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Saturday, May 22, 2010

DoD, Michael Kilpatrick, spin IOM’s report into focus primarily on psychiatric issues

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Written by Anthony Hardie

(91outcomes.com) – In a new article by the U.S. Department of Defense, the latest findings by the Institute of Medicine (IOM) related to Gulf War veterans’ illnesses are twisted or outright ignored, focusing on psychiatric conditions including at least one not even named in the IOM press release while nearly ignoring the very real physical health issues that IOM noted affect more than one-third of Gulf War veterans.

“The excess of unexplained medical symptoms reported by deployed Gulf War veterans cannot be reliably ascribed to any known psychiatric disorder,” said the Institute of Medicine in its comprehensive scientific review last month, which also said that 250,000 veterans of the 1991 Gulf War suffer from chronic multisymptom illness.  This debilitating health condition affecting one third of Gulf War veterans is more commonly called Gulf War Illness or Gulf War Syndrome.

However, the DoD article misses many of the health conditions linked by IOM to Gulf War service, and reorders those it does list to put the psychiatric conditions first. 

For many years, Gulf War veterans have complained about federal government spin that left them without needed health care for the underlying conditions causing their chronic, multiple symptoms. 

This latest DoD release is likely to be met with anger by Gulf War veterans.

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The IOM report press release and link to the full report is located at:  http://www8.nationalacademies.org/onpinews/newsitem.aspx?RecordID=12835

Comments can be posted to the DoD article, located at:  http://www.health.mil/blog/10-05-20/Institute_of_Medicine_Releases_Gulf_War_Illness_Report.aspx

The comments feature on the DoD webpage is monitored.  Two comments left earlier today have yet to show on the DoD website, one of which was as follows:

Shame on you, DoD, for twisting IOM's release into yet one more story that focuses on psychiatric issues (PTSD affects roughly 10-11%) when the real story about more than 250,000 Gulf War veterans is elsewhere.

IOM's own release listed the causal condition first, as they always do. Of course war causes PTSD in some veterans; that's hardly news.

IOM's release then went on with the following: "and is also associated with multisymptom illness; gastrointestinal disorders such as irritable bowel syndrome; substance abuse, particularly alcoholism; and psychiatric problems such as anxiety disorder."

Finally, IOM stated the conditions for which there is some evidence of links to the Gulf War: "There is some evidence that service during the conflict is linked to fibromyalgia and chronic widespread pain, amyotrophic lateral sclerosis, sexual difficulties, and death due to causes such as car accidents in the early years after deployment."

In this press release, those of you responsible at DoD were utterly irresponsible, including reversing the order of the conditions listed by IOM by their order of strength, and omitting quite of few of them entirely.

Scientists briefing the VA believe they have found causes, and believe that effective treatments can be developed that might improve the health and lives of ill Gulf War veterans. THAT brings real hope to Gulf War veterans; this DoD press release is just more spin by the same people like Michael Kilpatrick, who have been denying Gulf War veterans even THAT piece of mind for far too long.

Kilpatrick seems to have missed the IOM's own release, which said, in part:

"The report calls for a substantial commitment to improve identification and treatment of multisymptom illness in Gulf War veterans. The path forward should include continued monitoring of Gulf War veterans and development of better medical care for those with persistent, unexplained symptoms. Researchers should undertake studies comparing genetic variations and other differences in veterans experiencing multisymptom illness and asymptomatic veterans. It is likely that multisymptom illness results from the interactions between environmental exposures and genes, and genetics may predispose some individuals to illness, the committee noted. There are sufficient numbers of veterans to conduct meaningful comparisons given that nearly 700,000 U.S. personnel were deployed to the region and more than 250,000 of them suffer from persistant, unexplained symptoms. A consortium involving the U.S. Department of Veterans Affairs, U.S. Department of Defense, and National Institutes of Health could coordinate this effort and contribute the necessary resources."

"The committee concluded that multisymptom illness is linked to Gulf War service, based on the availability of a number of good-quality surveys documenting increased reporting and occurrence of multiple, unexplained symptoms among veterans from several countries that sent troops, including the United Kingdom and Australia. "

"Veterans who continue to suffer from these symptoms deserve the very best that modern science and medicine can offer to speed the development of effective treatments, cures, and -- we hope -- prevention. Our report suggests a path forward to accomplish this goal, and we believe that through a concerted national effort and rigorous scientific input, answers can be found.""

How much longer do veterans have to wait before people like Kilpatrick -- who has long been focused on "stress" as a cause of hundreds of thousands of Gulf War veterans' illness -- are finally removed by the new Administration?

And, it’s pretty disingenuous to lay out all those big numbers of studies and their cost without breaking them down. For example: How many of those studies have been focused on stress and psychiatric issues as what's wrong with Gulf War veterans?100? 200? 300? More? Yet, despite the constant, heavy focus on stress and psychiatric causes by DoD of the past and, apparently, the present, the results are clear in the IOM report’s words, which you at DoD chose to omit: “The excess of unexplained medical symptoms reported by deployed Gulf War veterans cannot be reliably ascribed to any known psychiatric disorder.”

And, how many of that large number of expensive studies have been focused on PB pills and pesticides? Not many, right? How about on reversing the damage? None, right?

How many studies have surveyed veterans of the Gulf War to ask them specifically which chemical warfare agents they believe they were exposed to, and the basis of that belief? None, right?

How about ALS studies that have led to effective new treatments? Sadly, more than 70 years after Lou Gehrig died of the disease, there ‘s only one, and it only prolongs life with ALS by a handful of months.

Of those studies, Mr. Kilpatrick, exactly how many have focused on inhaled or ingested Depleted Uranium dust? Any?

VA's new leadership is taking Gulf War Illness issues in the right direction, and are a shining light and a beacon of hope. Despite the fact that it's now nearly 20 years since the Gulf War, better late than never. And now, it's high time for DoD to get it right, too.

Come on, DoD -- there's real work to do. Our disabled Gulf War veterans deserve no less, and future generations of troops will depend on us finding effective treatments -- and prevention -- TODAY.

Thursday, May 20, 2010

NGWRC’s annual Health & Educational Fair, Reunion for Gulf War veterans to be held in Dallas in August

(Kansas City – NGWRC) - The National Gulf War Resource Center (NGWRC) is pleased to announced its’ annual Health & Educational Fair for veterans who served in Southwest Asia. This years event is to be held in Dallas, Texas, Thursday August 5th through Sunday August 8, 2010. 

The featured Guest of Honor at the event will be Mr. H. Ross Perot, a distinguished American businessman, former Presidential Candidate, staunch supporter of the United States military and veterans causes and a veteran him self.  During the event Mr. Perot will be honored with the National Gulf War Resource Center’s 20th Anniversary Desert Storm Patriot Award.

Many thousands of veterans have been afflicted with an array of chronic illnesses directly resulting from their service. Now with the Veterans Administration (VA) opening up those covered under gulf war illness to veterans of OEF and OIF, there will be a lot of information given out to help them.

The VA’s Research Advisory Committee on Gulf War Veterans’ Illnesses announced in November 2008 that one in four veterans of the PGW suffer from chronic illness.  In April of  this year the Institute of Medicine (IOM) released their report that acknowledged a relationship between ones service in Southwest Asia and their multisymptom illnesses.

NGWRC and other veterans organizations continue to advocate on behalf of these veterans for treatment and disability compensation and to push for annual research funding that may one day lead to a cure.

Our four-day event will feature a number of distinguished speakers who will discuss ongoing research into Gulf War Illnesses (GWI) and other related topics, including Dr. Robert Haley from the University of Texas, Southwestern Medical Center.  Dr. Haley and his colleagues have made great strides in epidemiologic, clinical and laboratory research on GWI since March of 1994.

The VA’s Research Advisory Committee on Gulf War Illnesses  will be represented by the well known researcher Lea Steele, PhD.  She will be covering the different research programs that have been completed. Dr. Steele will also cover what research is going on and how imperative it is for veterans to take part.

The Department of Veterans Affair’s War Related Illness and Injury Study Clinic (WRIISC), on the request of the NGWRC, will present information to the veterans about their program. The NGWRC has also set it up for them to visit the Dallas/ Ft. Worth area VA and put on classes for the staff about gulf war illness.

