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No single therapy for veterans' chronic illness, but the suffering is real, IOM says

Published: Tuesday, Sept. 1 2015 9:09 a.m. MDT

Staff Sgt. Ron Hendrix playing cards in January 1991 with fellow squad members of the 419th Transportation Company during one of many late-night scud alerts at Khobar Towers in Dhahran, Saudi Arabia. (Deseret News archives) Staff Sgt. Ron Hendrix playing cards in January 1991 with fellow squad members of the 419th Transportation Company during one of many late-night scud alerts at Khobar Towers in Dhahran, Saudi Arabia. (Deseret News archives)

WASHINGTON, D.C. — A mysterious illness that has plagued nearly a third of veterans who served in the Gulf War is real, but not well understood, according to an Institute of Medicine report that says no simple treatment exists and customized care offers the greatest promise of relief.

The report, released Wednesday morning, calls on the Department of Veterans Affairs to reach out to soldiers who served in that and other conflicts in the Middle East to identify other cases, tailor care individually and conduct studies to see what works.

The panel said "chronic multisymptom illness,” the new name for what was once called Gulf War syndrome, has disrupted the lives of about one-third of veterans who served in that short-lived 1991 conflict. It's not known if their symptoms will eventually improve.

"The veterans who came home from the Gulf War suffer from a multiple array of long-term, medically unexplained symptoms that we have defined as chronic multisymptom illness," Dr. Bernard M. Rosof, chairman of the IOM panel that wrote the report and board chairman of Huntington Hospital in Huntington, N.Y., told the Deseret News. "It's a serious health condition and that's something we have to understand.

"It imposes an enormous burden of suffering — dysfunction in the working environment, dysfunction in the family setting and dysfunction socially," he said.

Iraq and Afghanistan?

The report said many soldiers returning from conflicts in Iraq and Afghanistan complain of similar symptoms. If it's shown that they, too, have CMI, it could mean many, many more veterans are affected; some 700,000 soldiers served in the Gulf War and as many as 250,000 exhibit CMI symptoms; by late 2011, 2.6 million Americans had served in Iraq and Afghanistan.

Existence of the illness has been questioned; the report says bluntly that it exists and must be treated, offering a series of recommendations on improving care. The attitude of doubt even within the VA system "must be changed," Rosof said. "Veterans feel that clinicians don't understand or believe their symptoms and they feel that they don't fully consider the whole person or explore their experience."

The study was ordered by Congress as part of a series on the Gulf War and health.

To be diagnosed with CMI, a soldier must have at least two symptoms across six categories that last at least six months. The categories include fatigue, mood and cognition, musculoskeletal, gastrointestinal, respiratory and neurologic symptoms. They may "overlap but are not fully captured by known syndromes" such as chronic fatigue, fibromyalgia or irritable bowel syndrome, the IOM panel said.

"Veterans who have CMI often have physical symptoms such as fatigue, joint and muscle pain and gastrointestinal symptoms, and cognitive symptoms such as memory difficulties," it said.

The committee said that the real cause of CMI might never be found, but noted that does not diminish its toll. "Despite considerable efforts by researchers in the United States and elsewhere, there is no consensus among physicians, researchers and others as to the cause of CMI," the report said. "There is a growing belief that no specific causal factor or agent will be identified."

Find and treat

Panelists called upon the VA to use electronic medical records to find others who have symptoms, establish a team approach that also embraces outside expertise and explore a range of treatment options, from biofeedback to St. John's wort and acupuncture, among others. Those are described as therapies that "could hold promise but lack robust scientific evidence of their effectiveness." The goal is to avoid under- or over-treatment.

That's another part of the VA's job, the IOM panel said — to test treatments and figure out what works in well-designed studies.

It’s a “hard thing” to watch so many veterans suffer from CMI and sometimes feel doubted, said Dr. Gavin West, a physician at the Salt Lake VA who treats many of them. “So it’s really neat to see the IOM come out and validate this.” He predicted the report would help veterans. “I think a lot of good is going to come out of this.”

As for whether some of the soldiers returning from Afghanistan and Iraq have CMI, “that’s the million-dollar question. It may very well be true, but I’m not sure personally.” He said the Salt Lake VA has been among those doing studies on that and related topics.

"One of the thing we think is extremely important is to evaluate what the VA already has in place for treatment of veterans that return from a Gulf war," said Rosof. "Evaluate them, get good data, see if it's working and, what's more, make it available and understood. Make the program available and understood to the veterans, the physicians, the teams of people who take care of these patients. See from the evaluation and data what works and doesn't work and go from there."

It also called upon the VA to have a "CMI champion" at each of its centers that would coordinate care and provide information and advice about how best to serve CMI-afflicted veterans.

"We think they deserve the best of care for what they have given," said Rosof of veteran service.

"You also have to recognize that the (VA health system) faces extraordinary challenges in caring for the populations of veterans who have CMI. We believe it is possible to meet those challenges, with adequate clinician support, organization and preparation of care teams that fit their needs better. I think it's all doable and I think they believe they are on the pathway to accomplish that."

The study was sponsored by the U.S. Department of Veterans Affairs.

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