Monday, August 30, 2010

All About MS – a reportedly common diagnosis among some Gulf War veterans

Multiple sclerosis

IMAGE:  Multiple sclerosis is a central nervous system disorder marked by decreased nerve function with initial inflammation of the protective myelin nerve covering and eventual scarring. Symptoms and severity of symptoms vary widely and may progress into episodes of crisis alternating with episodes of remission.

( - MS; Demyelinating disease


Symptoms vary, because the location and severity of each attack can be different. Episodes can last for days, weeks, or months. These episodes alternate with periods of reduced or no symptoms (remissions).

Fever, hot baths, sun exposure, and stress can trigger or worsen attacks.

It is common for the disease to return (relapse). However, the disease may continue to get worse without periods of remission.

Because nerves in any part of the brain or spinal cord may be damaged, patients with multiple sclerosis can have symptoms in many parts of the body.

Muscle symptoms:

  • Loss of balance
  • Muscle spasms
  • Numbness or abnormal sensation in any area
  • Problems moving arms or legs
  • Problems walking
  • Problems with coordination and making small movements
  • Tremor in one or more arms or legs
  • Weakness in one or more arms or legs

Bowel and bladder symptoms:

  • Constipation and stool leakage
  • Difficulty beginning to urinate
  • Frequent need to urinate
  • Strong urge to urinate
  • Urine leakage (incontinence)

Eye symptoms:

  • Double vision
  • Eye discomfort
  • Uncontrollable rapid eye movements
  • Vision loss (usually affects one eye at a time)

Numbness, tingling, or pain

  • Facial pain
  • Painful muscle spasms
  • Tingling, crawling, or burning feeling in the arms and legs

Other brain and nerve symptoms:

  • Decreased attention span, poor judgment, and memory loss
  • Difficulty reasoning and solving problems
  • Depression or feelings of sadness
  • Dizziness and balance problems
  • Hearing loss

Sexual symptoms:

  • Problems with erections
  • Problems with vaginal lubrication

Speech and swallowing symptoms:

  • Slurred or difficult-to-understand speech
  • Trouble chewing and swallowing

Fatigue is a common and bothersome symptoms as MS progresses. It is often worse in the late afternoon.

Signs and tests

Symptoms of MS may mimic those of many other nervous system disorders. The disease is diagnosed by ruling out other conditions.

People who have a form of MS called relapsing-remitting may have a history of at least two attacks, separated by a period of reduced or no symptoms.


Myelin and nerve structure

Myelin and nerve structure

IMAGE:  Myelin is the layer that forms around nerves.

The health care provider may suspect MS if there are decreases in the function of two different parts of the central nervous system (such as abnormal reflexes) at two different times.

A neurological exam may show reduced nerve function in one area of the body, or spread over many parts of the body. This may include:

  • Abnormal nerve reflexes
  • Decreased ability to move a part of the body
  • Decreased or abnormal sensation
  • Other loss of nervous system functions

An eye examination may show:

  • Abnormal pupil responses
  • Changes in the visual fields or eye movements
  • Decreased visual acuity
  • Problems with the inside parts of the eye
  • Rapid eye movements triggered when the eye moves

Tests to diagnose multiple sclerosis include:

  • Lumbar puncture (spinal tap) for cerebrospinal fluid tests, including CSF oligoclonal banding
  • MRI scan of the brain and MRI scan of the spine are important to help diagnose and follow MS
  • Nerve function study (evoked potential test)

Saturday, August 28, 2010

DU Bills in State Legislatures

2007 Bills and Resolutions on Depleted Uranium

More than 50 bills including the term "depleted uranium" were introduced in the States in 2007.  Most related to informing and screening military members and veterans for exposure to depleted uranium in combat. 

Much of the interest by the States has been generated by ongoing media coverage of the failings of the federal government with regards to emerging veterans health issues over the last four years, including environmental agents and exposures like Agent Orange and Gulf War Illness/Syndrome.

See the National Council on State Legislatures full 2007 report.  Those bills passed into law note the location as chaptered, resolutions as adopted.:

Thursday, August 26, 2010

American Legion Provides Congressional Testimony on GWI


JULY 27, 2010

Chairman Mitchell and Members of the Subcommittee, The American Legion would like to thank you for the opportunity to testify today and strongly appreciates the Subcommittee's commitment to addressing this issue. In many ways, this generation of wartime veterans can identify with the veterans of previous generations exposed to other environmental hazards, such as radiation and Agent Orange. This kinship comes from the suffering, hardships, and challenges they faced in dealing with the very government that placed them in harm's way.

As service members, veterans are trained to fight and defeat the enemy. For those Gulf War veterans with an array of medical conditions not easily diagnosed, they were not prepared for the battle ahead with both the Department of Defense and the newly-created Department of Veterans Affairs. Fortunately, these veterans had an ally -- The American Legion.

Today, The American Legion would like to address the cultural perception of Gulf War Illness: the research; the care (both medical and benefits wide); and finally the education and outreach to Gulf War veterans.

For Most: A Military Success Story

The Southwest Asian War was historic in many aspects. Each military operation from start to finish truly demonstrated the greatest military force the world had ever seen. Over a six month period, from August to February, the military buildup was textbook and unprecedented. The airpower unleashed in January of 1991 softened the Iraqi military and inflicted tremendous damage prior to what was predicted to be a major ground action. The "100-hour War" had no equal in the United States military history. Military losses were minimal. Clearly, noncombat injuries far outnumber the combat wounded on the battlefield. The anticipated threat of chemical or biological warfare never materialized. The multi-nation Coalition Forces, working in harmony, successfully freed Kuwait and confined Saddam Hussein within the Iraqi borders. Service members returned home from Operation Desert Storm to warm welcomes and parades.

For Others: An Adventure

Back home, thousands of National Guard and Reserve personnel were being federalized for deployment to augment their active-duty counterparts. That meant refresher training on such activities as Nuclear, Biological and Chemical (NBC) Warfare Protection; Decontamination Activities; Combat First Aid; Prisoner of War processing and confinement; Geneva Convention; Weapons Qualification; and physical training. Going through the mobilization for deployment meant medical and dental checkups; wills; powers of attorneys; cleaning and packing equipment; inoculations; medications; and more training. As unit after unit were deemed combat-ready, they were deployed.

When service members began arriving in Saudi Arabia, they found themselves in unfamiliar surroundings. Most were still wearing their "Woodlands Green" camouflage fatigues in the desert surrounding. Daytime temperatures soared and nighttime temperatures dropped. Diets changed according to locations. Some still had access to hot meals prepared in field kitchens or makeshift dining halls, while others began their Meals Ready to Eat daily regimen. Once in Saudi Arabia, service members began taking their malaria pills until their issued allotment was depleted.

Training resumed with increased emphasis on NBC conditions. Efforts to break the boredom resulted in volleyball, basketball, baseball or football games while wearing the protective mask, protective suits, protective boots, and protective gloves. Hydration was emphasized at every turn. Then there were the "other" shots, as prescribed (botulism and anthrax) and the additional medication (Pyridostigmine Bromide - PB) with or without instructions.

Some units were deployed to the desert locations living in "tent-cities," while others remained in quarters, such as Kobar Towers - an underutilized community house project built by the Saudi Arabian government for their nomadic citizens. At Kobar Towers, underground parking garages were converted into assembly areas, stores, call centers and dining facilities.

For Others: A Long Nightmare

Before long the environment began to change. Pesticides were used by the individual service members to repel insects - mostly flies and fleas. At times, a commercial sprayer (contracted) dispensed pesticides via a "fog machine" as it drove around the compound. Personal hygiene was emphasized depending on the location. In the desert, some had access to field showers - gravity-fed setups next to tanker trucks. Latrines were "cleaned" daily with the body waste normally burned off by use of diesel fuel. Kerosene stoves were often used inside the tents for heat at night. Small diesel generations provided power for lighting the tents. Much larger generators provided power for kitchens, dining areas, and recreational areas. In addition, garbage was disposed of in "pile it and burn it" landfills - little to no quality control over these burning activities - most were civilian operated.

Then the oil well fires began. The density of the smoke varied based on location from extremely heavy (blocked out the sun) to light (a haze). Wind direction also played a major role. When it did rain, there were times that the rain drops left spots on clothing and skin as it penetrated the clouds.

Chemical detection equipment was strategically dispersed on vehicles and on the ground to give early warning of the presence of chemical agents. Unfortunately, they seem to go off frequently, very frequently -- almost all the time. In fact, some service members just remained in their NBC protective clothing (except the mask and gloves) between alarm activations. It was almost a "crying wolf" situation - service members did not consider them reliable. It was reported that some were even disabled because of the repeated "false alarms."