U. S. Secretary of Veterans Affairs Eric Shinseki has been invited to be our key note speaker on August 7th and his Chief of Staff John R. Gingrich. Mr. Gingrich the highest ranking gulf war veteran working for the VA.

All veterans are invited regardless of their periods of service.  Details are available at http://www.facebook.com/l/3a922;www.ngwrc.org/ or by calling toll-free; (866) 531-7183

James A. Bunker

President

Blast from the Past: Three-Fourths Of Gulf War Chemical Logs Are Missing -- More Disk, Paper Copies Lost Than First Reported

Written by John Diamond, AP, February 27, 1997

(WASHINGTON – Associated Press) - More than three-quarters of the chemical-weapons logs kept during the Persian Gulf War are missing, far more than the eight days' worth previously disclosed, the Pentagon reported today.

A computer virus imported by an officer who brought some computer games to Gulf War headquarters may have wiped out half the logs, the report said. Two sets of the logs on disk and a paper copy shipped to U.S. Central Command headquarters in Florida after the war appear to have been lost from a safe in an office move. A third disk set and hard copy were lost from a safe at Aberdeen Proving Ground, Md.

Gulf War veterans concerned about unexplained illnesses that have afflicted them are anxious to know whether the logs mention chemical-weapons releases. Many believe chemical weapons - which the Pentagon says were not used by Iraq during the war - caused their illnesses. And some veterans charge the Pentagon with covering up the full release of records.

"The Pentagon has botched not only the handling of the records but also the investigation of the handling of the records," said Paul Sullivan of the National Gulf War Resource Council, a veterans group.

Matt Puglisi, director of Gulf War issues for the American Legion and a veteran of the 1991 conflict, said that having been in the military he can understand the bureaucratic foul-ups that could lead to the loss of records.

"But there's certainly the appearance of a cover-up, and that

needs to be investigated aggressively," Puglisi said.

The new Pentagon report, disclosed at a hearing of the Senate Armed Services Committee, concludes that only 36 out of about 200 pages of the logs can be found. "This expectation is based on an assumption that one page of log was written for each day in theater from August 1990 to March 1991," the report said.

Previously, the Pentagon had said it was unable to locate records from a critical eight-day period in March 1991 immediately after the Gulf War, when Army demolition teams blew up Iraqi storage bunkers now believed to have contained chemical warheads. More recently, Bernard Rostker, the Pentagon official in charge of Gulf War illness issues, has warned that much more than eight days appeared to be missing. Today's report confirms Rostker's statements.

The logs were kept throughout the Gulf War by a nuclear-, chemical- and biological-weapons watch desk intended to track any events relating to these weapons.

Testifying today, retired Army Gen. H. Norman Schwarzkopf, the Gulf War coalition commander, said he had no reports of chemical-weapons releases.

"And believe me, we were looking," Schwarzkopf said. He dismissed the idea that chemical weapons caused Gulf War illnesses because, "we're talking about something where one milligram on your skin is fatal, and we never had a single report of a serious illness or fatality among 540,000 troops."

Coalition leaders actually hoped they would catch Iraqi leader Saddam Hussein turning loose chemical weapons to help them highlight his brutality, Schwarzkopf said.

Kuwait returns remains of Gulf War Iraqi soldiers

(SAFWAN, Iraq – Reuters)  - Kuwait returned to Iraq on Monday the remains of 55 Iraqi soldiers killed in the Gulf War in 1991, a month after they were found in a mass grave.

Iraqi troops shouldered the remains in coffins draped with Iraqi flags during a ceremony in the town of Safwan along the border in a sign of cooperation between neighbours that have had a testy relationship since Saddam Hussein’s army invaded Kuwait nearly two decades ago.

Mahdi al-Temimi, an official in Iraq’s Human Rights Ministry, said the remains were found together in a grave in the Mutlaa area in northern Kuwait and 12 of the 55 had been identified.

“The rest are still unknown and we hope that we will identify them by using DNA tests and tissue analysis,” Temimi said.

“This is the fifth time we have received remains of Iraqi soldiers from Kuwait and we have received more than 100 so far.”

A Kuwaiti embassy official said Iraq had handed over the remains of 280 Kuwaitis killed during the Gulf War.

More than 360 Kuwaitis and others who lived in Kuwait when Iraq invaded are still unaccounted for.

New research studies fibromyalgia tissue

(WFRV News) - Fibromyalgia can be a debilitating disease. But now researchers may be on close to discovering how the syndrome works.

The contents of these containers could solve the mystery behind fibromyalgia. "Fibromyalgia is a syndrome of chronic pain and tenderness affecting soft tissues of the body, muscles, ligaments and tendons," says Dr. Sandra Jacobson.

Doctors are studying brain and spinal tissue, donated by fibromyalgia patients after death. "The ultimate goal is to figure out, what is the approximate cause of symptoms in this condition and to target therapies in that regard," says Dr. Jacobson.

Roxanne Fogerty has had fibromyalgia since 2003, and has agreed to donate. "I've already been an organ donor. I have got that on my driver's license. And I thought, well, I could go do that and help somebody in the future," she says.

Before the final donation, participants have to come in annually for tests. "They do a lot of cognitive testing and where they ask you a lot of questions. They might say thirty or forty words and then ask you to repeat them," says Roxanne.

The research is focusing on glial cells. These are supportive cells in the central nervous system and are thought to cause pain. Doctors believe when activated, they cause an inflammatory response in the body.

"Once we are able to identify the site of the problem, then we can more accurately target treatments for that," says Dr. Jacobson.

But it'll take time. Researchers hope to get 200 volunteers willing to donate their tissues to this important science. So far, 50 fibromyalgia patients have signed up for the study.

Clinical depression often blamed before diagnosis of real disease

Fibromyalgia, Chronic Fatigue common in Gulf War veterans

Written by Vivian Song

(HealthZone.ca) - When Joanne Saraiva went to her doctor for her chronic pain and fatigue and debilitating mental fog, the physician chalked it up to depression and sent her to a psychiatrist.

She was just depressed, her doctor said, and had taken on too much. After all, Saraiva, now 50, had changed jobs, was raising two boys and had suffered a loss in the family.

Desperate to get better and resume her normal life as a busy, active mom and career woman, Saraiva complied and was popping anti-depressants to treat her degenerating health. She was constantly exhausted and was always in pain.

“It was like someone took a bat and beat me up all over,” Saraiva says in her Brampton home. “Like I was walking on nerve endings.”

While she could endure the pain, it was the cognitive decline that most alarmed her.

“It felt like someone was pulling down the blinds on the window,” she says. “My energy, concentration, ability to process information, word retrieval and perception were all going.”

But after a year of visits, the psychiatrist looked at her and confirmed what, deep down, Saraiva always knew.

She wasn’t depressed. There was something else more insidious at play.

“I know my own body. I wasn’t sad over anything. And in fact, I work better under stress, that’s who I am,” she says.

Misdiagnosing illnesses like fibromyalgia, myalgic encephalomyelitis or chronic fatigue syndrome, and multiple chemical sensitivities as psychiatric problems and figments of the imagination is common practice among today’s doctors who lack a general understanding, says Dr. Riina Bray.

“We have to educate physicians so that they don’t blow patients off as looney,” says the medical director of the Environmental Health Clinic at Women’s College Hospital. “That’s probably the easiest way out, to blow them off as psychiatric issues.”

But there’s a huge difference between people who suffer from depression, and those who suffer from legitimate medical conditions, adds Alison Bested, a hematological pathologist and specialist at the same clinic.

People who are depressed, for instance, are so low emotionally they can find little inertia to get going and have lost all enjoyment of life, Bested says. Meanwhile, those who suffer from one or a combination of the three illnesses live for their good days, she says.

“On a good day, these people are off to the races.”

It would take years for Saraiva to get an official diagnosis and understand what was wrong with her. She suffers from chronic fatigue syndrome, characterized by pathological exhaustion that cannot be reversed by rest — she’s incapable of deep, restorative sleep. She also suffers from fibromyalgia, chronic pain throughout her body. Both can be traced back to a series of viral infections that left her bed-ridden, a common trigger. With these illnesses, brain fog is also common.

