There are few diseases as contested, politicized and elusive as Gulf War Illness. Though it effects as many as 250,000 veterans of the 1990-91 conflict, we known little about why it struck that cohort or how it causes a cluster of chronic, medically unexplained symptoms.
The disorder is debilitating; patients often report fatigue, respiratory difficulty, gastrointestinal distress, and unyielding joint and muscle pain, but the symptoms are not uniform or universal. A report produced by the Institute of Medicine earlier this year defined the illness "as the presence of a spectrum of chronic symptoms in at least two of six categories—fatigue, mood and cognition, musculoskeletal, gastrointestinal, respiratory, and neurologic—experienced for at least six months."
Now, the IOM faces the task of developing a "consensus case definition" for the disease that will provide researchers and clinicians with clear guidelines on how to conduct effective studies and counsel patients about treatments.
Throughout this yearlong process, a panel of experts appointed by the IOM will extensively review scientific and medical literature on Gulf War Illness symptoms and offer its recommendation to VA by April 2014. This work, advocates say, is critical to ensuring that scientists focus on the right questions when designing studies and that physicians are well-educated about the disease's symptoms and how they might be treated with currently available medication.
Related: Critics Concerned Over VA's 'Sweeping' Changes To Gulf War Illness Research Panel
Dr. Kenneth Shine, a former IOM president who is chairing the committee, said it will be challenging to develop a new definition that is both specific enough to guide research but also sensitive enough to describe symptoms that a physician might see in a patient. It is also a unique task; Shine could not recall when the IOM was last charged with defining a disease.
Skepticism of the process also runs deep amongst some panel members. When the committee met for the first time on Wednesday in Washington, D.C., Anthony Hardie, a veteran and member of a federal research advisory committee on Gulf War Illness, testified that some experts had previously expressed views or been involved in research suggesting that Gulf War Illness is a psychiatric disorder, an explanation that is now disavowed by VA.
Shine, however, said that the field has evolved since those studies were published, a time when there was limited knowledge and data about the disease. "These are individuals who have very open minds on evaluating evidence," he said. "They are perfectly prepared to modify their views."
He said that panelists with medical expertise who have not researched the disease help "maximize objectivity" by providing an "independent" view since they have not received related funding from the Department of Defense or VA. Shine also said that one or two new experts may be added to address the debate over whether the committee has all the expertise it wants or needs.
Related: A New Step In Solving The Mystery Of Gulf War Illness
Jim Binns, the longtime chairman of the federal research advisory committee, said he remains concerned that the panel includes members that "represent discredited points of view" as well as psychosomatic and mental illness experts. Yet, he was encouraged to hear consensus over linking the new definition for the illness to Gulf War service. "The working definition published earlier this year by another IOM committee included half the illnesses known to man and would make research to discover treatments and diagnostic tests virtually impossible," he said in an email.
David Winnett, a retired Marine Corps captain with Gulf War Illness who attended the meeting, was also pleased that the definition will have a specific connection to wartime exposure rather than vaguely overlapping with similar diseases.
Prior to serving on the IOM committee, Winnett helped review research proposals as part of a different panel, and said the studies were "all over the map." In recent years, though, he noticed that scientists were increasingly focusing on neurological studies, which have shown promising results in explaining the mechanisms of Gulf War Illness. If the IOM can provide a more precise definition, it will give researchers critical guidance.
"At this point, all we can do is wait and see what they come up with," Winnett said of IOM's efforts. "I'm cautiously optimistic that we’re going to get a fair shake here, but only time will tell."