Next SCUD missiles were launched, which were normally greeted by two Patriot missiles launched to intercept them. Explosion were impressive and debris was visible as it dropped from the sky and could be heard when they fell to the ground. The psychological impact of not knowing whether the SCUD missile was carrying a chemical or biological warhead weighed heavy on many service members. Each time a siren sounded, protective NBC gear was donned and worn until the all clear was announced. Unfortunately, the very last SCUD launched reportedly did the most damage. It hit a barracks not far from Kobar Towers, killing some National Guard and Reserve personnel from Pennsylvania.

So Why Am I Sick?

Not long after the war, The American Legion Service Officers began getting complaints from returning Gulf War veterans about medical problems they encountered either while in country or upon return from Southwest Asia. The symptoms were wide-ranging, but fatigue, joint pain, skin rashes, memory loss, and mood swings appeared to be met with a common diagnosis - "it is all in your head" or "it is stress-related" by both Department of Defense (DoD) and Department of Veterans Affairs health care professional. Some ill service members were prescribed medications such as Prozac or other mood altering drugs. Some service members were even accused of malingering.

Some service members going to VA medical facilities were told to go back to the Military Treatment Facility, but since they were no longer on active duty they were told to go back to the VA or their private health care providers. Those who went to private doctors were told to go to the VA or Military Treatment Facility because their medical conditions were clearly service-connected.

None of the health care providers denied that the symptoms existed; they just didn't know what was causing them and treatment was pretty much non-existent. Some were diagnosed as the flu - for months. Others were given anti-fungal medications proven to be ineffective. Frustration began to set in. Repeated complaints seem to fall on deaf ears, except family members who were also beginning to become very angry with the lack of answers or medical treatments. Veterans were only seeking medical treatment from health care professionals in the military, Veterans Affairs, and the private sector - getting few answers to the question "Why am I sick?" and little to no treatment.

Building of a Data Base

Soon The American Legion began compiling a list of ill Gulf War veterans. As our unofficial list grew, acting VA Secretary Anthony Principi authorized VA to begin collecting name on an initial Gulf War Registry - not treatment, no compensation - just begin collecting names. Once The American Legion had collected over 100 names, former Representative Joe Kennedy (MA) agreed to listen to the complaints of ill Gulf War veterans and their families. As a member of the Veterans' Affairs Committee, he held the meeting in this very hearing room. What started out as a meeting, ended up being a hearing chaired by the late Representative "Sonny" Montgomery. Veteran after veteran told his or her story, in some cases, the spouse had to speak on a veteran's behalf because of illness prohibited the veteran from attending. It became increasingly clear a much larger number of veterans were ill compared to what VA and DoD were reporting to Congress.

When other congressional hearings began, both DoD and VA agreed that there was no evidence of anything that would be making these service members sick. However, when one of the Members of Congress, Representative Steve Buyer (IN), showed them the medications he was taking since his return from the Gulf War, the tone of Congress, DoD and VA began to slowly change. Congress became more aggressive, while DoD and VA became more defensive. From this pivotal moment, the issue of Gulf War Illness became a national issue of concern.

Looking for the Silver Bullet

At this point, everyone was looking for the "cause" not the "solution." That remains the situation today, still looking for the "diagnosis" rather than "successful treatments." Among the first suspects was a disease called Leishmaniasis (a parasitic disease) since a few service members had actually been diagnosed with it, but that was ruled out as "the cause." Then the issue of depleted uranium (DU) surfaced, but it too was determined not to be "the cause." Then the inoculations, to include anthrax, were suspected, but they were also determined to be "safe." The PB pill became a new theory, which has not been completely ruled out at this point. Some pointed to the oil well fires or the diesel exhaust or poorly ventilated tents, but none seems to be the right cause.

In the Senate, the list of chemicals provided to Iraq by many different companies, including US companies reveals the very real possibility of the presence of a toxic chemical environment. That coupled with the thousands and thousands of "false alarms" by our military chemical detection equipment.

About this time, the question of possible low-level chemical exposure began to receive more consideration. While DoD definitively claimed that there was no presents of chemical on the battlefield, there were actually reports of detection of Sarin on the battlefield (a Marine FOX vehicle and a Coalition Forces chemical detection team). Then reports of the demolition of a munitions storage complex at Khamisiyah, by US service members was validated via video footage taken by an ill service member. "Seeing is believing." However, even this "suspect" after years of analysis was determined not to be the cause of undiagnosed medical conditions.

Seeking Health Care

From 1990 until 1996, access to care in the VA health care delivery system was strictly limited to service-connected disabled veterans and economically disabled veterans. Access to care was very confusing and complex. However, since 1996 more than 8 million veterans have enrolled in the VA health care delivery system and nearly 6 million are "unique patients." Unfortunately, by this time many ill Gulf War veterans seemed to have lost faith in VA's health care delivery system. Their biggest complaint was the lack of urgency, sincerity and compassion in dealing with their medical conditions. Both VA and DoD had created registries, but by this time, all Gulf War veterans were being added to the registries whether the veteran was ill or not.

However, to find the exact number of ill Gulf War veterans receiving treatment for their diagnosed medical condition would be a major challenge and results were extremely disheartening. Many of the initial Gulf War veterans seeking health care from VA for their undiagnosed medical conditions just walked away. Some went to private health care providers. Some just tried to accept their fate and suffer their pain in silence. The trust in VA was lost. The confidence is minimal.

The stigma of being an ill Gulf War veteran is real. There did not seem to be a standard protocol in dealing with these veterans by the system. Even as legislation was passed addressing undiagnosed illness, public law did not successfully translate into proper care and treatment of ill Gulf War veterans. Veterans searched for health care professionals who believe they were sick - whether in the public or private sector. Regrettably, there is still no treatment prescribed for ill Gulf War veterans.

Once a doctor described Gulf War illness as "being shot with a bullet made of ice. The damage is done, but the evidence has melted away. The absence of evidence doesn't mean that the evidence is absent."

"Placing Care Before Process"

Members of The American Legion were asked by the former Secretary of Veterans Affairs, James Peake, to serve on the Advisory Committee on Gulf War Veterans. The Advisory Committee produced a report entitled: "Changing the Culture: Placing Care Before Process." This title represents the collected thought of that Advisory Committee - America has an obligation to the men and women of the Armed Forces that exceeds the existing bureaucratic paradigm.

The American Legion would highly recommend you and your colleagues review the recommendations made by this Advisory Committee to VA Secretary Shinseki.

Nearly every Gulf War veteran who addressed the Committee addressed their frustration and dissatisfaction with the way they were initially treated - or mistreated - within VA. Veterans who were not easily diagnosed were treated as liabilities and pushed aside. We even learned of biases within the health care profession that found undiagnosed illness as simply a desire for disability compensation. If the answer is not obvious, quit looking or send them to mental health. Nearly every Gulf War veteran who appeared before the Advisory Committee had pretty much given up on VA ever making a diagnosis or providing treatment.

Had the medical conditions existed prior to deployment, most of symptoms ill Gulf War veterans identified would have likely made them "unfit for duty" and would have cancelled their deployment orders to Southwest Asia. Clearly, they would have probably been released from the Reserves or Nation Guard for being "unfit for duty." That is why the ill Gulf War veterans find it is so unacceptable -- that the failure of two Federal health care delivery systems to have failed returning veterans with such disregard.

Gulf War Veterans Illness Task Force (GWVI-TF)

The Gulf War Veterans Illness Task Force (GWVI-TF) recently published a report of their findings after a comprehensive review of all VA programs and services that serve the Gulf War cohort of veterans. The task force focused its efforts on veterans who were deployed to the Operation Desert Shield or Operation Desert Storm components of the 1990-1991 Gulf War period. However, as part of the task force charge to develop innovative and forward-looking solutions, it identified lessons learned from past practices and policy that can be applied to today's programs and services supporting the Operation Enduring Freedom/Operation Iraqi Freedom cohort.

Service-Connected Disability Ratings

One of the greatest concerns facing veterans from the Gulf War era who have filed for disability is that some veterans were continuing to suffer from symptom clusters that could not be attributed to known diseases or disabilities through conventional medical diagnostic testing and that these veterans were "falling through the cracks" within the current disability compensation scheme. The existing VA system of benefits was designed with a more traditional understanding of medical conditions, and was not initially equipped to deal with the unexplained illnesses that began to surface from Gulf War veterans.