Saraiva was misjudging the stairs and would draw complete blanks at work where she multi-tasked as a senior clerical worker. Suddenly, simple tasks eluded her: She couldn’t remember how to put people on hold, and was reduced to writing cheat sheets on how to log on to the computer she’d been using for years.

For the 440,000 Ontarians who suffer from either one or a combination of these illnesses, getting an official diagnosis is often half the battle, said Jeanne Samonas, president of the Myalgic Encephalomyelitis Association of Ontario.

“It blows your mind that that number of people — the size of a city — are not getting diagnoses or treatments,” Samosas says.

That’s because there are few specialists in Canada with the training to diagnose and treat the three illnesses, which often strike as a package deal. The Environmental Health Clinic at Women’s College Hospital in Toronto is one of two clinics in Canada — the other being in Nova Scotia — where patients can seek help.

“It’s a huge problem,” Bested says. “There are only a handful of doctors trained on the pathology of these illnesses and there’s virtually no ongoing research which is deeply needed.”

Twenty years ago not a word was written about these illnesses in textbooks, she says. Fibromyalgia, for example, was added in the World Health Organization’s International Classification of Diseases in 1992.

“Physicians my age and older haven’t had the education or training to diagnose these illnesses,” Bested, 56, says. “I learned about this because people were coming to me with the illness.”

Saraiva only got her official diagnosis after doing her own online research, which led her to the Toronto environmental clinic. She was put on a 10-month waiting list.

“Doctors didn’t know what to do with me,” Saraiva says. “I had to become my own advocate.”

During the waiting period, Saraiva battled her employer’s insurance company for long-term disability payments: Company doctors ordered her to go back on anti-depressants and join a gym. She was given a pedometre and had to clock 800 steps a week. They also treated her illnesses as a psychiatric, lifestyle choice, despite appeals from her own psychiatrist and doctor who wrote on her behalf.

Similarly, she was denied three times for Canadian Pension Plan disability benefits and had to take the case to a tribunal which ruled in her favour.

“We’re dealing with powerful, wealthy insurance companies who have a bottom line,” Samosas says. “A lot of people have had horrendous cases in court with CPP and fight for years.

A lot of that stems from the fact that fibromyalgia, chronic fatigue syndrome and Multiple Chemical Sensitivities aren’t recognized as chronic illnesses, Bested notes, and consequently receive no funding for research. Nor do they figure well in resident training.

“At the government level, they’re invisible.”

Yet last month, Canada became the first country in the world to ban blood donations from people diagnosed with chronic fatigue syndrome in the wake of groundbreaking study published in the prestigious journal Science, advocates point out. U.S. researchers discovered a human retrovirus, XMRV, that could be linked to CFS. The move was a precautionary measure as it’s feared the virus, which closely resembles the AIDS virus, could be transmitted through blood transfusions. Australia followed suite a few weeks later.

“We can’t get funding because we’re not considered a chronic illness, and yet they won’t take our blood,” Saraiva says.

In a rare public display, sufferers organized a rally at Queen’s Park May 12 to mark International ME/CFS & FM Awareness Day and appeal for a treatment centre.

According to the results of a 2005 Canadian Community Health Survey prepared by Statistics Canada, of 23 chronic health conditions, chronic fatigue, chemical sensitivities and fibromyalgia topped the list for unmet health care needs.

“After diagnosis that’s where it all ends for a lot of people,” Samonas says.

Saraiva is still looking for someone to treat her. She misses the woman she used to be: The woman who others called “supermom,” who jogged three times a week and was the go-to person at work whenever there was a problem.

“It’s time,” she says. “It’s time that we’re recognized and we get treatment and funding.

Monday, May 17, 2010

Ill Gulf War Veteran on Cross-Country Bike Trek to Honor Fallen Soldiers, Dies Enroute

(NORMAN, Okla. – Associated Press)  — A disabled Gulf War veteran who left Norman earlier this month [March 2010] on a hand-propelled bicycle headed for Washington, D.C., to honor fallen soldiers has died.

Kevin Baker suffered a seizure Friday morning in his sleep at the home of some friends in Lake Charles, La., said Norman resident Diane Zellner. He died in an ambulance en route to a local hospital, Zellner said she was told.

Baker, a 39-year-old Navy veteran, had a history of seizures, stemming from a traumatic brain injury, she said. He also had been diagnosed with lymphoma.

Baker had planned to ride his bicycle from Norman to Washington, D.C., and Gettysburg, Pa., to Marseilles, Ill., to support a new flag designed to honor fallen members of the military, the Norman Transcript reported March 8.

He planned to fly the Honor and Remember Flag from his bike and encourage people along the way to sign a petition urging Congress to adopt the flag as a new national symbol by passing HR Bill 1034.

“He made a valiant effort to promote this new flag, the Honor and Remember flag for the Gulf War dead, and unfortunately it took his life, too,” said Jim Zellner, who also knew Baker.

Baker was injured while serving as a firefighter in Kuwait in the 1990s when a Scud missile struck his barracks. Diane Zellner said he had seemed healthy enough to undertake the bike trip.

“He was doing well, so this kind of took us by surprise,” she said.

Baker struggled with his health, but what people admired about him was how he moved forward despite his health problems and disabilities, she said.

“He struggled every day, but he lived, he was going to do what he wanted to do,” she said.

Before he died, Baker made several blog posts from the road that can be read at the Honor and Remember Web site. His last post was Wednesday near Sherman, Texas.

He said the weather was raining and 34 degrees, so he said the Honor Guard from Louisiana would pick him up and take him somewhere warmer.

“He was doing something he loved,” Diane Zellner said. “This was something he was passionate about.”

Iraqi technicians dismantling Saddam Hussein's nuclear plants

Written by Frederik Pleitgen and Yousif Bassil, CNN

(Tuwaitha, Iraq  - CNN) -- The shell of former Iraqi strongman Saddam Hussein's efforts to produce a nuclear bomb is being slowly dismantled along the banks of the Tigris River, but its radioactive legacy lingers on.

The Tuwaitha research complex, about 18 kilometers (11 miles) southeast of Baghdad, was bombed by Israel in its 1981 airstrike on Iraq's Tammuz 1 research reactor. It was bombed again during the Persian Gulf War of 1991, and it was looted extensively after the 2003 U.S. invasion that ousted Hussein.

Now, engineers and technicians are working to dismantle the laboratories and equipment at the site, but the extensive contamination left behind complicates their work.

"It is difficult because of the destruction," said Anwar Ahmed, the project manager at Tuwaitha. "This facility was bombed in 1991. Now, finally the decision was made to decommission all the destroyed facilities."

Workers and visitors have to wear protective suits and masks around the facility, where about 20 people are at work so far. Iraq's ministry of Science and Technology said it is training more specialists to decommission the facility, but acknowledged the cleanup could take decades.

"We have 18 facilities in Tuwaitha," said Fuad al Musawi, Iraq's deputy science and technology minister. "We have another 10 facilities around the country. So you can imagine how long it will take."

Iraq's nuclear ambitions date back to the 1960s, when it obtained a Soviet-built research reactor. It built another, French-designed reactor in the 1970s. Israel's concerns about the program led to the 1981 raid, in which Israeli pilots flew across then-hostile Jordan and a corner of Saudi Arabia to strike the facility.

Despite the damage inflicted by that attack, Iraq began attempting to produce enriched uranium -- a step toward producing a nuclear weapon -- during the Iran-Iraq war in the 1980s, the U.S.-led Iraq Survey Group reported in 2004. It accelerated that program after its 1990 invasion of Kuwait left it facing an international military coalition that ultimately drove out the Iraqi forces.

The bombardment that accompanied the 1991 war inflicted extensive damage to the Tuwaitha plants. The U.N. sanctions and inspections imposed after 1991 forced Hussein's government to abandon its nuclear program, the ISG concluded.

