Got Gulf War Illness? These Researchers Want to Hear from You and Other Vets

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Oil well fires rage outside Kuwait City in the aftermath of Operation Desert Storm.
Oil well fires rage outside Kuwait City in the aftermath of Operation Desert Storm. The wells were set on fire by Iraqi forces before they were ousted from the region by coalition force. (Department of Defense photo)

The Department of Veterans Affairs and National Institutes of Health have teamed up to learn more about Gulf War Illness, a chronic condition that affects nearly a third of veterans who deployed to Operation Desert Shield and Desert Storm more than 30 years ago.

The VA and NIH announced Monday that they are seeking 75 participants for the study: 50 who served during the Persian Gulf War and have symptoms of Gulf War Illness, such as chronic fatigue, gastrointestinal problems, muscle and joint pain, memory impairment or loss, and 25 who also deployed to the conflict but are asymptomatic.

Researchers hope the study will lead to better understanding of the complex condition, with an aim to develop diagnostic criteria, testing and potential treatments.

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"Effective treatments for Gulf War Illness have remained elusive, forcing health care providers to mostly focus on easing patient symptoms," VA Chief Research and Development Officer Rachel Ramoni said in a press release issued Monday. "VA and NIH's collaboration will bring together experts who will meticulously investigate the underlying causes of Gulf War Illness symptoms."

Up to 210,000 of the 700,000 veterans who deployed to the 1990-91 Persian Gulf War later developed symptoms such as persistent fatigue, chronic headaches and pain, memory loss, skin conditions and mood disturbances.

Veterans of the 1990-91 war to liberate Kuwait following an invasion by Iraq have long clamored for research into their illnesses and felt ignored by a VA that first labeled their symptoms as psychosomatic.

For years, VA denied disability claims for thousands of veterans who applied, rejecting their claims that their illness was service-connected. It invested heavily into research examining stress as a possible cause while denying benefits to those with a complex array of symptoms.

In 2014, VA's then-Under Secretary for Benefits Allison Hickey promoted using the name "chronic multi-symptom illness," instead of Gulf War Illness or Gulf War Syndrome, as it first was described, to avoid implying a causal link between the symptoms and military service -- a connection that would give veterans easier access to disability compensation.

As of 2017, according to the Government Accountability Office, VA denied more than 80% of disability claims filed for Gulf War Illness.

Researchers have long suspected environmental factors, such as exposure to sarin gas, pesticides, anti-nerve agent pills or oil well fires, played a role in the development of these symptoms.

Last year, a researcher with the University of Texas Southwestern Medical Center published a study demonstrating a link to sarin, released during a bombing campaign of Iraq chemical weapons storage and production facilities. The researcher argued the study proved a genetic link between sarin exposure and the development of Gulf War Illness.

The new study from the VA and NIH will not delve into the cause of the illness. Instead, it will focus on the immune and nervous systems and affected veterans' bodies' ability to produce energy.

"This comprehensive study will take a new look at this illness and uncover biological mechanisms that may pave the way to treatments," said Dr. Walter Koroshetz, director of the National Institute of Neurological Disorders and Stroke, part of the NIH.

Under the PACT Act, passed in August 2022, veterans who were on active duty prior to Dec. 31, 2021, have been ill for six months or more and were awarded a 10% or higher disability rating for illnesses often ascribed to Gulf War Illness -- functional gastrointestinal disorders, chronic fatigue syndrome, fibromyalgia and other undiagnosed illnesses are eligible for a disability review for presumptive conditions.

Anthony Hardie, a Persian Gulf War veteran who serves as national chairman and director of the board of Veterans for Common Sense, a group that supports veterans and veterans legislative reform, said he welcomed the study, but the announcement is somewhat disheartening to affected veterans, seen as another delay in a long fight for recognition.

Hardie and others have petitioned the Centers for Disease Control and Prevention for the creation of a medical diagnostic code for Gulf War Illness -- a designation seen as necessary to define the illness and accelerate health care and benefits for veterans with the condition.

"We need a diagnostic code now, yesterday. We don't need to wait for this study, which will end when, in 2030, 40 years after the war?" Hardie said. "VA needs to fix the egregious denial rate of Gulf War Illness claims rather than keep saying, 'Just wait, we are working on this.'"

He also expressed concern for the small number sought for the study and questioned whether affected veterans will want to volunteer for anything that is remotely connected to the VA.

"I think that NIH is doing a good thing," Hardie said. "Finding veterans, though, who are willing to come to Bethesda, Maryland, for two weeks will be a challenge. That is concerning, and the small study population seems pretty small to be doing a deep dive."

To be eligible for the study, named the VA-NIH Investigative Deep Phenotyping, or IN-DEPTH, study of Gulf War veterans health, also known as Project In-Depth, participants must be between the ages of 48 and 70, have served in the Gulf War and had symptoms or be healthy.

Veterans initially will be screened by phone, and NIH staff will review their medical records. If selected to participate, the participants would travel to the NIH Clinical Center in Bethesda, Maryland, where they would spend two weeks in the hospital, receiving comprehensive testing. According to the researchers, tests will involve a peak exercise challenge to trigger symptom flare-ups -- a process used to research other chronic illnesses such as chronic fatigue syndrome, also known as myalgic encephalomyelitis.

Monitoring would continue at home, using activity trackers, questionnaires and diaries.

No treatments will be administered during the time period, according to the VA and NIH.

More information, including contact emails for those interviewing veterans interested in participating in the study, can be found on the NIH's Project In-Depth website.

-- Patricia Kime can be reached at Patricia.Kime@Military.com. Follow her on Twitter @patriciakime.

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