Due in part to the recommendations of the GWVI-TF, rule-making is underway to add additional diseases to the list of those subject to the presumption of service connection based on qualifying Gulf War service. Based on evidence provided by the National Academy of Sciences on chronic diseases associated with service in Southwest Asia, additional rules to ensure that veterans can efficiently access the benefits they've earned may also be forthcoming. The American Legion stresses that the lessons learned from the long uphill battle faced by Vietnam veterans in dealing with the aftereffects of the herbicide Agent Orange must continue to be implemented with the new spate of conditions resulting potentially from environmental hazards. As is the case with Agent Orange, research must be continuously examined, and where sound medical principles support the addition of new presumptive conditions or new understandings of existing conditions VA must adjust their procedures to ensure these veterans receive equitable benefits.

Recently, the VBA Compensation and Pension (C&P) Service has developed two training letters designed to inform and instruct regional office personnel on development and adjudication of disability claims based on Southwest Asia service. Training Letter 10-01, titled "Adjudicating Claims Based on Service in the Gulf War and Southwest Asia", was released on February 4, 2010. This training letter provides background information on the Gulf War of 1990-1991, and explains the initial 1994 and subsequent 2001 legislation found in Title 38 United States Code, Section 1117, which was a response to the ill-defined disability patterns experienced by returning Gulf War veterans. It explains the terms "undiagnosed illness" and "medically unexplained chronic multi-symptom illness" used in the legislation, and stresses that service connection may be granted for other diagnosed chronic, multi-symptom illness in addition to chronic fatigue syndrome, fibromyalgia, and irritable bowel syndrome, which are identified as examples in the legislation. It also provides step-by-step procedures for procuring supporting evidence and for rating a disability claim based on Southwest Asia service under Section 3.317 of the Code of Federal Regulations.

The training letter includes a separate memorandum to be sent with the VA medical examination request so that examiners are informed of the issues related to qualifying chronic disabilities and better able to evaluate a Gulf War veteran's disability pattern. Here, The American Legion cannot state more firmly that coordination between VBA and VHA elements in the understanding of these disorders must be consistent. All too often in American Legion Quality Review visits to Regional Offices, we see apparent disconnect between VBA and VHA elements in the claims process. Without a full understanding by both sides of the equation, veterans' claims will suffer from poor interpretation and these veterans will continue to slip through the cracks.

VA is additionally providing information on environmental hazards in Iraq and Afghanistan, as well as other areas, and is working in close coordination with DoD. This should enhance the understanding of environmental hazards associated with Gulf War and Southwest Asia service outside of the original Gulf War. They are discussing airborne toxic substances resulting from the widespread use of burn pit fires to incinerate a variety of waste materials in Iraq and Afghanistan, as well as hexavalent chromium contamination at the Qarmat Ali water treatment plant in Basrah, Iraq, from April through September 2003.

With regard to the growing understanding of these environmental contaminations, not only overseas but also with regard to situations such as the groundwater contamination at Camp Lejeune in North Carolina, The American Legion's Comprehensive Resolution on Environmental Exposure could not be more clear: veterans must be provided examinations and treatment which is thorough and appropriate, and that all necessary action be taken by the Federal government, both administratively and legislatively as appropriate, to ensure that veterans are properly compensated for diseases and other disabilities scientifically associated with a particular exposure. This requires close monitoring of the development of all ongoing research on the long-term effects of all environmental exposures and point out to the proper officials any perceived deficiencies or discrepancies in these projects; and ensuring that government committees charged with review of such research are composed of impartial members of the medical and scientific community.

Education and Outreach

The American Legion continues to encourage ill Gulf War veterans to seek timely access to quality health care within VA through numerous venues - pamphlets, articles in The American Legion Magazine, Department Service Officers, and word of mouth. In 1996, with enactment of eligibility reform, The American Legion aggressively encouraged all veterans to enroll in the VA health care delivery system. Enrollment quickly grew yet still many ill Gulf War veterans continued to resist returning to VA medical facilities.

VA's outreach was limited to a sporadic publishing of a periodical entitled the Gulf War Review and information on their website. Each provides updates as to developments on Gulf War illness related issues.

VA has moved forward to some extent with increased internal education of their medical and benefits related staff; however the mission of increasing understanding of the medical factors involved for the actual veterans who have served still lags far behind what is necessary. Veterans Service Organizations must pick up the slack with their own advocacy efforts. To be sure, The American Legion is positioned well within the community to provide information to veterans through materials such as our pamphlets on "Gulf War Era Benefits & Programs", and our Department Service Officers are trained annually to ensure the information they provide to veterans is the most current. However, actions such as these do not void VA's responsibility to provide this information directly to veterans. All too often when we are able to convey information to veterans, the response we receive is that this is the first time they have heard much of the material. This cannot be allowed to happen. This information should come straight from the horse's mouth to the veteran. VA cannot continue to rely on veterans' groups as the near sole provider of this valuable information to our nation's veterans.


The most revealing comment we have heard from the ill Gulf War veterans that we have talked to was their answer to one simple question, "If you had it all to do over again and your unit was deployed to the Persian Gulf, would you go?"

The answer was unanimous - "Absolutely!"

Mr. Chairman and Members of this Subcommittee, these young men and women did not fail us - we, as a nation, have failed them. However, we continue to be engaged on this battlefield and the battle is not lost. VA must move forward to elevate their attention to these conditions in a manner that learns the hard lessons of the battle against Agent Orange-related disease. The time to act is sooner, not later. The more aggressively we attack this problem in the now, the less we will struggle with solutions in the future.

Wednesday, August 25, 2010

Study: Bipolar Disorder Common in Fibromyalgia, a Presumptive Condition for Gulf War Veterans

Written by Jessica Ward Jones, MD, MPH Associate News Editor, Psych Central

Reviewed by John M. Grohol, Psy.D.

(Psych Central) - Many fibromyalgia patients may also suffer from bipolar disorder as well as depression.

New research suggests that just over 25 percent of patients with fibromyalgia also have symptoms of bipolar disorder.

According to Dr. William Wilke from the Cleveland Clinic in Ohio and his colleagues, “the most important finding of our study pertains to the high prevalence of a positive screen for bipolar disorder in patients with fibromyalgia.”

Fibromyalgia is a condition which causes painful muscle, joint and body aches.  More common in women, it can also cause fatigue, daytime fatigue, and other symptoms.  The causes are unknown and may affect up to five percent of the population. It is thought that depression can at some point affect 90 percent of patients with fibromyalgia.  According to the National Institute for Mental Health, depression affects 6.7 million Americans a year, and bipolar disorder affects 2.6 million.

To determine the frequency of bipolar disorder in patients with fibromyalgia, Wilke and his colleagues assessed 128 consecutive fibromyalgia patients who had been newly referred to a rheumatology practice.   The patients were asked to complete four different questionnaires, the Mood Disorder Questionnaire (MDQ) for bipolar disorder, the Beck Depression Inventory (BDI), the Epworth Sleepiness Scale (ESS) for daytime sleepiness, and the Fibromyalgia Impact Questionnaire Disability Index (FIQ-DI).

Wilke found that of the fibromyalgia patients, according to the MDQ screen, 25.19 percent of the patients were likely to have bipolar disorder.

Over 78 percent of the fibromyalgia patients were clinically depressed according to the BDI.

The Epworth Sleepiness scale revealed that 52.13 percent of the patients reported daytime sleepiness.

Of the patients who tested positive for bipolar disorder, their depression was measured as more severe according to the BDI.

In addition, of the patients who screened positive for depression, almost one third also screened positive for bipolar disorder as well.

Wilke’s team found that, with the exception of severe depression, there were no other clinical clues that suggested depression or bipolar disorders except for the screening questionnaires. “Clinical data and questionnaire instruments other than nonspecific high depression severity failed to identify these patients.”

The authors also point out that certain medications used in treatment of fibromyalgia may have the potential of triggering mania in some bipolar patients.  ”We urge that bipolar disorder risk be carefully assessed in all patients with fibromyalgia prior to initiation of drug therapy, particularly since norepinephrine serotonin reuptake inhibitors may carry elevated risk for induction of mania.”

Wilke’s results can be seen in the August edition of the medical journal Bipolar Disorders.

Related News Articles

Related Clinical Articles

NPR: Remembering The First Gulf War, 20 Years On

(NPR) - In August of 1990, Saddam Hussein's army marched into Kuwait, prompting the launch of Operation Desert Storm.

American and coalition forces crushed the Iraqi military, but stopped short of toppling Hussein -- a move some critics say set the stage for the current war in Iraq.