After the 2003 invasion, which was launched after the United States incorrectly accused Iraq of having restarted its nuclear, chemical and biological weapons programs, nearby Iraqis inflicted further damage by looting the unguarded facility. Villagers nearby complained of symptoms that local doctors attributed to radiation sickness, particularly from using containers taken from the plant to store drinking water.

The Iraq Survey Group found basements full of radioactive water in some of the buildings, and the U.S. military later spent $70 million ensuring the safe transportation of 550 metric tons of non-weapons grade uranium oxide -- known as "yellowcake" -- to Canada.

Some Iraqi scientists still hope to start a civilian nuclear energy program in the future. But for now, Iraq is still grappling with the shadow of its past.

Gulf War logistics director donating documents to Fort Lee

Written By Jeremy Slayton (Staff Reports)

(Richmond Times-Dispatch) - Retired Army Lt. Gen. William Gus Pagonis, who served as the director of logistics during the Gulf War, will donate his extensive collection of logistical documentation to the Army Logistics University at Fort Lee.

The donation will include videotapes, after-action reports and other material collected during the Gulf War. Soldiers training in logistics at Fort Lee will be able to review the collection.

"The more people can study and research history, the better they become," Pagonis said in a news release.

He has maintained the collection, which includes a variety of documents ranging from operational orders to more than 2,000 taped interviews, since the end of the Gulf War in 1991; he will officially donate them to the university during a ceremony this morning.

Pagonis, who commanded all Army soldiers, National Guardsmen and reservists working in logistics during the Gulf War, assembled a three-soldier history team charged with documenting every aspect of planning and preparation during the war. He retired from the Army in 1993 and now is vice chairman for GENCO Supply Chain Solutions.

Saturday, May 15, 2010

Gulf War Veterans Remain in Pain

... using fibromyalgia to understand why

(Fibromyalgia Network) - Nearly 100,000 veterans of the first Gulf War have chronic musculoskeletal pain that significantly impairs their function. It's been more than 15 years since these dedicated veterans with Gulf War Illness (GWI) returned from the war and their symptoms persist without a valid explanation.

Dane B. Cook, Ph.D., at the University of Wisconsin in Madison, says that only a "dearth of experimental research directed at pain" has been conducted in GWI, but he suggests that "insight can be gained from research on civilians with fibromyalgia." Cook says that there are some differences between the Gulf veterans with chronic pain and people with fibromyalgia. Most predominately, GWI tends to occur in men exposed to the chemically harsh environment of war while those with fibromyalgia are mostly women whose symptom onset is highly variable but not war-related. What causes or triggers the onset of these two conditions may differ, but what sustains the pain in GWI and fibromyalgia may be very similar processes, according to a series of experiments by Cook.1

Brief and vigorous exercise in healthy young individuals is known to lead to reduced pain sensitivity, often referred to as the "runner's high". However, the opposite occurred in people with fibromyalgia who were asked to ride 30 minutes on a stationary bicycle.2 Cook proposed that veterans with GWI who also had widespread pain similar to fibromyalgia would rate a 30-minute bout of submaximal bicycling exercise as more intense, more painful, and would be more sensitive to pain stimuli when compared to healthy veterans who also served in the first Persian Gulf war. Both groups were physically fit when they were deployed, but upon their return, the GWI group had many unexplained symptoms, including widespread pain.

The recruitment of male research participants who served in the first Persian Gulf war was based on whether they had widespread pain that could not be explained by another illness (such as rheumatoid arthritis). Veterans with regional pain and injuries were also excluded from the study along with rheumatoid arthritis and similar diseases. Eleven participants were classified as having GWI with unexplained widespread pain and 16 met the criteria for the healthy controls.

"Despite exercising at a lower power output, Gulf veterans with chronic musculoskeletal pain still became more sensitive to experimental pain stimuli postexercise," states Cook and colleagues. Leg muscle-pain intensity ratings increased throughout the exercise bout in both groups, but the GWI group with chronic widespread pain reported higher pain ratings that ramped up at a faster rate than the healthy group.

"A significant number of military personnel are no longer able to perform their duties due to multiple symptoms including pain, fatigue, and cognitive troubles," writes Cook. He emphasizes that pain is just one of three factors describing GWI, but considering the lack of experimental data on this condition, Cook adds, "we modeled the design of the present study on similar research conducted in fibromyalgia." The reasons for this are rather straightforward. Psychophysical testing of experimental pain in fibromyalgia has provided strong evidence of abnormal pain processing and now establishes a foundation for future studies that are likely to produce more evidence of abnormal functioning in GWI.

Based on findings in fibromyalgia, the present study suggests a failure of the pain regulatory system in the spinal cord. This would be expected to lead to increases in naturally occurring muscle pain during exercise and exaggerated central nervous system sensitivity following exercise. Repetitive stimulation of the painful sensory receptors in the peripheral muscles during physical exertion is likely the mechanism by which the chronic musculoskeletal pain is maintained in GWI. This is a similar phenomenon observed in a predominantly female population of fibromyalgia patients.

"Exercise research in chronic muscle-pain patients has brought an interesting paradox to light," writes Cook. "Acute exercise appears to exacerbate pain while chronic exercise can reduce pain and improve other symptoms associated with chronic pain."

Last year at the American Pain Society meeting, Cook demonstrated that mild bicycling at an easy level of resistance produced improvements in pain for people with fibromyalgia. More recently, Kevin Fontaine, M.D., of Johns Hopkins University, showed that a prescription for 30 minutes of "lifestyle physical activity," or LPA, up to five days per week significantly reduced pain and improved overall function compared to a group of fibromyalgia patients who attended a series of educational sessions. Daytime fatigue scores and mood remained unchanged for both groups.3

The subjects in the LPA group were instructed to incorporate five to seven bouts of additional daily activities, such as walking, taking the stairs instead of the elevator, housework, gardening, or anything else that gets them moving for a few minutes. The level or intensity of the activity should increase breathing demands but not so much that a person cannot hold a conversation. Initially, the patients began at 15 minutes per day of LPA and worked to 30 minutes by the fifth week (i.e., increasing 5 minutes per week). All subjects wore a waist-mounted pedometer to record the number of steps they took each day and to determine if patients were following instructions.

Before the study, fibromyalgia patients averaged 3,800 steps per day. At the end of the 12-week study, the LPA group increased to an average of 5,800 steps per day, representing a 54 percent increase. Unlike most treatment interventions involving exercise, the dropout rate for the LPA group was small (13 percent) and it was the same as the education group used as a comparison.

"One thing seems clear from the fibromyalgia literature," writes Fontaine, "people with fibromyalgia have difficulty adhering to exercise. Indeed, in fibromyalgia clinical exercise trials dropout rates often nearly exceed 30 percent, suggesting that developing exercise interventions that can be sustained is perhaps as important a goal as finding the particular interventions that produce optimal benefits."

  1. Cook DB, et al. J Pain March 23 [Epub ahead of print] 2010.
  2. Vierck CJ, et al. J Pain 2:334-344, 2001.
  3. Fontaine KR, et al. March 30 Arthritis Care Ther 12(2):R55 [Epub ahead of print] 2010

Wednesday, May 12, 2010

Gulf War Syndrome - Washington's Dirty Little Secret

Written by Bryan Brandenburg

(bryanbrandenburg.blogspot.com) - In November of 2008, the Committee on Gulf War Veterans' Illnesses presented a 450 page report to Secretary of Veterans Affairs James Peake. The report stated that the Gulf War Syndrome (GWS), previously dismissed as a psychosomatic disorder, is a very real illness affecting between 25-50 percent of the 700,000 U.S. Veterans who participated in the 1991 Gulf War.

GWI was likely caused by repeated exposure to toxic chemicals, including overused pesticides, drugs given to the U.S. troops for protection against nerve gas, smoke from oil fires, anthrax vaccines, and exposure to depleted uranium. Additionally, a 2004 British study found that Gulf War veterans (GWV) were 40-50 percent more likely to be unable to start a pregnancy and were 2 to 3 times more likely to having children with birth defects.

Pesticides

According to the report, 62 percent of ground troops interviewed reported some form of pesticide use. Forty-four percent used pesticide sprays daily and 26 percent used pesticide lotions a median of 20 times per month. The most commonly used compound was DEET, used by half of all personal almost daily. Permethrin was used by fewer personnel but was on average, used daily.

