“We’re not crazy”: Gulf War illness is real — deal with it, veterans tell national panel

gulfwarillness

By Cydney Gillis, Street News Service

In the final days of the first Gulf War in Iraq, Mark Nieves was a soldier in a unit assigned to destroying munitions dumps. When the war was over, he came home to Seattle and started college, joining Reserve officers’ training to further his career in the military.

His body, however, had other plans. As a junior in his 20s, Nieves began to notice that he couldn’t exercise without becoming unusually winded. He became drowsy and lethargic, saw blood in his stool and, after exercising, he started breaking out in head-to-foot hives the size of dollar bills — a condition for which he sought help early on from the Seattle veterans hospital, only to regret it.

Because no welts were visible during his first visit, “one resident doctor became irritated with me… yelling at me and kicking me out of the treatment area. I was humiliated in front of everyone,” Nieves told a national panel of doctors and veterans who visited the Seattle hospital in January. He went in a second time, he said, and was simply given a common anti-allergy medication.

“From that day,” Nieves said, “I gave up on the VA.” He never went back — a problem that, 17 years after the war’s end, the U.S. Department of Veterans Affairs is finally trying to address.

This past May, at the urging of veterans’ advocates, the secretary of Veterans Affairs appointed the 14-member Gulf War Veterans Advisory Committee to make recommendations on what the VA can do to help veterans such as Nieves, 38, who suffers from Gulf War illness, a collection of symptoms that includes skin rashes, mood changes, memory and respiratory problems, chronic headaches, fatigue, and all-over body pain.

After years of dispute about the existence and cause of the illness, a VA research committee that has been studying Gulf War symptoms since 2002 issued a report in November that not only officially recognized the illness and its prevalence for the first time — one in four of the 1991 war’s 697,000 veterans is affected, the report says — but linked it to two neurotoxins used during the conflict: pesticides and PB, or pyridostigmine bromide, which was administered experimentally to U.S. troops to counteract possible nerve agents.

PB has been used to treat muscular disease since the 1960s, but, in 2006, a report by the Rand Corp. revealed that the Department of Defense disregarded Food and Drug Administration recommendations for further testing and administered PB off-label in tabs of packaged pills given to roughly 250,000 Gulf War personnel.

“PB was presumably given to us because the Department of Defense  believed that the protection it would provide troops would be greater than the harm it might cause. But that’s not how it played out,” Julie Mock, president of Veterans of Modern Warfare, told the Gulf War Veterans Advisory Committee.

Mock and Nieves were among five veterans who testified Jan. 14 during a two-day fact-finding visit that the committee made to Seattle. The panel, chaired by retired Navy Capt. Charles Cragin, has made previous VA site visits in Washington, D.C., Baltimore, and Indianapolis. At the end of the two days here, however, many of its members said the work that one local doctor is doing with Gulf War veterans is a model that should be rolled out nationally — one of the possible recommendations that the group is due to make by year’s end.

Dr. Stephen Hunt is the director of the VA Puget Sound Deployment Health Clinic, which gives veterans a comprehensive work-up and multidisciplinary care to address symptoms related to exposure in particular wars, including Vietnam, the Persian Gulf’s Desert Storm mission, and the occupation of Iraq.

“Dr. Hunt is the one that has gotten people to start listening that there are (specific) conditions with Desert Storm,” says Navy veteran Beckie Wilson. “He has got a really good network of people there that work with him for Desert Storm and the guys coming back now.”

It’s an integrated approach that didn’t exist at the end of the Gulf War, in which Wilson, 58, served aboard ships as a data processor. Today, she suffers from a mysterious shaking disorder, bone disease in her back, and post-traumatic stress disorder. But the last time she tried to get help at the VA six years ago, she said, they sat her down with yet another psychological test — a common response that has led VA doctors to put many Gulf War veterans on anti-psychotic medication, Mock said.

But “I’m not crazy,” Wilson told the panel. “I do have these problems.”

Wilson says the jerking started during her service in the Indian Ocean, first with what she thought was merely a restless foot. Now there are nights, she says, when she can’t keep her body still in bed.
Compared with the general population, Mock told the panel, Gulf War veterans experience higher rates of certain diseases, including brain cancer, Lou Gehrig’s disease and multiple sclerosis. MS symptoms are a particular concern, Mock and retired Army Col. Liz Burris said, because the VA often treats them differently than civilian doctors would, diagnosing the symptoms as demyelination because they don’t meet the classic medical definition of MS.

Like MS, demyelination disrupts nerve function. The bureaucratic difference between the two, said Burris, who was diagnosed with multiple sclerosis in 2001 and later discharged from the Seattle VA’s MS care clinic with a diagnosis of demyelination, is that MS is considered a service-connected disability if it appears within seven years of discharge. Demyelination is not.
Mock urged the VA to correlate its data on diagnoses of demyelination to determine whether a PB-induced form of multiple sclerosis should be recognized. In the meantime, she called on the VA to recognize Gulf War symptoms as service connected, and to extend the current deadline for related disability filings by five years, from Sept. 30, 2011, to 2016.

“The risk [of PB] was known, but there has been no accountability for the risk taken,” Mock said. “It seems that we were looked upon collectively like an experiment gone wrong without regard for [us] as human beings.”