Two veterans of Desert Storm look back at the legacy of the first Gulf War in this NPR exclusive, which notes that Gulf War Illness is one of the war’s lasting legacies.

See the FULL STORY here.

Virus link to chronic fatigue studied

Editor’s note:  Chronic, debilitating fatigue is among the most commonly reported Gulf War Illness symptoms.  Chronic Fatigue Syndrome is a presumptive condition for VA service-connected disability claims.


Written by the Associated Press

(WASHINGTON – AP)  — A U.S. government study has uncovered a family of mouse viruses in some people with chronic fatigue syndrome, raising still more questions about whether an infection may play a role in the complicated illness.

Monday's study does not prove that having any of these viruses causes harm, stressed co-author Dr. Harvey Alter of the National Institutes of Health.

But it strengthens suspicions, and the government has additional research underway to determine if the link is real or not.

Meanwhile, a group of French and Canadian scientists said it's time to test whether antiviral medications like those used against HIV might treat at least some people with chronic fatigue.

The virus connection first made headlines last fall when Nevada researchers reported finding a specific type, named XMRV, in the blood of two-thirds of the 101 chronic fatigue patients they tested. But several other studies, including one from the Centers for Disease Control and Prevention, failed to find XMRV virus in patients, making researchers wonder if this was a false alarm.

Monday's study, published in Proceedings of the National Academy of Sciences, thickens the plot. This time, NIH and Food and Drug Administration scientists examined the blood of 37 chronic fatigue patients and again didn't find XMRV — but instead they found a group of closely related bugs named MLV-related viruses in 86% of the cases.

Testing of 44 healthy blood donors, in contrast, found evidence of those viruses in nearly 7%.

Various viruses have been linked to chronic fatigue over the years only to fall by the wayside as potential culprits in the mysterious illness thought to afflict about 1 million Americans. It's characterized by at least six months of severe fatigue, impaired memory and other symptoms, but there's no test for it and no specific treatment.

These MLV, or "murine leukemia-related viruses," are known to cause some cancers in mice, and the XMRV relative has been found in some human prostate tumors, too.

But there's no easy way to test for it, meaning studies of a link at this point must be in research labs, not doctors' offices, FDA and NIH researchers said Monday.

No one knows how people become infected, but Alter said a major study is underway to see if there's any evidence of transmission through blood.

In the meantime, federal regulations require that blood donors be in good health, said FDA's Dr. Hira Nakhasi.

Tuesday, August 24, 2010

Gulf War Veteran with Terminal Brain Cancer Leads Texas Support Group

By Alex Hinojosa \ El Paso Times

Clemencia Prieto, right, points out the amount of research Robert Lefferts, left, has done to help the support group at the Rio Grande Cancer Foundation. (Fernie Castillo / El Paso Times)

(El Paso Times – El Paso, Tex.) -- The diagnosis of a brain tumor feels like a death sentence for many patients.

But a new support group in East El Paso is helping a small group of survivors face their conditions and look toward the future.

The group is small, but its members' goal is not. They want to live one more year without a recurring brain tumor.

The eight-member Brain Tumor Support Group meets at the Del Sol Regional Oncology center and is led by a Gulf War veteran and former Fort Bliss air defense soldier, Robert Lefferts.

It is the first brain tumor support group recognized by the Rio Grande Cancer Foundation.

The second Tuesday of every month, its members share information and their frustrations and triumphs with brain cancer.

"I've done some remodeling on my home," Augie Vega said during a recent meeting. "People are wondering what I'm doing, but I couldn't just sit at home anymore. I had to get up and do something, and because of that my upper-body strength is finally coming back."

Vega has stage 2 Oligodendroglioma brain cancer.

Lefferts, wearing a self-designed shirt that reads, "I will never stop fighting. You can beat Brain Cancer too," offered words of encouragement during a recent meeting.

"That's right. You don't just lie and wait," he said. "Cancer doesn't control you. You are in control of the cancer."

Lefferts was diagnosed in late 2009 with terminal brain cancer -- stage 4 glioblastoma multiforme. Doctors told him he only had about a year to live.

The news sent him into a depression.

But after a reading "The Last Lecture" by Randy Pausch, and visiting, his military discipline pushed him to pick himself up.

"I had two options, to lay there and just die or do so something about it," Lefferts said. "I decided to find out everything I could about my disease. And I fired my first doctor and went to get a second opinion."

To find answers, support and inspiration, he turned to books and the Internet.

At first, he found nothing but death. He found descriptions of symptoms that led to a final end.

But he continued to push forward and found inspiration through survivors who lived 20 years -- a rarity because most patients with his diagnosis are typically given about 18 months to live.

"I wanted to do something and reach out to people like me that need help," Lefferts said. "When I searched for local support, there was no one that specifically held a support group for those with brain tumors, brain cancer or for their families and caregivers. So I decided to start my own."

He has become an advocate for himself and others with brain tumors, and he grills his doctors about his disease.

"I record every piece of information I receive," Lefferts said. "Afterward, I take the information the doctor told me and pass along the information. I pick up books, pamphlets and any other information I can get my hands on, and then I pass it on. Everyone should be educated about their disease."

He also tries to stay in touch with longtime survivors and uses them as a source of inspiration for himself and others.

"The main thing to do in our group is to set goals and never give up," Lefferts said. "With goals you remained focused and determined. My goal is to make it to make it to the next five years."

Information about the support group: Jutta Ramirez at 562-7660 or Robert Lefferts at 585-1551 and at

More information

  • Who: Patients and families or caregivers of patients diagnosed with brain cancer, brain tumors or both.

  • When: Second Tuesday of every month.

  • Where:"10460 Vista Del Sol Drive, Suite 101.

  • Time:"5:30 p.m. to 7:30 p.m.

  • Contact: Jutta Ramirez at 562-7660 or Robert Lefferts at 585-1551 and at

  • For more information about brain cancer: Visit the National Brain Tumor Society at or the American Cancer Society at

    Monday, August 23, 2010

    New Research Shows Craniosacral Therapy Reduces Chronic Pain, a Common Gulf War Illness Symptom


    (Massage Magazine) - Craniosacral therapy, a light-touch bodywork technique practiced by many massage therapists, has been found in new research to provide "significant reduction in pain" in fibromyalgia patients.

    The randomized, controlled trial investigated the effects of craniosacral therapy on pain and heart rate variability in fibromyalgia patients, according to a report published on It was conducted by researchers from the Department of Nursing and Physical Therapy at the University of Almería, in Spain.

    "Fibromyalgia is a prevalent musculoskeletal disorder associated with widespread mechanical tenderness, fatigue, non-refreshing sleep, depressed mood and pervasive dysfunction of the autonomic nervous system: tachycardia, postural intolerance, Raynaud's phenomenon and diarrhea," the researchers noted.

    Ninety-two patients with fibromyalgia were randomly assigned to an intervention group or placebo group, according to the report. Patients received treatments for 20 weeks. The intervention group underwent a craniosacral therapy protocol and the placebo group received sham treatment with disconnected magnetotherapy equipment.

    Results include:
    • After 20 weeks of treatment, the intervention group showed significant reduction in pain at 13 of the 18 tender points;
    • At two months and also at one year post therapy, the intervention group still showed significant differences in pain reduction versus baseline in several tender points.

    "Craniosacral therapy improved medium-term pain symptoms in patients with fibromyalgia," the researchers concluded.

    Results of the study are running in the Aug. 11 issue of Clinical Rehabilitation.

    Related articles
    Craniosacral Therapy Eases Multiple Sclerosis Symptoms
    Manual Lymph Drainage Therapy and Connective Tissue Massage Ease Fibromyalgia Symptoms
    Spa Therapy for Fibromyalgia
    Massage Improves Sleep, Decreases Pain and Substance P in Fibromyalgia Patients

    Sunday, August 22, 2010

    Study: Nighttime Breathing Machine Can Alleviate Sleep, Other GWI Symptoms

    Written by Anthony Hardie,

    ( - A new scientific study published in the August 19, 2010 edition of the medical journal Sleep and Breathing shows that a machine can help relieve sleep and other symptoms in veterans of the 1991 Gulf War suffering from Gulf War Illness.

    The machine, called a Continuous Positive Airway Pressure (CPAP), is connected by the patient while sleeping to a tube connected to the nasal passageways, or sometimes using a slightly larger face mask that also covers the mouth. 

    In the study, sleep and other GWI symptoms showed great improvement.