The Pesticide Information Project of Cooperative Extension Offices of Cornell University states that "Everglades National Park employees having extensive DEET exposure were more likely to have insomnia, mood disturbances and impaired cognitive function than were lesser exposed co-workers". Additionally, the Environmental Protection Agency classified permethrin as "Likely to be Carcinogenic to Humans" by the oral route. This classification was based on two reproducible benign tumor types (lung and liver) in the mouse, equivocal evidence of carcinogenicity in Long- Evans rats, and supporting structural activity relationship information.

Permethrin also has been shown to kill 1 in 10 cats exposed to permethrin with 90 percent of them displaying symptoms of twitching and convulsions. Furthermore, a study by the Predictive Toxicology Research Group in Inda found significant functional impairment of the blood-brain barrier following pesticide exposure during development in rats, even after one exposure.

Depleted Uranium

Depleted uranium, used in tank kinetic energy penetrator and autocannon rounds on a large scale in the Gulf War, has been recognized as a neurotoxin. Uranium is a heavy metal and chemical toxicant with nephrotoxic (kidney damaging), teratogenic (birth defect causing), and carcinogenic properties and is usually associated with a variety of illnesses. In a study of U.K. troops serving in the gulf, the risk of malformation among pregnancies reported by men was 50 percent higher in GWV, compared to non-GWVs.

Depleted uranium has been shown to induce cancer development and genetic mutations, autoimmune diseases and the core functionality of T cells, which play a central role in cell-mediated immunity. (See image above for the effects of Depleted Uranium on Iraqis and GWV children).

Chemical Weapons

Many of the symptoms of GWS are similar to the symptoms of organophosphate, mustard gas, and nerve gas poisoning. GWV were exposed to a number of sources including nerve gas and pesticides. Over 125,000 U.S. troops were exposed to nerve gas and mustard gas when an Iraqi depot in Khamisiyah, Iraq was bombed in 1991.

Additionally there is speculation that residual chemical agents from the Iran-Iraq war caused environmental contamination and chronic exposure to the troops, consistent with the increased observation of birth defects amongst the Iraqis during the period of the Gulf War.

Nerve Gas Protection

Pyridostigmine bromide (PB), an acetylcholinesterase inhibitor intended to protect against nerve agents was used extensively by GWV. According to the National Academy of Sciences, excess illness in Persian Gulf War veterans (GWV) can be explained in part by exposure of GWV to organophosphate and carbamate acetylcholinesterase inhibitors (AChEis), including pyridostigmine bromide (PB), pesticides, and nerve agents. Evidence germane to the relation of AChEis to illness in GWV was assessed. Many epidemiological studies reported a link between AChEi exposure and chronic symptoms in GWV.

It has been suggested that intake of PB by GWV may induce a condition termed bromism, a condition induced from the excessive intake of bromide, with neurological, psychiatric, dermatological, and possibly endocrine effects. Psychiatric symptoms may include, in the earlier stages, disinhibition, self-neglect, fatigue, sluggishness, impairment of memory and concentration, irritability or emotional instability, and depression.

Symptoms of more advanced disease may include confusion but occasionally schizophrenic-like behavior or hallucinations in clear consciousness. Behavior can become violent, especially at night or under the influence of drugs or alcohol and there may be severe auditory and visual hallucinations.

Anthrax Vaccines

During Operation Desert Storm, 41 percent of U.S. combat soldiers were vaccinated against anthrax. This was a source of serious side effects relating to GWS, as well as local skin reactions, some lasting for weeks or months. Remarkably, while approved by the FDA, it never went through any large scale clinical trials, unlike almost all other vaccines in the United States. Even after the war, troops that had never been deployed overseas developed GWS symptoms after receiving the vaccine. The Pentagon additionally failed to report 20,000 cases where soldiers were hospitalized after receiving the vaccine.

A U.S. Federal Judge ruled that there was good cause to believe it was harmful, and ordered the Pentagon to stop administering it in October of 2004. The ban was lifted in February 2008 after the FDA re-examined and approved the drug again. The vaccine is the only substance suspected in GWS to which forced exposure has been banned.

Homeless and Incarcerated Veterans

According to the National Coalition for Homeless Veterans, as of 2001, 23 percent of the homeless populations in America are veterans, accounting for between 529,000 and 840,000 of the total homeless population. 33 percent of these were stationed in a war zone, 89 percent received a dishonorable discharge and 75 percent experience alcohol, drug or mental health problems. For comparison, as of July 2008, there were 147,000 troops deployed in Iraq.

A 2000 report from the Bureau of Justice Statistics indicated another 225,000 veterans were held in Nation's prisons or jails in 1998. 60 percent of incarcerated veterans had served in the Army. 35 percent of veterans in state prison were convicted of a violent crime, compared to 20 percent of non-veterans and surprisingly, the average sentence of veterans was 50 months longer than the average of non-veterans.

Summary

Gulf War Syndrome profiles typically include some combination of chronic headaches, cognitive difficulties, widespread pain, chronic fatigue syndrome, chronic diarrhea, skin rashes, respiratory problems, increased birth defects, sleep disorders, memory problems, blurred vision and a variety of other symptoms. To date there is no identified treatment for Gulf War Syndrome that affects a significant number of veterans 17 years after the war.

The Veteran's Administration has been slow to even acknowledge the problem, less alone, provide treatment for these veterans. Many have lost their families, are unable to hold a job or have even been incarcerated as an indirect result of illnesses caused during their tour in the Gulf War. It's time that the U.S. Government to take responsibility for exposing unsuspecting soldiers to a toxic soup that will kill Gulf War veterans for years to come.

Today is International Fibromyalgia Awareness Day

Fibromyalgia is a Presumptive Condition for Gulf War Veterans

Help Make Fibromyalgia Visible!

Join the “Make Fibromyalgia Visible” movement and help bring hope to everyone with fibromyalgia.

Please take time today to make a difference by taking one of these simple steps.

SEND the FM Aware Magazine link to friends with fibromyalgia to help educate them about fibromyalgia.

TELL the people you meet today, May 12th, that it is Fibromyalgia Awareness Day.

LEARN about the many symptoms of fibromyalgia by reading this short, to the point article.

REACH OUT to a loved one who may be affected by the symptoms of his or her spouse’s or partner’s fibromyalgia, as described in this powerful article

SUPPORT and honor a loved one by sponsoring a "Lights of Hope" candle.

ADD the “Make Fibromyalgia Visible” logo to your e-mail signature. It’s fast and free, and lets all your e-mail recipients know that you care.  Click here to download or copy this FREE logo.

JOIN the National Fibromyalgia Association (NFA) – there’s strength in numbers.

BECOME a fan of the National Fibromyalgia Association on Facebook and keep up-to-date on all the latest fibromyalgia news and information. Click here to link to the NFA Facebook page.

PLEDGE TO CARE and encourage others to join the National Fibromyalgia Association in its national advocacy efforts on fibromyalgia. The program consists of three pledges: the NFA’s pledge to the fibromyalgia community, the family’s and friends’ pledge to someone special in their lives who suffers from fibromyalgia, and the healthcare providers’ pledge to the patient.  Click here to complete the pledge.  Your name is added to a virtual “We Care” pledge wall – a testimony to the far-reaching effects of Fibromyalgia.

GATHER WITH FRIENDS WHO ALSO HAVE FIBROMYALGIA and share your mutual support, information you have learned about fibromyalgia, and tips and tricks for dealing with the variety of symptoms of fibromyalgia.

Tuesday, May 11, 2010

The Wide Spectrum of Fibromyalgia Symptoms, a Presumptive Condition for Gulf War veterans

Written by Groshan Fabiola

(GrupoCompostela Health University) - Fibromyalgia is a complex neurological disorder with a pronounced chronic character. Although the most common symptoms generated by fibromyalgia are generalized pain and fatigue, the disorder can cause many other manifestations. Most people with the disorder have a wide diversity of physical symptoms that evolve latently, rarely becoming visible.

