Activists successful in pressing government to look at link between MS, military service

From the Louisville, Ky. Courier-Journal Oct. 19:

For the first time, Congress has approved spending Defense Department money to research a possible link between multiple sclerosis and military service -- which could help pinpoint the cause of a disease striking 400,000 Americans.

The $5 million allocation will be awarded competitively to researchers.

"We are very, very happy," said Shawn O'Neail, vice president of federal government relations for the National Multiple Sclerosis Society. "This was the result of a grassroots movement across the country."

National and local MS activists credited a 2007 Courier-Journal story with helping drive that movement and leading to the federal money.

After the article detailed the potential MS-military connection, the disease was listed last fall as a research area eligible for Defense Department medical funding. And veterans began sharing their stories with lawmakers.

"When you did the story, it hit everywhere. Next thing you know, I'm testifying before Congress," said Bob Wolz, of Rineyville, Ky., a 43-year-old Gulf War veteran with MS featured in the article (pictured). "It's amazing what we were able to achieve in such a short amount of time. Just to know all these folks came together and stormed Capitol Hill is gratifying."

He's one of a growing number of Persian Gulf War veterans who have developed the chronic neurological disease, which suggests a link to toxic substances, such as chemicals used in weapons or smoke from oil well fires.

There's no known cause yet for MS, but experts suspect a genetic susceptibility, combined with some sort of trigger -- long thought to be an infectious agent such as a virus.

The disease -- which affects an estimated 4,500 people in Kentucky and southeastern Indiana -- occurs when a fatty tissue called myelin, which helps nerve fibers conduct electrical impulses, is lost.

"Gulf War data certainly increases one's concern that maybe there could be a toxic substance triggering MS," said Dr. John Richert, executive vice president for research and clinical programs for the MS Society.

Finding a chemical trigger, he said, would be "the first solid evidence" that toxins play a role.

The federally funded research will build upon recent studies hinting at a link between MS, military service and war.

A Georgetown University study, led by Dr. Mitchell Wallin and published in the Annals of Neurology in 2003, found higher-than-normal MS rates among veterans who served from 1960 to 1994, which the study said "strongly imply a primary environmental factor in the cause or precipitation of this disease."

Wallin identified more than 5,000 service-connected cases among veterans serving during those years.

A 2005 study in the journal European Neurology showed that MS among Kuwaitis more than doubled between 1993 and 2000. And other studies, which looked more generally at the problems dubbed "Gulf War Syndrome," mention the possible dangers of oil-well smoke, vaccines and sarin from the destruction of weapons.

Wolz, a former Army sergeant who also served in Operation Iraqi Freedom, believes his MS began during his tour of duty in 1990 and 1991.

A decontamination specialist with a chemical unit, he was in Kuwait when the oil wells burned, and he said he believes chemical exposure, or possibly anthrax vaccinations, could have brought on his illness.

During that tour, he suffered mysterious blackouts, and his left arm and leg got weaker and thinner. The problems continued at home, and doctors diagnosed him with MS in 2006.

Since being featured in The Courier-Journal in June 2007, Wolz has worked to bring attention and money to the cause. After getting a call from O'Neail of the MS Society, Wolz testified at a February 2008 briefing for congressional staffers, along with Georgetown's Wallin and a retired Army Medical Corps officer who also served in the first Gulf War and developed MS.

In June, Wolz testified before the Senate Appropriations Committee Subcommittee on Defense. Meanwhile, MS activists, who began seeking grassroots support for MS-military research in 2006, got more than 100,000 signatures on a petition. Other groups eventually signed on to the effort, including the American Academy of Neurology, the Paralyzed Veterans of America and Disabled American Veterans.

Wolz told the Senate panel in June that the stakes are high, the ramifications broad.

"Every hour, someone is newly diagnosed with MS," he said, according to a transcript. "It is the most common neurological disease leading to disability in young adults." Wolz and Dave Autry, deputy national director of communications for Disabled American Veterans, said they were surprised that Congress approved the money in such a tight budget climate.

"We've seen research money fall under the budget ax in the past," Autry said.

But the funding was part of a bill passed by the Senate on Sept. 27 and signed into law three days later.

Autry said he hopes the research yields findings that can protect future members of the military from getting MS.

Wolz said he hopes it can help today's MS sufferers, too. For now, he gives himself shots of interferon beta-1 three times a week to fight the disease, which causes fatigue, sensitivity to hot and cold and cognitive problems that make him struggle for words.

"If they find a trigger," he said, "they can start working on a cure."