    Previous studies have found conditions related to disturbed sleep in Gulf War veterans suffering from Gulf War illness, including apneas and hypopneas, pauses in breathing and insufficient oxygen inhalation during breathing while sleeping.   

    This latest study suggests a possible treatment that might help alleviate some of Gulf War veterans’ symptoms.

    For many years, the U.S. Department of Defense (DoD) focused its studies related to Gulf War veterans’ illnesses almost exclusively on stress.  Under continuous pressure from ill Gulf War veterans, including through Congress hearings, a new research focus aimed at treatments and improving the health and lives of Gulf War veterans was begun in 2006.

    Predictably since that new focus, scientific study results from a number of fields, including neurology, sleep medicine, rheumatology, gastroenterology, and others have begun unraveling the so-called “mysteries” of Gulf War illness. 

    Studies like this one may provide real benefit for ill Gulf War veterans. 

    CPAP machines are available through VA sleep clinics at VA medical centers.  The newest CPAP machines can also serve as a form of diagnosis by monitoring and recording the time, duration, and nature of sleep disturbance episodes.

    The study’s abstract is below for those more scientifically minded.


    The effect of nasal continuous positive airway pressure on the symptoms of Gulf War illness

    By Mohammad M. Amin, Morris S. Gold, Joan E. Broderick and Avram R. Gold


    We performed a pilot study to determine whether nasal continuous positive airway pressure (CPAP) alleviates the symptoms of veterans with Gulf War illness (GWI) and sleep disordered breathing (SDB).


    Eighteen male veterans with GWI and SDB recruited by advertisement, participated in a randomized, single-masked, sham-controlled treatment trial. Participants received 3 weeks of treatment during sleep with either therapeutic nasal CPAP or sham nasal CPAP. Using validated questionnaires, pain, fatigue, cognitive function, sleep disturbance, and general health were assessed by self-report before and after treatment. One of the participants assigned to therapeutic CPAP was excluded from the trial before starting treatment, leaving 17 participants.


    Compared to the nine sham nasal CPAP recipients, the eight participants receiving therapeutic nasal CPAP experienced improvements in pain (34%; p = 0.0008), fatigue (38%; p = 0.0002), cognitive function (33%; p = 0.004), sleep quality (41%; p = 0.0003), physical health (34%; p = 0.0003), and mental health (16%; p = 0.03).


    Our findings in this pilot study suggest that nasal CPAP may greatly improve symptoms in veterans with GWI and SDB.

    Keywords  Gulf war illness - Functional somatic syndromes - Nasal continuous positive airway pressure - Sleep disordered breathing - Sleep stage shifts

    Study: Tai Chi improves symptoms of fibromyalgia, a Presumptive Condition for Gulf War Veterans


    Written by Shari Roan, Los Angeles Times

    People with fibromyalgia have to think creatively for relief from their symptoms. There are only a few approved medications for the condition, which causes chronic aches and pains, sleep disturbances, fatigue and depression. Many patients opt for a combination of medications, lifestyle changes and cognitive behavioral therapy to remain functional.

    A study released Wednesday suggests that tai chi, a Chinese form of martial arts, significantly improves symptoms. Tai chi is a mind-body practice that uses gentle movement, breathing exercises and relaxation to move energy -- called qi -- throughout the body. In the study, researchers at Tufts Medical Center in Boston assigned 33 fibromyalgia patients to a tai chi program and 33 patients to a program consisting of wellness education and stretching. Both groups participated in one-hour sessions, twice a week for 12 weeks.

    The study, published in the New England Journal of Medicine, found that the patients in the tai chi group improved much more than the control-group patients. On a 100-point scale that measures fibromyalgia symptoms, with 100 being the most severe, the tai chi patients' scores decreased an average of 27.8 points compared to 9.4 points in the control group. More people in the tai chi group stopped taking their medications and reported better sleep quality and less pain and depression.

    How tai chi works to reduce fibromyalgia symptoms is unknown, but it is likely a multi-factorial impact that includes improved muscle strength, psychosocial well-being, relaxation and rest that "may raise pain thresholds and help break the 'pain cycle,' " the authors wrote.

    An editorial accompanying the paper called the results "striking" but said it's too early for a doctor to "take out a prescription pad and write 'tai chi.' " The results of the study could be due to an enthusiastic tai chi teacher and the well-known placebo effect, the authors of the editorial wrote. Future studies should rigorously test similar therapies, such as yoga, to compare results. And, they note, mind-body exercise programs may not help everyone.

    FBI Agent, 19 Others Vote Against Narcolepsy Drug For Fibromyalgia, a Presumptive Condition for Gulf War Veterans

    Written By Katherine Hobson, Wall Street Journal

    (Wall Street Journal) - An FDA panel of outside experts — including an FBI agent! — voted against expanding the use of Jazz Pharmaceuticals’ narcolepsy drug to fibromyalgia, in part because of its potential as a street drug.

    An illegal form of sodium oxybate is similar to the drug GHB, Dow Jones Newswires reports. As the NPR Shots Blog noted in the run-up to the meeting, GHB gained notoriety for its use as a date rape drug. Right now sodium oxybate is distributed for use against narcolepsy only under heavy restrictions, and while panel members agreed it seemed effective against fibromyalgia symptoms in some patients, they were concerned about the potential for its misuse.’s Adam Feuerstein, who live-blogged (and Tweeted) the advisory panel’s meeting, reported that an FBI agent was invited by the FDA to participate in the panel, presumably because of the questions about the drug’s way-way-way-off-label potential. She and 19 others voted no on the critical question of whether the benefits of marketing the drug to treat fibromyalgia outweighed the risks. Two panelists voted yes. (The company, obviously, said at the meeting that it believes the benefits do outweigh the risks, DJN reports.)

    The panel didn’t shut the door forever on the drug, saying Jazz should keep working on it as a possible fibromyalgia therapy, DJN says. “While we are disappointed with the recommendation” of the committee, “we plan to work closely with FDA on the continuing review of our new drug application,” said Bruce Cozadd, chairman and CEO of Jazz, in a statement. The company will “carefully consider” the committee’s input as it “seeks to address the needs of fibromyalgia patients for new treatment options in a safe and reasonable way.”

    The concerns about potential abuse and misuse were highlighted in the documents the FDA itself released earlier this week, in advance of this meeting. Say it together with feeling, everyone: The FDA usually, but doesn’t always, follows the advice of its advisory panels.

    Saturday, August 21, 2010

    Dr. Robert Haley’s Theories on Gulf War Illness Updated

    Written by the Division of Epidemiology, University of Texas-Southwestern

    (UT-Southwestern – Dallas, Tex.) - Dr. Robert Haley and colleagues at UT Southwestern have been conducting epidemiologic, clinical and laboratory research on the "Gulf War syndrome" and related neurologic illnesses in Gulf War veterans since March 1994. The work has been supported by a continuing grant from the Perot Foundation and by a cooperative agreement with the U.S. Department of Defense. The objectives of the research are to define new or unique clinical syndromes among Gulf War veterans, determine their causes, identify areas of damage or dysfunction in the brain and nervous system responsible for the symptoms, develop a cost-effective battery of clinical tests that can diagnose the illness, search for underlying genetic traits that might predispose to the illness, and perform clinical trials of promising treatments.

    The initial studies identified three primary syndromes in a Naval reserve construction battalion (seabees) that appear to be unique, demonstrated that the syndromes are associated with subtle dysfunction of the brainstem and lower parts of the brain, and found epidemiologic associations between the syndromes and risk factors of exposure to combinations of chemicals in the Gulf War.

    Genetic studies have identified a genetic trait (PON1 enzymes) that may explain why some soldiers sustained brain damage from exposure to neurotoxic chemicals while others working alongside them remained well. Most recently, research using magnetic resonance spectroscopy has demonstrated a loss of functioning brain cells in deep brain structures of ill Gulf War veterans. Additional commentaries by Dr. Haley have challenged the government's stress theory of Gulf War syndrome and findings of no difference in mortality, hospitalization and birth defects between Gulf War-deployed and nondeployed military populations. Additional research and publications are in process.

    1. A list of the papers published in peer-reviewed scientific journals.

    2. Findings showing that there is a Gulf War syndrome, it is due to organic neurologic dysfunction, and it is associated with exposure to combinations of chemicals in the Gulf War.