Due to the fact that most fibromyalgia symptoms can't be detected by medical examinations, some people consider the disorder to be self-induced.   However, the truth is that fibromyalgia is a serious condition and its symptoms are real.

Most people with fibromyalgia complain about ongoing pain felt throughout the entire body. This primary symptom generated by the disorder can vary in intensity from a person to another and it is usually associated with a generalized state of fatigue and body weakness. Fibromyalgia pain is felt deep within the muscles, bones and joints and it can sometimes become very intense, taking over the entire body.

Most people affected by fibromyalgia also experience muscular stiffness and poor mobility of the joints. Although medical examinations can't reveal the presence of physical abnormalities in people with fibromyalgia, most physical symptoms are very similar to those generated by rheumatoid arthritis or osteoporosis.

Apart from these common symptoms of fibromyalgia, people with the disorder may also experience sleep disturbances, gastrointestinal problems or urinary problems. People with fibromyalgia often suffer from insomnia or sleep apnea. Even when they get enough sleep, people affected by fibromyalgia may still have a pronounced feeling of fatigue. Many people with fibromyalgia also suffer from paresthesia, experiencing sensations of numbness and tingling in the muscles.

Although the specific causes of fibr9myalgia Fibromyalgia Symptomsremain unknown, it is believed that the disorder occurs on the premises of increased nervous excitability. Medical scientists believe that most of the symptoms generated by fibromyalgia are the result of neurological dysfunctions that determine the nervous system to perceive external stimuli at a higher intensity than normal.

This pertinent theory can easily explain some fibromyalgia symptoms such as ongoing pain, sensations of tingling, numbness, increased sensitivity to light and increased sensitivity to temperature. This theory can also explain why the symptoms of fibromyalgia can't be effectively revealed by medical examinations. Apart from a wide range of physical symptoms, fibromyalgia also generates psychological manifestations such as depression, anxiety and sudden changes in mood, suggesting the multifaceted nature of the disorder.

Relationship Issues Accompany Fibromyalgia, a Presumptive Condition for Gulf War veterans

Written by Rick Nauert PhD Senior News Editor, PsychCentral 
Reviewed by John M. Grohol, Psy.D.

Relationship Issues Accompany Fibromyalgia (PsychCentral.com) - Fibromyalgia is a condition characterized by a chronic feeling of discomfort or pain in muscles throughout the body.

The syndrome affects 5.8 million Americans and does not have a known cause.

A new study investigates how the effects of the syndrome extend beyond physical maladies stressing emotions and relationships.

Researchers from the University of Missouri specifically examined how the diagnosis of fibromyalgia can affect marriages. Initial findings reveal that diagnosed spouses have considerably higher levels of depressive symptoms and pain and report more marital instability and anger than their spouses.

For both spouses, the symptoms can trigger increased emotional withdrawal and mental strain.

“Preliminary research suggests that fibromyalgia is very hard on both spouses because their lives are changed dramatically,” said Christine Proulx, assistant professor of human development and family studies in the College of Human Environmental Sciences.

“There appears to be a strong link between fibromyalgia and feelings of depression and fatigue, which can be debilitating for those diagnosed and their marriages. The mental strain felt by both spouses can negatively affect marital quality.”

Proulx found that individuals with fibromyalgia were almost three times more depressed than their spouses.

The diagnosed spouses reported higher levels of marital instability and more marital anger, indicating they were more likely to consider divorce than their spouses. The healthy spouses reported that it was difficult to watch their spouses experience pain.

“Both spouses are put in difficult positions when one partner is diagnosed with fibromyalgia,” Proulx said.

“Spouses must balance the presence of the disease, which can produce hostility or withdrawn behavior in the marriage, with the difficulty of being sick or being supportive to the spouse who is sick. These factors can create a cycle that can be very negative if it can’t be broken.”

In the study, Proulx is studying the interactions of married couples that include one spouse who has been diagnosed with fibromyalgia or chronic widespread pain.

The spouses record diary entries about their marital interactions and personal feelings. Proulx is examining the associations between marital quality, daily interactions, social support and the spouses’ personal wellbeing.

Fibromyalgia is controversial because there is no consensus on the cause of the chronic pain symptoms it causes, Proulx said.

It has no cure, so many of the couples who participated in the study reported that they were constantly trying different treatments to manage the symptoms.

Source: University of Missouri

Sunday, May 9, 2010

Looking for Gulf War Veterans with GULF WAR ILLNESS for study

(Portland, Ore. – Willamette Week) - An Oregon research is looking for veterans who developed unexplained illness following deployment to the Persian Gulf War to help with a study.

To participate in the study, you would need to be a veteran who was deployed in the Persian Gulf War (1991-1992) [1990-91?], and developed unexplained illness following that experience. The illness is typically characterized by gastrointestinal symptoms, fatigue, skin rashes, joint pain, and neurological symptoms. You would need to complete a questionnaire about your experience, and provide a stool (fecal) sample for analysis. There is no charge for the study. It is conducted by mail, so no travel is required.

If you know a veteran who may be interested, you are welcome to pass this information along.

We are investigating the possibility that these symptoms in veterans may be due to an undiagnosed infection with Blastocystis, a protozoan which is found in contaminated food and water. We've worked with researchers in the Middle East, Europe, and Oregon to conduct similar studies on civilians with unexplained illness. This will be our first study focused on veterans.

For more information, please contact Ken Boorom at 815-572-9701 or director@bhomcenter.org. The Blastocystis Research Foundation is a non-profit 501(c)(3) organization that works with patients and researchers and patients to address this infection. A list of our prior publications is available on the National Institutes of Health's "PUBMED" database, by following this link:

http://www.ncbi.nlm.nih.gov/pubmed?term=%28Boorom+K[Author]%29

Saturday, May 8, 2010

People With Fibromyalgia Prone to Falls

Chronic pain, fatigue condition is a presumptive condition for Gulf War veterans

Written by Charlene Laino and reviewed by Laura J. Martin, MD

(Baltimore - WebMD Health News) -- People with fibromyalgia may be prone to falls due to balance problems, a small study suggests.

The findings suggest that people with fibromyalgia can benefit from exercises to improve balance, says Kim Dupree Jones, PhD, of Oregon Health & Science University in Portland.

"Balance is what we can try to manipulate to reduce falls, just like we try to manipulate cholesterol levels to reduce heart disease," she tells WebMD.

Kuwait says finds Gulf War mass grave of Iraq troops

(Reuters) - Kuwaiti authorities have found a mass grave of 55 Iraqi soldiers killed in the 1991 Gulf War, the state news agency KUNA said Thursday

Iraqi military badges and death certificates issued by the U.S.-led coalition forces that fought the war with Iraq were found in the grave, an Interior Ministry spokesman told the agency.

The remains will be handed to Iraq through the International Committee of the Red Cross.

The search for the mass grave in northern Kuwait started based on tips from the ICRC and a Kuwaiti committee that has been trying to determine the fate of some 600 Kuwaitis and others who disappeared in the Gulf crisis that was sparked by Saddam Hussein's invasion of Kuwait, he said.

More than 360 Kuwaitis and others who lived in Kuwait when Iraq invaded it are still unaccounted for. Remains of the rest were found in mass graves in Iraq.

Friday, May 7, 2010

MS Foundation: Biomarkers Test for MS Nine Years Before Symptoms Appear

(MSfocus.org) - A small study analyzing  the blood of healthy people who developed MS, along with  the blood of those who did not, has uncovered “blood signatures” that may lead to a diagnosis of MS before symptoms appear, and consequently earlier and more effective intervention.

"We are not yet able to treat people with MS to prevent the onset of the disease but knowledge is power," says Anat Achiron, a professor of Tel Aviv University's Sackler Faculty of Medicine and vice-dean of research at Sheba Medical Center. "Every time we meet a new patient exhibiting symptoms of MS, we must ask ourselves how long this has been going on. We can diagnose MS by brain MRI, but we've never been able to know how 'fresh' the disease is."

If doctors can predict the onset of MS early enough, intervention therapies using immunomodulatory drugs or beta-interferon drugs that stave off MS symptoms might be used.

