A scientific panel convened to define Gulf War illness for researchers and doctors who treat veterans of the 1990-91 Persian Gulf War failed to find a singular definition, saying a lack of evidence hampered that effort.
The issue is not just one of semantics: Case definitions are used to identify and prescribe treatments, enroll participants in research studies and define cohorts. Without them, medical advancements and treatments can be delayed, panelists said.
“The diversity and intensity of exposures and experiences, as well as the breadth and extent of symptoms, warrant workable definitions of the illness and nomenclature so VA can advance research and administer effective treatments,” said Kenneth Shine, committee chair and University of Texas executive vice chancellor for health affairs.
In lieu of a singular definition, the panel recommended two — one commonly used by the Centers for Disease Control and Prevention and another created by Baylor University researcher Lea Steele for a 2000 study of Kansas veterans — that may suit researchers and physicians, depending on their needs.
Panel members said the CDC definition is broad and may capture more patients, while the Kansas definition, which is more restrictive, might better guide research.
The panel’s failure to find or create a single case definition isn’t likely to sit well with veterans who have pushed for one for years.
The VA Research Advisory Committee on Gulf War Veterans Illnesses last year recommended that VA determine a definition by reviewing current literature on the subject, assessing data of those with symptoms and medical conditions and incorporating the opinions of experienced Gulf War illness researchers into the final opinion.
At VA’s request, the IOM panel conducted only a literature review.
“It is hardly surprising that based on a literature review alone, the committee was not able to develop a new case definition ... this fruitless process cost VA $850,000,” said James Binns, chairman of the RAC-GWVI.
Binns also raised concerns that the report, which notes that “all modern wars have been associated with medically unexplained symptoms” and cites cases of anxiety, fatigue, and dizziness dating to the Boer Wars of more than a century ago, does little to dispel the notion that Gulf War illness has a psychological component.
“Nowhere in the report does it state the plain truth that ‘the excess of unexplained medical symptoms reported by deployed Gulf War veterans cannot be reliably ascribed to any known psychiatric disorder,’” Binns said, citing a 2010 IOM report.
“This is the latest in a series of efforts by VA staff to generate reports that support these scientifically discredited 1990s positions.”
Still, the panel’s recommendations contain a silver lining for veterans with Gulf War illness: It recommends VA stop using the nebulous term “chronic multisymptom illness” to describe Persian Gulf-war related health problems and use the widely accepted “Gulf War Illness” instead.
Many of the roughly 200,000 former troops who have symptoms of Gulf War illness, ranging from gastrointestinal problems to neurological conditions and respiratory ailments, detested VA’s use of the terms “chronic multisymptom illness” or “undiagnosed illnesses” to describe what they had.
“‘Chronic multisymptom illness’ is much too broad and generic and could very well be used to describe a number of other complex chronic medical conditions completely unrelated to Gulf War Illness,” said retired Marine Capt. David Winnett. “So I agree, until the medical and scientific evidence leads us to a more definitive description, let's call it what it is, Gulf War Illness.”
IOM panel members agreed. “Although chronic multisymptom illness is descriptive of the heterogeneity of the symptoms, it is not specific to the population and its unique experience. Thus, to capture the population of interest and the symptoms, a preferred term is Gulf War illness,” the members wrote.
VA spokeswoman Genevieve Billia said the department appreciates the work of the panel and remains “committed to continuing improvements in care and services for Gulf War veterans.”
“While IOM concluded there was insufficient evidence to develop a new case definition, VA agrees with their assessment that complex multisymptom illness is an important cause of disability and health issues for veterans as a result of their service during the 1990-91 Gulf War,” Billia said.