    3. Dr. Haley's refutation of the stress theory of Gulf War illness.

    4. Dr. Haley's refutation of government research showing no increase in mortality, hospitalization, or birth defects in Gulf War veterans compared with the nondeployed military population

    5. Findings on the genetic predisposition to Gulf War Syndrome.

    6. Findings linking dizziness in Gulf War Veterans to subtle brain injury.

    7. Findings on brain cell loss by magnetic resonance spectroscopy.

    8. Findings on abnormal brain dopamine levels.

    9. Stress does not cause pyridostigmine to enter the brain.

    VA Claims Office Snafu Raises Concerns for Gulf War Veteran Disability Claims, Retaliation


    Editor’s Note:  VA Officials who read this website should ensure immediate action is taken by VA to quickly and thoroughly investigate this allegation of relation against a Gulf War veteran.


    Written By Glenn McBride

    I embarrassed the Roanoke Virginia VARO back in April of this year [see story below], and they have been gunning for me every since. Here is the Fox News story.

    I went in to the Roanoke VARO on Tuesday the 17th of August 2010 and a veteran asked me for advice as he heard me talking to my friend about his VA problems. I assisted the veteran in filing a 4138 requesting a copy of his entire C&P file from the VARO. Within minutes I was arrested by 3 armed federal protective service guards and 2 level 8 VA managers. The charge was solicitation.

    I would appreciate the opportunity to get this into the media. If veterans are not free to speak to each other about their VA claims while on VA property, do we really have freedom of speech?


    Written by Jana Winter,

    Photo courtesy of Glenn McBride

    ( - Glenn McBride, a 14-year veteran of the Army, received a perplexing letter from the Department of Veterans Affairs that included a request for more information about his "menstrual disorder."

    Last month, a decorated Gulf War hero received a letter from the Veterans Affairs Administration that said: We are working on your claim for menstrual disorder.

    There was just one problem: The claim was submitted for fibromyalgia.

    Make that two problems: The claim was submitted by Glenn McBride, a 40-year-old man from Roanoke, Va., who most definitely does not get menstrual cramps.

    It's a bad sign when your health insurance provider can’t figure out which gender reaches for the Midol. (Hint: it's the one without the prostate.)

    The Department of Veterans Affairs is notorious for bungling health care benefits, and its Roanoke regional office, which handled McBride's claim, has long been considered among the worst.

    Glenn McBride, pictured during Operation Desert Storm

    Time of Reckoning for Obama, Pelosi
    Ouch!10 Biggest Brand Nightmares of 2010
    Avoid Falling Victim to a Speed Trap
    Man Dies After Donating Part of Liver to Brother
    Birth Order Affects Child's Intelligence, Personality

    In September 2009 a surprise inspection found the office was collapsing under the weight of its own bureaucratic incompetence. Literally.

    Its filing system — floor-to-ceiling stacks of overfilled file cabinets and loose claims folders — weighed twice as much as the building's structure allowed, threatening the lives of everyone inside. Inspectors also found missing and improperly filed, stored and processed claims, among other problems. The regional office was ordered to overhaul the health care processing center completely.

    By last month, six months later, there should have been some improvement. Instead, McBride received a letter that included this perplexing request for additional information:

    "On the VA Form 21-4138, Statement in Support of Claim you sent on October 8, 2009, you included menstrual disorder. Please specify what you intended to claim for this condition."

    Click here to see the VA's menstrual letter.

    McBride, whose 14 years of Army service included a combat tour with one of the most highly decorated units during Desert Storm -- and did not include any complaints about menstrual cramps, so far as he can recall -- insists this was not just a clerical error. He says it's one more example of the VA ignoring or messing up claims in order to avoid paying benefits.

    "If the VA does not actually recognize the request, they do not have to give the award," he said. "Sort of like a perverted form of 'See no evil, Hear no evil, Speak no evil.' Most people just throw up their hands in frustration and walk away at this point. That is the VA's plan."

    The VA, asked to comment about McBride's complaint, issued a statement in which it said:

    "The Department of Veterans Affairs' (VA) mission is to be an advocate for Veterans. VA has a responsibility to assist Veterans during the claims process. Part of that duty is to include all possible issues that a Veteran references in his or her initial claim package. VA regrets any confusion that Mr. McBride's claim may have caused. VA Regional Office employees have reached out to Mr. McBride to clarify the confusion, determine the types of issues he wants to claim, and identify any outstanding concerns that he may have."

    Jim Strickland, a veterans advocate who writes a regular health care benefits column on and has his own benefits-related Web site, said he wasn't at all surprised to learn of McBride's "menstrual" letter. "There are 57 regional offices and every one is operating in total chaos and in crisis," he said. "Full frontal mass chaos. Every day."

    Contacted in the middle of the week, Strickland said he'd already received two e-mails from veterans who were mailed the records of other veterans. And he provided his most ridiculous example of a nonsensical claims letter, one that managed to try to collect debt and to discuss overpaying the same debt -- at the same time.

    For Gulf War veterans who fought during a certain time period, certain health conditions are considered presumptive, meaning that such a high percentage of that group has been diagnosed with the condition it's presumed that it was caused by military service, and coverage is automatically granted. Fibromyalgia, a chronic pain condition, is a presumptive one for McBride.

    Because of his years of experience dealing with the VA, McBride likes to provide as much information as possible when he submits claim forms. (He also gets a signed and time-stamped receipt upon delivery.) When he sent in his claim for fibromyalgia, he typed clearly at the top of the form: "This form is an official request for SERVICE-CONNECTION for FIBROMYALGIA." He included an extract of a VA "fast letter" regarding presumptive conditions — basically providing the VA with its own policy on Chronic Fatigue Syndrome, Fibromyalgia and Irritable Bowel Syndrome. "Menstrual disorder" is included in the VA's list of symptoms.

    "The VA just breezed right through the facts and settled on the obscure," McBride said. "The Roanoke office clearly hasn't changed."

    Strickland says the problem at the root of letters like McBride's is a bonus structure paid out to VA claims employees.

    "The more work, the better the bonus is," he said. "It's strictly volume, not quality driven. There is no accountability whatsoever.

    "The art of the Teflon Jacket has been perfected at our VA. They are really totally invulnerable to your criticism."

    When the editor of posted an April Fools Day joke -- "VA DOCTOR TRIES TO GIVE PROSTATE EXAM TO WOMAN VETERAN (April Fool); VA physician: 'Nobody told me the patient was a female. How the hell was I supposed to know that?'" -- McBride sent in his "menstrual" letter.

    It was posted on the same site under the heading, "Today's Whiskey Tango Foxtrot? award goes to the VA's Roanoke, Virginia Regional Office."

    The site's editor describes the award:

    "Every now and then we get a story about the VA that just can't be. But, it is! Because, remember, we're not dealing with regular people ... we're dealing with the VA. That's when we throw up our hands and scream at the sky:

    "'Whiskey Tango Foxtrot?'"

    Which is longhand for: WTF.

    Wednesday, August 18, 2010

    More evidence for fibromyalgia, suicide link

    By Genevra Pittman

    NEW YORK (Reuters Health) - A study of more than 8,000 Americans with fibromyalgia suggests that they are not at an overall increased risk of dying over a given time compared to people without the chronic pain condition.

    Rates of suicide and accidental deaths, however, were higher than average among people with fibromyalgia in the study. Still, the overall risk of suicide was still low and the findings don't prove that fibromyalgia symptoms cause suicide, the authors emphasize.

    The results, published in the journal Arthritis Care & Research, come one month after a study of Danish patients with fibromyalgia also found an increased risk of suicide in these patients compared to the general public, but no increased risk of death overall. (See Reuters Health story of July 16, 2010: Fibromyalgia comes with suicide risk: study)

    "This is an illness which seems to have major suffering associated with it, but isn't associated with physical changes that lead to increased risk of death," Dr. Frederick Wolfe, the study's lead author from the National Data Bank for Rheumatic Diseases in Wichita, Kansas, told Reuters Health.

    Fibromyalgia affects about 2 percent of the U.S. population and is much more common in women than men. People with fibromyalgia suffer from all-over pain and many feel tired all the time. They also have higher-than-average rates of psychiatric illness such as depression or anxiety.

    But there has not been definitive data on whether those with the condition have higher rates of death than the general population.

    To get at that question, Wolfe and his colleagues tracked patients who had been diagnosed with fibromyalgia between 1974 and 2009. Some of those patients were seen in a local clinic, while others had been referred to the National Data Bank.

    The authors collected information on patients' symptoms, including survey responses about their physical and mental health, and kept track of how many patients died from what causes over the course of the study. They were able to follow each patient for an average of 7 years.

    Over the course of the study, 539 of the approximately 8,000 fibromyalgia patients died. This is about what would be expected in a similar group of people in the United States without fibromyalgia over a 7-year period.