Examining blood samples of twenty19-year-old Israelis who were inducted into the army as healthy soldiers, and the nine of them who later developed MS,  Achiron and her team at Sheba were able to use a "high throughput analysis" using more than 12,000 gene transcripts expressions. The screening compared similarities and differences in the blood of those who developed MS and those who did not, eventually establishing biological markers.

"Those who will develop MS will show a different blood signature from those who will not," says Achiron. "When we compared the gene expression signatures, we saw a similar pattern of the same working biological processes."

These early genetic markers may now be used to test for MS up to nine years before healthy young adults start developing symptoms. And because MS is thought to have a genetic component and a tendency to be found in siblings, Achiron says the biomarkers can be used as a tool for brothers and sisters of people with MS. The goal is to learn more about the genetics of MS through this new discovery, with the hope that early intervention therapies may be more effective, and help advance medicine toward a cure, according to Achiron.

Typically by the time a person notices symptoms, significant and irreversible nerve damage is already done.

Tuesday, May 4, 2010

Public Comment Period for New VA Gulf War Illness Rules Still Open, Task Force Report comments now closed

Written by Anthony Hardie, 91outcomes Publisher/Editor

(91outcomes.com) – While the public comment period related to the first report of the VA’s internal Task Force on Gulf War Veterans’ Illnesses is now closed, public comments related to the VA’s proposed rules for Gulf War illness and nine endemic infectious diseases may still be submitted online.

“The extensive body of scientific research now available consistently indicates that ’Gulf War illness’ is real, that it is the result of neurotoxic exposures during Gulf War deployment, and that few veterans have recovered or substantially improved with time,” said VA report released in November 2008 by a government panel of scientists and veterans.

“The excess of unexplained medical symptoms reported by deployed Gulf War veterans cannot be reliably ascribed to any known psychiatric disorder,” said the Institute of Medicine in its comprehensive scientific review last month, which also said that 250,000 veterans of the 1991 Gulf War suffer from chronic multisymptom illness.  This debilitating health condition affecting one third of Gulf War veterans is more commonly called Gulf War Illness or Gulf War Syndrome.

The text of the VA’s proposed rules for Gulf War illnesses, and a tool for easily submitting comments online are available online.  The public comment period related to the VA’s proposed Gulf War illnesses rules remains open until Monday, May 17, 2010.

Public comments submitted online related to this Task Force Report, now closed for public comment, include the following. 

The Task Force chair, VA Chief of Staff John Gingrich, has pledged to carefully review all submitted comments.

Task Force Report comments by members of the U.S. Department of Veterans Affairs Research Advisory Committee on Gulf War Veterans’ Illnesses:

  1. Joint Submission by:  James H. Binns, Jr., Phoenix, AZ (Chair)
    James P. O’Callaghan, PhD, Morgantown, WV
    Kimberly Sullivan, PhD, Boston, MA
    Roberta F. White, PhD, Boston, MA
  2. Beatrice A. Golomb, M.D., PhD
  3. Anthony D. Hardie*, Gulf War veteran
  4. Lea Steele*, PhD, Past Scientific Director

*Also a committee member of the U.S. Department of Defense’s Gulf War Illness Research Program, part of the Congressionally Directed Medical Research Program

Comments submitted by Veterans Service Organizations:

  1. National Gulf War Resource Center (www.ngwrc.org):  James A. Bunker
  2. Veterans for Common Sense (www.veteransforcommonsense.org):  Joint Submission by

    Dan Fahey, President, VCS, Gulf War veteran
    Charles Sheehan-Miles, Director, VCS, Gulf War veteran
    Michael Zacchea, Director, VCS, Iraq War veteran
    Paul Sullivan, Executive Director, VCS, Gulf War veteran
    Thomas Bandzul, Associate Counsel, VCS, Vietnam War veteran
    Chris Kornkven*, Past President, NGWRC, Gulf War veteran
    Michael Blecker, Executive Director, Swords to Plowshares, Vietnam War veteran
    Amy Fairweather, Director of Policy, Swords to Plowshares

    *Also a committee member of the U.S. Department of Defense’s Gulf War Illness Research Program, part of the Congressionally Directed Medical Research Program

Other formal public comments submitted online:

VA also allowed for public comments on the Task Force Report using a new online tool. 

The Task Force Chair has pledged to also fully consider all of these comments, which were divided into sections as follows.

Forums

Monday, May 3, 2010

Gulf War Veteran’s Death Provides Powerful Reminder of the Urgency of Military Medical Research

Written by Anthony Hardie, 91outcomes.com Publisher/Editor

(91outcomes.com) At the end of July 2007, I had the privilege of meeting and testifying before Congress in Washington, D.C. on behalf of our fellow Gulf War veterans alongside Retired Brigadier General Tom “General Mik” Mikolajcik. 

I learned this week that General Mik’s exhausted body had finally succumbed to the nearly always fatal ALS, a horrifying, paralyzing, degenerative neurological disease that leaves the mind intact, named for taking the life of baseball great Lou Gehrig just prior to the U.S. entry into World War II nearly seven decades earlier. 

Though the “expected” rate of ALS would have suggested at most just a handful of cases of ALS among Gulf War veterans age 60 or older, ALS has been diagnosed in that number of veterans of the 1991 Gulf War many times over.  Mainly in their 20s, 30s, and 40s, these Gulf War veterans’ disease have led involved scientific researchers to call it an outbreak while also potentially providing important clues about the nature of this and the other diseases affecting us Gulf War veterans at highly disproportionate rates.

General Mik’s home state of South Carolina carried news coverage at the time that captured his words from that hot summer D.C. morning:  

"Only by the grace of God am I here to speak with you today," he told the committee that day, "and I have vowed to keep speaking until I no longer can."

"It's been nearly 70 years since Lou Gehrig made his farewell speech, and we have basically nothing," he said. "One questionable drug in 70 years? How many thousands of private farewell speeches must take place before we realize we're not doing everything we can?"

His wife then emptied a briefcase of antique children's blocks on the hearing table, blocks that children would play with during Gehrig's time.

"These blocks represent ongoing ALS research," Mikolajcik said. "All are separate, none are connected and there is no communication going on between them."

Mikolajcik's voice and mind were as sharp as his body was limp.

Sitting next to General Mik on the three-person panel, I testified next.  Like him, and Maj. Denise Nichols, the other Gulf War veteran next to me, we had allowed our private health lives to become public in the urgent hopes of educating and aiding others.  Doing my best to also represent our fellow veterans at the hearing on another of the health issues unexpectedly affecting large numbers of us who served in the 1991 Gulf War -- the chronic multisymptom illness more usually termed Gulf War Illness or Gulf War Syndrome that is today known, according to the Institute of Medicine, to afflict 250,000 of the War’s 696,842 veterans -- I told the Congressional committee:

“For Members of the Committee who may not be familiar, Gulf War troops were exposed to a host of toxic exposures experienced, often in combination, including: multiple low-level exposures to chemical warfare agents, including from bombed munitions factories and detonated munitions bunkers; experimental drugs mandated without informed consent like Pyridostigmine Bromide (PB) pills intended to help survive nerve agent exposure; inhalation of the incredibly high levels of micro-fine particulate matter from the Kuwaiti oil well fire plumes; experimental vaccines like anthrax, botulinum, and others; inhaled and ingested depleted uranium (DU) particulate matter; smoke from the daily burning of trash and feces; multiple pesticides; and petroleum products and byproducts.

“For some of us who developed lasting health effects from this veritable toxic soup of hazardous exposures, it came while still in the Gulf.  For others, it did not come until sometime after returning home. 

“Hearing this list of exposures, most people would find it of no surprise that so many thousands of Gulf war veterans became ill, or that so many remain ill and injured today.  And it should be no surprise that so many have developed diagnosable, serious conditions like ALS, MS, and others. 

“What is stunning is that sixteen years later, there are still few tangible results that might improve the health of those who became ill and remain ill.  And we still have little information of any value to provide to Gulf War veterans or their health care providers that might help to improve Gulf War veterans’ health.

“Years were squandered disputing whether Gulf war veterans were really ill, studying stress, reporting that what was wrong with Gulf War veterans was the same as after every war.  An incredible amount of effort was put into disproving the claims of countless veterans testifying before Congress about chemical and other exposures.  Some of that negative effort appears to continue even today.

