Research Advisory Committee on Gulf War Veterans' Illnesses: http://www1.va.gov/RAC-GWVI/
Department of Veterans Affairs: http://www.va.gov/
Disabled American Veterans: http://www.dav.org/
National Gulf War Resource Center: http://www.ngwrc.org/
Veterans of Modern Warfare: http://www.modernveterans.com/
Those who came home and complained of symptoms such as memory loss and joint pain are even sicker. As their lives unraveled and their health further deteriorated, many were told their problems were just in their head.
But recently, many of the sufferers were given a new reason for hope. A high-profile advisory panel to Veterans Affairs Secretary James Peake earlier this month affirmed research showing that a collection of symptoms commonly known as Gulf War illnesses are real and require treatment. The country has a national obligation to help them, the panel concluded.
The report, however, also noted a sad reality: Of the $340 million in government funds spent to research the topic, little has focused on finding treatments. And, researchers said, the estimated 175,000-210,000 Gulf veterans who are sick aren't getting any better.
Many of those veterans are left wondering what's next for them. The panel, created by Congress, said at least $60 million should be spent annually for research, but some veterans question whether the money will be made available during a time when the economy is struggling.
"I just hope that our elected officials pay attention to it and they accept that it is true," said James Stutts, 60, of Berea, Ky., a retired Army lieutenant colonel and physician who struggles to walk. He gave up practicing medicine because of memory problems after serving in the war.
"It's not a stress-related, nor is it a psychosomatic, issue," Stutts said. "It is true. It is real. There is pain, not only for the veteran, but their families."
The sad irony, said John Schwertfager, a veterans advocate in Ohio, is that many of the veterans who came home physically sick and were told wrongly that they suffered from a mental condition. Now, after years of chronic pain and personal, marital or professional struggles, they're grappling with real mental health problems.
"A slow, steady deterioration is what I'm seeing," Schwertfager said.
Paul Sullivan, a Gulf War veteran who helped lead the fight on Capitol Hill to get help for the veterans, said it wasn't very long after the war ended that more veterans started complaining of symptoms such as fatigue, rashes, respiratory problems, diarrhea, headaches, muscle and joint pain, and nausea. When veterans wrote members of Congress, the lawmakers typically responded by contacting Pentagon officials who in turn wrote back saying there were no reports of chemical exposure, Sullivan said.
"They didn't tell Congress that they weren't looking," Sullivan said.
Cost was a factor. A 100 percent disabled veteran today is entitled to about $30,000 annually, which could easily mean more than $1 million in payments to veterans who live decades longer.
Compounding the problem was the complexity of the symptoms and uncertainty over the causes. Were they caused by combat stress? Was it vaccinations? Was it pills given to protect soldiers from nerve agents? Was it exposure to oil well fires or chemical weapons? Or a combination of factors?
Meanwhile, veterans like Jim Bunker, 49, an Army captain in the war who is today president of the National Gulf War Veterans Research Center in Kansas City, Kan., recalled getting the wrong type of treatment at the VA.
"They were like it's all psychological, it's all in your head, here are some antidepressants," said Bunker, who has severe headaches and has trouble walking, among other problems.
Since those early years, independent scientists have determined that the symptoms of the veterans do not constitute a single syndrome. They have pointed to pesticide, used to control insects, and pyridostigmine bromide pills, given to protect troops from nerve agents, as probable culprits for some of the symptoms.
Slowly, the veterans have made their case.
In 2001, after a government study determined that those who served in the Gulf War were nearly twice as likely to develop Lou Gehrig's disease as other military personnel, the VA said it would immediately offer disability and survivor benefits to veterans with the disease who fought in the war.
The veterans scored a legislative victory in 1998 with the passage of legislation that created the advisory panel that made the recent recommendations. In 2004, acting on its recommendations, then-VA Secretary Anthony Principi said that the agency would no longer pay for studies that seek to show stress is the primary cause.
It's not immediately clear whether Peake will act on the most recent recommendations. On Friday, he requested that the Institute of Medicine review them.
"I appreciate the committee's work on this report, and I am eager to see the results of further independent study into their findings," Peake said in a statement on Monday.
Most likely, it will be up to the incoming administration of President-elect Barack Obama and the new Congress to decide what to do next.
Since the panel's recent report, Julie Mock, president of the Veterans of Modern Warfare, said her group's e-mail inbox has been flooded with e-mails from Gulf War veterans hopeful that help could be on the way.
"Most of them are, 'Thank God. Somebody's finally fighting for us,'" said Mock, a Gulf War veteran who has suffered from fatigue, rashes and headaches and was diagnosed with multiple sclerosis in 2003 that she thinks is related to her war service.
Mock said she hopes the panel's recommendations will open the door for more Gulf War veterans to receive disability compensation.
Another organization, the Disabled American Veterans, is asking for more research for treatments. But it's also urging the VA to immediately appoint a working group to begin defining the health problems afflicting the veterans as something other than "undiagnosed" with the hope that would open the door for more Gulf War veterans to obtain benefits and health care.
"We don't want this to be studied to death," said Thom Wilborn, a DAV spokesman. "This is going to be affecting people for the next 20 years because some people who don't have it now may have it in the future."
Still, some veterans worry that nothing will change.
"I'm very jaded now. It's like, we've had our hopes up before. What makes this time different?" said Denise Nichols, a retired Air Force major who used to teach nursing but quit after the war because of memory problems.
Schwertfager, the Ohio advocate, said he's hopeful Obama will help the veterans because he thinks members of Congress "will see the report and go, 'That's bad, that's bad.' They'll issue a couple of press releases and, just like the past 17 years, it will be swept under the carpet nice and quietly."
Stutts, the Kentucky physician, said some days he can't get out of bed because of the pain, but he tries not to be bitter - even as he hopes that more help could some day be available.
"A lot of people have had it worse. They are now in Arlington cemetery. I can at least be thankful I'm still alive," Stutts said.