wants to emphasize that it did not recommend that research on the health of Gulf War veterans be stopped," Cory-Slechta said. "Rather, the committee found that research that continues to seek a causal link between Gulf War illness and other health conditions found in Gulf War veterans and specific chemical exposures, such as [anti-nerve agent pills], sarin or pesticides, is not likely to yield useful information."
According to the report, the only condition that can be proved to be caused by Gulf War deployment is post-traumatic stress disorder.
The investigation also found "sufficient evidence of an association" for generalized anxiety disorder, depression, substance abuse, gastrointestinal symptoms, chronic fatigue syndrome and Gulf War illness, the catch-all term used to describe unexplained symptoms from Gulf War exposures.
The panel also found a "limited but suggestive" link between Gulf War deployment and amyotrophic lateral sclerosis, or ALS; fibromyalgia; chronic pain; and self-reported sexual dysfunction.
But it found little or no evidence that cancer, skin conditions, birth defects, musculoskeletal system diseases, multiple sclerosis and other illnesses were related.
Of the 700,000 troops who served in the Persian Gulf War, more than 33 percent are receiving medical treatment from the VA. That figure is up from 13 percent in 2000. According to Dr. Carolyn Clancy, assistant deputy undersecretary for health, safety and quality at the Veterans Health Administration, 145,000 Gulf War veterans have undergone a physical for enrollment in the VA's Gulf War registry.
Clancy said VA is "taking every possible step to help these veterans" and continues to invest in research on their diseases.
"I assure you VA is ... advancing clinical research and clinical care for Gulf War veterans. Since our last meeting, VA has conducted 60 studies on Gulf War illnesses. Research investment has risen form $5.6 million in 2012 to $14 million this year, and that's a conservative estimate," Clancy said.
She said many of VA's studies are focused on novel treatments for veterans and that the department does not suggest that these illnesses are psychiatric in nature.
"We have centers of excellence, War-Related Illness and Injury centers, which are charged with conducting cutting-edge research, clinical research and advanced care for Gulf War veterans," Clancy said. "We have learned how important it is to integrate care around our veterans and their needs."
But veterans and lawmakers say VA's efforts to date have not been enough.
After listening to testimony, subcommittee chairman Rep. Mike Coffman, R-Colo., a retired Marine major who served in both the Persian Gulf War and Iraq War, promised more action.
"The lack of progress that has been made by the VA in the three years that has passed since these problems were first visited by this committee is frustrating and disconcerting. I think veterans should be treated better, and I will be exploring options for how to address these issues in the coming weeks," Coffman said.
New Hampshire Rep. Ann McLane Kuster, the oversight subcommittee's ranking Democrat, said it is imperative to address Gulf War veterans' needs with an eye toward taking care of post-9/11 veterans in the future.
"If we don't understand the causation behind Gulf War syndrome and exposure to toxins and other trauma, like post-traumatic stress disorder, traumatic brain injury, how it all comes together, we are not going to have an understanding of helping those who we have put in harm's way in Afghanistan and Iraq. We need to continue investigating causation while we move forward," Kuster said.
Coffman said he is considering a legislative proposal by Rep. Tim Walz, D-Minn., that would create a VA "center of excellence for toxic wounds," a one-stop shop for research, clinical policies, administration and leadership for environmental exposure medicine.
"Instead of having this research fragmented by each problem — whether it be Agent Orange, Gulf War syndrome, burn pits — let's bring it together to really try to combine resources and get down to the bottom of this, for the vets affected now and in the future," Coffman said.
Patricia Kime covers military and veterans' health care and medicine for Military Times. She can be reached at firstname.lastname@example.org.