Reprinted from Real Change News, Seattle, Wash. © Street News Service: http://www.street-papers.org

5 responses to ““We’re not crazy”: Gulf War illness is real — deal with it, veterans tell national panel

  1. Dennis Murphy

    I don’t know if this will do any good since I have commented on other sites about my illness and have never gotten any reponse back. I spent 20 years and 12 day’s in the U.S. Air Force and retired on Dec. 1, 1995. I have always been active in sports and have hardly been sick a day in my life. I was deployed to KFIA in November 1990 with my unit of A-10’s for the Gulf War. Before going over we received the A-1 shot (anthrax) and a second A-2 shot . It wasn’t until after receiving the shots that we were told that anthrax shots have never been given to humans. While in country we would take the P- Tabs as we called them then. If memory recalls correctly we only took them for 2-4 weeks before they tolds us not to take them anymore. Most of my time was spent at KFIA but I was up in Kuwait by the oil well fires, at Ali Al-Salem Air Base just outside of Kuwait City and on “The Killing Road” were Sadams troops tried to flee back to Iraq but were stopped short of the border. I was in Saudi Arabia for 6 months during Desert Shield/Desert Storm. I returned to Dharan Saudi Arabia again for appx. 3 months in 2003 with a different unit. After retiring in 95, I didn’t have any significant health problems other than the usual cold until around June 2006. At that time I noticed that when I tried to jog that my left leg just didn’t pick up like it should and my left lower back started to have pain in it. Over the next two years I saw 4 different doctors and none of them could give me any answers. I went through more blood, urine tests and X-Rays than I want to remember. I then requested to see an Orthopedic doctor. After a lower back MRI showed a possible L1 disk problem I started going to therapy. This didn’t help, so on my second visit the doctor ask me about my medical history. After I related to him about my Gulf War service and the shots and pills taken then he referred me to his partner. He knew then what was wrong with me but since his partner has dealt with this before he want him to confirm. I had a second mid back MRI done which showed lesions but did not confirm anything. I was then sent to my fifth doctor, a neurologist. That turned into a third MRI of the brain which also showed lesions but still did not confirm the problem. That led to the final test, lumbar puncture, spinal tap as I call it. That test was sent to, I believe, Stanford University. My wife and I were in the doctors office when she received the E-mail from them confirming I had MS. Now I know that there is no proof that I got it from my time spent in the gulf war but if you go back through me and my familys medical history and find nothing it makes you want to believe all these articles about MS showing up in Gulf War vets. I have not tried to claim anything with the VA since my symptoms did not show up until 11 years after I retired far past the seven years allowed after the Gulf War. I have been on Copaxone shots every day for the past 5 months and have not shown any improvement. Actually in some sense if has gotten worse. I have my 6 month doctors visit in December so I guess we’ll wait and see how that goes. Thats my comment which is more like my life story. If any other Vets are out there that spent time at KFIA during Desert Shield/Desert Storm please contact me. Thanks for listening

  2. I WAS IN DESERT SHIELD AND DESERT STORM WHILE IN THE ARMY I ALSO TOOK ALL THE SHOTS AND THE PB PILLS I HAVE BEEN TOTALLY DISABLED SINCE 2001 AT LEAST THAT IS WHEN VA FINALLY REALIZED I WAS SICK AND WOULD NOT GIVE UP. I HAVE CFS FIBROMYLGIA CHRONIC SINUSITUS COPD SLEEP APNEA DEPRESSION HEADACHES WEAKNESS ON LEFTSIDE OF BODY CHRONIC HEARTBURN MUSCLE AND JOINT PAIN HAIRLOSS VISION PROBLEMS MEMORY PROBLEMS CANT EVEN PUT MY OWN SOCKS ON. VA DOES NOT CARE ABOUT US THEY JUST SEND US TO THE MENTAL HEALTH. I FOR ONE AM VERY DISAPPOINTED THAT OUR FELLOW AMERICANS WOULD ALLOW FOR US TO BE TREATED LIKE WE ARE. THERE ARE ENOUGH OF US SICK VETERANS TO GET OUR VOICES HEARD IF WE WOULD JUST OPEN OUR MOUTHS IF YOU DONT AGREE WITH YOUR DOCTORS TELL THEM YOU WANT ANOTHER OPINION THEY WORK FOR US NOT US FOR THEM, CALL YOUR GOVERNORS SENATORS CONGRESSMAN LET THEM KNOW WE ARE TIRED OF BEING LIED TO AND WE WILL SETTLE FOR NOTHING LESS THAN THE BEST CARE LIKE THEY GET FOR FREE, LETS GET OUR COMPUTERS FIRED UP AND OUR PHONES RINGING CALL THESE PEOPLE NOW NOT TOMORROW DO IT NOW WE DONE OUR JOBS IN THE WAR, NOW ITS TIME 20 YEARS LATER THEY DO THEIRS…..

  3. “Beckie Wilson was on a ship” yet she claims all these disorders from desert storm. to include PTSD. I don’t know the details but I call BS. unless she was sexually assaulted…let me guess she saw pictures of what the rockets did that were fired from the safety of her ship. I have no doubt she had a mental disorder when she went in. It’s sad theses type of frauds take away from the legit claims

  4. I am a veteran of desert storm. I was recently tested for MS the only thing they found was nuero retinitus. I found out today that I have COPD and they found this out a year ago in a chest x-ray. No one told me. This is all through the va. Does anyone have any suggestions or help.

    CO

  5. your truly, a Veteran - not a fraud

    I was on a ship. Do you not think it’s disturbing to watch the news of the burnt bloodied children of fallen bombs that you watch from dusk to dawn? Do you not suppose that your role in that, however safe you believe it to be, is not disturbing? Did you know that people on ships are attacked, alarms go off, including chemical alarms. Fraud? You are incorrect. Vaccinations, contaminated water. There are many factors that you may be unaware of. And so you seem to be opinionated rather than informed.

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