    Accidental deaths were responsible for 7.1 percent of deaths in people with fibromyalgia and 4.4 percent of deaths in these patients were from suicide. In a group of similar age and gender distribution but without fibromyalgia, 5 percent would be expected to die from accidents and 1.4 percent from suicide.

    Dr. David Marks, a psychiatrist at Duke University's Durham Regional Hospital in North Carolina who treats patients with fibromyalgia, said he was not surprised by the increased rate of suicide. Like the authors, though, he warned that the overall risk of suicide was still small.

    "Unfortunately, (fibromyalgia) is not taken very seriously in the medical community and the community at large," he told Reuters Health. "Sometimes patients don't get a lot of support."

    "These patients are very demoralized, they feel very isolated and alone," added Marks, who was not involved with the current research.

    Marks speculated that the increased rate in accidental deaths could be due to what's known as "fibro fog," when some people with fibromyalgia "kind of space out," he said.

    Marks hopes that the lack of a significant link between fibromyalgia and overall death rates in this study doesn't mean doctors will see the condition as less legitimate. Even if these patients aren't dying any faster than people without fibromyalgia, he said, they're still suffering. And doctors could do more to prevent and ease that suffering.

    "I think that overall we could probably do a better job meeting the psychiatric needs of fibromyalgia patients," Marks said. "Fibromyalgia in itself is not just a mood disorder or an anxiety disorder. It is a real phenomenon that needs to be taken more seriously."

    SOURCE: Arthritis Care & Research, online July 26.

    Monday, August 16, 2010

    Study: Veterans with GWI have increased frequency of Sleep disturbances due to Multiple Causes


    Written by Anthony Hardie

    ( - A new study says that veterans of the 1991 Gulf War with Gulf War Illness have measurable differences in their sleep that may distinguish them from their healthy counterparts.

    The study showed that veterans with GWI had an increased frequency of “arousals” from sleep, and that these arousals were related to three different causes:  apneas, hypopneas, and mild inspiratory airflow limitation

    Any of these conditions can lead to excessive daytime fatigue, and problems with memory, cognition, attention and learning – symptoms comm0nly reported by Gulf War veterans suffering from chronic multi-symptom illness. 

    Apnea is  a term for a reduction or pause in breathing and airflow and usually occur during sleep.  While every0ne has apneas from time to time, excessive apneas can be a serious medical condition that deprives the brain and body of needed oxygen.  Apneas are generally of two forms, which can occur separately or together:  “central sleep apnea” is caused by the part of the brain that controls breathing;  “obstructive” sleep apnea is caused by part of the throat or the tongue closing off the airway when the body relaxes during sleep. 

    Obstructive sleep apnea can be treated with the use of a CPAP machine used while sleeping.  There are currently no known treatments for central sleep apnea.

    Apneas are called “mixed” if they include both obstructive and central sleep apnea.

    Hypopnea is a medical term for a disorder which involves episodes of overly shallow breathing or an abnormally low respiratory rate, also known as “underbreathing.”  Hypopneas are less severe than apneas.  Both involve decreased levels of blood oxygen.

    Mild inspiratory airflow limitation is a term used to describe airflow disturbances that are of a lesser nature than apneas and hypopneas.

    The study, entitled, Inspiratory airflow dynamics during sleep in veterans with Gulf War illness: a controlled study, was published in the August edition of “Sleep Breath," a specialized, peer-reviewed scientific journal. 

    Led by Dr. MM Amin and colleagues, the study was conducted in the Sleep Medicine division of the Northport VA Medical Center in New York state.

    Further information on the study is available online from PubMed:

    DoD Creates 20th Anniversary Website

    DoD has created a web page on the 20th Anniversary. It is called Desert Shield and has timeline/reminisces/news stories and more.

    To see it go to:

    Thursday, August 12, 2010

    VA Provides information to Veterans on Burn Pits

    The federal VA has provided the following information on its Burn Pit webpage, including linked from the Gulf War webpage (


    Information about potential exposure to toxins from burn pits, possible health-related problems and VA benefits

    Open air burn pits have been used extensively in the current conflicts in Iraq and Afghanistan to dispose of waste.

    Many returning Veterans have expressed health concerns related to their exposure to smoke from burning trash and human waste.


    Exposure to Toxins from Burn Pits

    Man throwing trash into a burn pit
    Photo credit: U.S. Department of Defense

    The smoke from burning waste may release a variety of toxins into the air, which may blow into living and working areas.

    The make-up of the smoke from burn pits:

    • Depends on what is being burned
    • May not be consistent from burn pit to burn pit
    • May not be the same over any period of time at any one burn pit
    Types of Waste Burned

    Waste products include, but are not limited to:

    • Chemicals (e.g., paints, solvents)
    • Incomplete combustion by-products
    • Medical and human waste
    • Metal/aluminum cans
    • Munitions and other unexploded ordnance
    • Petroleum and lubricant products
    • Plastics and styrofoam
    • Rubber
    • Wood waste


    Possible Health Problems from Exposure to Toxins

    Exposure to specific individual toxins may affect the skin, respiratory system, eyes, liver, kidneys, central nervous system, cardiovascular system, reproductive system, peripheral nervous system, and gastrointestinal tract.

    Institute of Medicine Study on Health Effects

    In November 2009, at the request of VA, the National Academy of Sciences Institute of Medicine (IOM) began an 18-month study to determine the long-term health effects of exposure to burn pits in Iraq and Afghanistan.

    The report for the study should be completed and available by summer 2011.


    VA Benefits

    Veterans who were exposed to toxins released by burn pits during military service may be eligible for:


    More Information on Burn Pits

    Wednesday, August 11, 2010


    Secretary Eric K. Shinseki

    August 2010 marks the 20th anniversary of the beginning of the Gulf War, launched with Operation Desert Shield and followed by Operation Desert Storm. VA honors this milestone with a renewed commitment to improving our responsiveness to the challenges facing Gulf War Veterans.

    First and foremost, VA is an advocate for Veterans – we are committed to finding innovative solutions to long standing issues and to empowering Veterans and other stakeholders to be a part of the solution.

    VA recognizes and values the selfless service and sacrifice of Gulf War Veterans and their families, and continues our efforts to address the unique health needs of Gulf War Veterans.

    Today, more than 250,000 Operations Desert Storm and Desert Shield Veterans receive disability benefits from VA. VA has treated nearly 150,000 Operations Desert Storm and Desert Shield Veterans for illnesses associated with their military service. We vow to reach more of these Veterans and have taken steps to do so. Earlier this year, VA proposed a new rule to make it easier for Gulf War-era Veterans to obtain disability compensation and related health care. This rule, once it takes effect, will grant presumptive service-connection for nine infectious diseases associated with military service in Southwest Asia and Afghanistan.

    In addition, VA’s ongoing Gulf War research and Task Force efforts continue to examine multisymptom illnesses, and other conditions associated with service in this conflict. VA continues to participate in Federal research efforts on Gulf War illnesses, contributing more than $158 million of the $406 million in total Federal commitment.

    VA is taking bold steps forward in how we consider and address the challenges facing Gulf War Veterans as well as the challenges facing all Veterans. Our commitment to the Nation’s Veterans is unwavering.

    As your Secretary and fellow Veteran, I pay tribute to all of you who so bravely served and thank all Gulf War Veterans for their heroic efforts. Our Nation owes you a debt of gratitude. We acknowledge and honor the contributions of your service. Thank you.

    --Eric K. Shinseki

    Low Level Sarin can have negative effects on Brain Structure, Function Long After Exposure


    Effects of low-level exposure to sarin and cyclosarin during the 1991 Gulf War on brain function and brain structure in US veterans

    Linda L. Chaoa, b, c, Johannes C. Rothlindb, Valerie A. Cardenasa, c, Dieter J. Meyerhoffa, c and Michael W. Weinera, b, c

    a Center for Imaging of Neurodegenerative Diseases, San Francisco Veterans Affairs Medical Center, 4150 Clement Street, 114 M, San Francisco, CA, 94121, United States

    b Department of Psychiatry, University of California, San Francisco, San Francisco, CA, United States

    c Department of Radiology and Biomedical Imaging, University of California, San Francisco, San Francisco, CA, United States

    Received 10 December 2009;  accepted 16 May 2010.   Available online 24 May 2010.