“It is stunning that after nearly two decades, we still have little information to provide to Gulf War veterans who remain ill from their service.”

It’s true that since that day in 2007, we have seen a few successes towards improving the health and lives of veterans suffering from ALS, Gulf War Illness, and other health conditions affecting Gulf War veterans.  However, given the sharply limited nature and number of useful outcomes to date, this is to reemphasize what I told the Members of Congress that day:

“The five-point statement of goals that came from Gulf War veterans more than a decade ago still holds true today: 

  1. Gulf War veterans deserved then and deserve now an assurance that an exhaustive investigation has been fulfilled to identify all possible Gulf War exposures;
  2. That appropriate scientific research is promptly completed to connect known or potential Gulf War exposures with health outcomes;
  3. That medical treatment is based on that scientific research;
  4. That compensation is provided to those veterans left disabled by their military service if the health conditions cannot be reversed; and
  5. That every effort is made to ensure that never again can what happened to Gulf War veterans be allowed to happen.”

For the Gulf War veterans who have died from or are currently suffering from ALS, MS, brain, testicular and other cancers, and for the more than one-third of us who today still suffer the debilitating effects of Gulf War associated chronic multisymptom illness, we must continue our nation’s efforts on behalf of our fellow veterans until effective treatments – and preventive measures – can be found.

ALS is the most deadly disease of them all, and most other diseases known to science pale in comparison to its dreadful effects.  Yet because it is so rare, it still has only minimal funding aimed at finding life-extending treatments. 

But, the current VA leadership, with its internal Task Force on Gulf War Veterans Illnesses and public report still open for comment through May 3rd, is clearly leading major change that again has hope on the horizon for so many of us.   And ongoing Congressional action on military health research funding is also renewing hope.

But what is urgently needed is an urgently pursued renewal of a comprehensive and coordinated federal health research program related to the causes and treatments of the array of disabling diseases that affect Gulf War veterans, including for ALS, MS, and for Gulf War Illness.  At the size and scope called for by the IOM that would be comparable to a Manhattan Project for today, this program would undoubtedly provide many long-awaited answers. 

Such changes are of course too late for General Mik and for so many of our fellow veterans of the 1991 Gulf War who have gone on before us from diseases directly resulting from Gulf War service.  Hopefully, these changes won’t be too late to provide tangible and potentially cost-saving improvements in the health and lives of those of us still living.  And, pursuing these military research and treatment avenues will help ensure that countless thousands of those who will come after us may well be able to avoid the health outcomes experienced by hundreds of thousands of us Gulf War veterans.

In joyful tribute to his life, in solemn honor of his painful death, in recognition of his work , and in eternal remembrance of his wise, firm, heartfelt words told to Congress that day and both publicly and privately to me and to so many others before and since, General Mik’s extended obituary from his hometown Charleston Post and Courier is shared below.

And for those of us veterans of the 1991 Gulf War still struggling with the enduring health effects of that war, short as wars go but long in impact on those who fought it, I think General Mik would have appreciated sharing the words of the man for whom the disease that would take his life was named, words that have meaning for all of us:

“So, I close in saying that I might have been given a bad break, but I've got an awful lot to live for.”    -Lou Gehrig, 1941

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Retired brigadier general used his battle with ALS to focus attention on disease

Written by Glenn Smith, The Post and Courier, with Diane Knich contributing.

photo

Retired Air Force Brig. Gen. Thomas Mikolajcik campaigned to raise awareness about amyotrophic lateral sclerosis, better known as Lou Gehrig's disease.

photo

 

Retired Air Force Brig. Gen. Thomas Mikolajcik of Mount Pleasant went to Capitol Hill in 2006 to seek support for ALS research and draw attention to a higher incidence of the fatal disease among military veterans.

(Charleston, S.C.) - Retired Brig. Gen. Thomas Mikolajcik, a career military man who waged his greatest battle fighting to help victims of Lou Gehrig's disease, died Saturday [April 17, 2010].

He was 63.

Mikolajcik, former commander of the Charleston Air Force Base, was diagnosed in 2003 with amyotrophic lateral sclerosis, better known as ALS, or Lou Gehrig's disease. The disease progressively kills nerve cells, robbing its victims of muscle control until they become paralyzed and die, usually within two to five years. There is no cure.

Mikolajcik knew there was no chance he would beat the disease. He fought to improve the odds for future victims.

Carmen, his wife of 40 years, said her husband never asked, "Why me?" He told her early on, "I could cry or I could do something to help others," she said. "He chose to do that."

Mikolajcik was "always a very persistent man, very ethical, very principled," she said. "Once he got on a cause, it was usually easier to say 'yes' to him than to say 'no.' "

The Mount Pleasant resident was instrumental in forming the first ALS Association chapter in South Carolina in 2005. He also pushed for the creation of a local clinic that opened in July 2006 to treat those stricken with the neurological disorder. He helped lead an ALS support group, promoted the annual fundraising walk for the ALS chapter and made public appearances to focus attention on the disease.

The brigadier general visited Washington three times to push for ALS research and he testified before a congressional committee in July 2007. He fought to spur government action on the link between military service and ALS. Studies have found that veterans are much more likely to contract the disease than those who have never served in the military. No one is sure why.

Mikolajcik's efforts helped win additional defense funding for ALS research, bolstered Pentagon interest in the disease and paved the way for legislation establishing an ALS database to warehouse information on the disease for scientists and patients. President George W. Bush signed the ALS Registry Act into law in October.

Mikolajcik's work won him much praise and recognition. Last year, the ALS Association South Carolina Chapter honored Mikolajcik and his family for their spirit, work and courage, describing them as role models for people living with the disease.

Rebecca Jordan, the chapter's executive director, said Mikolajcik's work helped thousands of veterans and other people with ALS. "Just being in his presence made people feel better," she said.

The last time she saw him was in February. He was completely paralyzed and was having difficulty breathing, but he told her he wished he could do more.

Mikolajcik spoke candidly about the toll the disease took on his body, but he wasn't interested in sympathy or pity. He saw himself as a strong-willed spokesman who could shed light on a disease that receives little national attention.

"God has given me a cross to bear, but he also allows me to still have the energy, the faculties and the voice to maybe make a difference, whether it be in helping other people or in raising awareness," Mikolajcik said in 2006.

The grandson of Polish immigrants, he made service to country and community a hallmark theme in his life. At his 60th birthday party in August 2006, 250 people from around the globe gathered in North Charleston to pay tribute to the aging warrior. Gov. Mark Sanford lauded Mikolajcik for leading "a true life of service before self." Brig. Gen. Susan Desjardins called him "an absolute hero."

Col. Martha Meeker, Joint Base Charleston commander, said Mikolajcik's favorite quote started with the phrase "Be Strong and Courageous," and he was both. "Throughout his life in the Air Force and in the community he was a leader who others looked up to, and the strength and courage he showed at the end of his life deeply touched everyone around him."

During a 27-year career in the Air Force, Mikolajcik commanded a C-130 Wing in Rhein-Main, Germany, during Desert Shield/Desert Storm, ran all air operations during the Somalia humanitarian campaign, and served as Air Force director of transportation at the Pentagon. He ran the Charleston Air Force Base from 1991 to 1994. He retired from the Air Force in 1996.

Mikolajcik remained active as a military advisor to the Charleston Metro Chamber of Commerce and as a mentor for military commanders in the area. His contributions proved a key factor in local and state efforts to minimize base closures and job losses during the Pentagon's Base Realignment and Closure process in 2005.

Last year, the Charleston Air Force Base honored its former wing commander by breaking ground on the Brigadier General Thomas R. Mikolajcik Child Development Center, a $9.8 million facility that will accommodate 305 children.

Meeker said, "every time one of our airmen takes their child to the General Mikolajcik day care center or a sailor arrives at the General Mikolajcik engineering laboratory, he will be remembered. And every time a veteran suffering from ALS receives VA care, he will be thanked."

Mikolajcik also was a founding member of the Mount Pleasant Open Space Foundation and a senior advisor to the National Defense Transportation Association's local chapter.