    Potentially more than 100,000 US troops may have been exposed to the organophosphate chemical warfare agents sarin (GB) and cyclosarin (GF) when a munitions dump at Khamisiyah, Iraq was destroyed during the Gulf War (GW) in 1991. Although little is known about the long-term neurobehavioral or neurophysiological effects of low-dose exposure to GB/GF in humans, recent studies of GW veterans from the Devens Cohort suggest decrements in certain cognitive domains and atrophy in brain white matter occur individuals with higher estimated levels of presumed GB/GF exposure. The goal of the current study is to determine the generalizability of these findings in another cohort of GW veterans with suspected GB/GF exposure.


    Neurobehavioral and imaging data collected in a study on Gulf War Illness between 2002 and 2007 were used in this study. We focused on the data of 40 GW-deployed veterans categorized as having been exposed to GB/GF at Khamisiyah, Iraq and 40 matched controls. Magnetic resonance images (MRI) of the brain were analyzed using automated and semi-automated image processing techniques that produced volumetric measurements of gray matter (GM), white matter (WM), cerebrospinal fluid (CSF) and hippocampus.


    GW veterans with suspected GB/GF exposure had reduced total GM and hippocampal volumes compared to their unexposed peers (p ≤ 0.01). Although there were no group differences in measures of cognitive function or total WM volume, there were significant, positive correlations between total WM volume and measures of executive function and visuospatial abilities in veterans with suspected GB/GF exposure.


    These findings suggest that low-level exposure to GB/GF can have deleterious effects on brain structure and brain function more than decade later.

    Study: Exercise Alters Pain Sensitivity in Gulf War Veterans With Chronic Musculoskeletal Pain

    Dane B. Cook, Aaron J. Stegner and Laura D. Ellingson

    Department of Kinesiology, University of Wisconsin, Madison,Wisconsin


    Since returning from the Persian Gulf, nearly 100,000 veterans of the first Gulf War (GVs) have reported numerous symptoms with no apparent medical explanation. A primary complaint of these individuals is chronic musculoskeletal pain (CMP). CMP symptoms in GVs are similar to those reported by patients with fibromyalgia (FM), but have not received equivalent scientific attention. Exercise research in CMP patients suggests that acute exercise may exacerbate pain while chronic exercise can reduce pain and improve other symptoms. However, the influence of exercise on GVs with CMP is largely unexplored. This study examined the impact of an acute bout of exercise on pain sensitivity in GVs with CMP. Thirty-two GVs (CMP, n = 15; Control, n = 17) were recruited to complete a series of psychophysical assessments to determine pain sensitivity to heat and pressure stimuli before and after exercise. In response to heat-pain stimuli, GVs with CMP reported higher pain intensity and affect ratings than healthy GVs and exhibited a significant increase in ratings following exercise. GVs with CMP rated exercise as more painful and effortful and were generally more sensitive to heat-pain stimuli than healthy GVs. These results are similar to what has been reported for acute exercise in patients with FM.


    Gulf War veterans with CMP perceive exercise as more painful and effortful than healthy GVs and experience increased pain sensitivity following exercise. These results suggest that similar abnormalities in central nervous system processing of nociceptive information documented in FM may also be occurring in GVs with CMP.

    Tuesday, August 3, 2010

    VA issues updated Gulf War Review newsletter, poster commemorating 20th anniversary of Desert Shield

    Newsletters — Gulf War Review for Operations Desert Shield and Desert Storm Veterans

    The Environmental Agents Service publishes the Gulf War Review newsletters, providing information especially for Veterans who served in Operations Desert Shield and Desert Storm.

    Subscribe to the Gulf War Review newsletter.

    Gulf War Review July 2010 newsletter cover page

    Current Newsletter

    July 2010 - Vol 17, No 1 (443 KB, PDF)
    Secretary Shinseki Marks 20th Anniversary of Gulf War with Renewed Pledge to Improve Care and Services to Gulf War Veterans, VA Seeks to Cover New Illnesses for Gulf War Veterans...

    View all newsletters


    Poster — Gulf War 20th Anniversary

    Thumbnail of Gulf War 20th Anniversary Poster with timeline and photos

    Gulf War 20th Anniversary — Poster 10-337


    Gulf War 20th Anniversary 11" x 17" (915 KB, PDF)

    Gulf War 20th Anniversary 8.5" x 11" (796 KB, PDF)

    Description: A commemorative poster with a timeline and a dozen historical photos related to the Gulf War

    Maybe it’s Fibro? Free Webinar August 12th

    Maybe It's Fibro?

    “Maybe It's Fibro?”
    The Fibro Experience: Perspectives from Peers and Nursing
    Thursday, August 12th - 8 pm Eastern time

    maybe its fibro face pics

    Please join us on Thursday, August 12th at 8 pm Eastern time for a one-hour, live webinar, “Maybe It’s Fibro?” featuring guest speakers who will provide information on fibromyalgia and discuss the chronic widespread pain condition from the perspective of nurses and people living with fibro. We will explore:

    • self-management and coping strategies,

    • the concept of the nurse as an ally,

    • how a nurse’s training and role can advance patient care and management,

    • tips on what people living with fibro can do to aid in their pain management plan, and

    • hurdles, successes and much more.


    Kim Dupree Jones, RN, PhD, FNP is an associate professor in the Schools of Nursing and Medicine at Oregon Health & Science University (OHSU) in Portland. She earned her bachelor’s degree in nursing from the University of Tennessee, her master’s and nurse practitioner endorsement from Emory University, Atlanta, and her doctorate in exercise physiology from OHSU. Kim has also completed a post-doctoral degree in neuroendocrine physiology. She is an international speaker for patients, clinicians and researchers investigating fibromyalgia and maintains a clinical practice at OHSU in which she evaluates and treats people with fibromyalgia. Kim currently is the president of the Fibromyalgia Information Foundation (, a non-profit organization whose aim is to disseminate scientifically sound fibromyalgia data.

    Ashley Mahoney has been a volunteer advocate with the American Pain Foundation’s (APF) Action Network since its inception in 2006. Ashley was diagnosed as a college student with fibromyalgia and reflex sympathetic dystrophy in 2003. As a Georgia state leader for the Action Network, she works within the community as an activist for people living with pain. Ashley received her bachelor’s degree in communications from Reinhardt College, Waleska, Ga., and works in the insurance industry. She is a mother to a little boy and loves being a mom.

    Mark Maginn, MSW, ACSW, volunteers as a California state leader for the APF Action Network. As a pain advocate, he provides information to the public and works on policy issues that arise in state and national government. Mark knows pain intimately as he has lived with fibromyalgia and other pain conditions including osteoarthritis, Bechet's disease and microscopic colitis for more than 30 years. He previously worked as a psychotherapist and adjunct professor of psychology, focusing on post-traumatic stress disorder. Mark’s pain prevents him from continuing to work as a psychotherapist and teacher, so he now writes poetry and is working on a memoir of his experience with pain. He has recently accepted an appointment to APF’s Pain Community Advisory Council (PCAC) which serves to advise the APF Board of Directors, CEO and staff to insure that the programs, actions and positions are guided by and grounded in the experiences of people who live with pain.

    Carolyn Noel is APF’s project specialist working on fibromyalgia projects, the Military/Veterans Initiative and APF’s website. She is an APF Action Network state leader in Georgia and is a member of the steering committee of the Georgia Pain Initiative. Carolyn was diagnosed with fibromyalgia and other pain conditions including degenerative disc disease, six herniated discs, a traumatic brain injury, peripheral neuropathy, basilar artery migraines, sciatica and more following a 2002 car accident. She spent nearly five years in a wheelchair and is now walking again and shares her story of the many challenges and successes as a means of inspiration to others living with pain. Carolyn served for six years in the Marine Corps and advocates for her fellow veterans, military personnel and civilian pain patients alike, participating in numerous speaking engagements and media opportunities.

    Space is limited so please register today.  Please note that registration is a two-step process.

    • Visit the registration page to being the process. Complete the registration questions and click the “Register” button.

    • Check your email for a message from to confirm your registration. Be sure to check your junk or spam folders if you don’t receive the email.

    • After clicking the link in the confirmation email, you will receive a second email with links to access the webinar and a phone number to call at the scheduled day and time. Please make sure to run the system test before the webinar.

    If you need assistance with registering, please contact us at

    Thank you,
    American Pain Foundation

    This Webinar and email were  developed in collaboration with Pfizer.

    Monday, August 2, 2010

    August 2nd: 20 Years Today Since Iraqi Invasion of Kuwait

    PHOTO:  Iraqi tanks invade Kuwait, August 2, 1990.

    Written by Anthony Hardie,

    ( – Twenty years ago today, Iraq invaded its neighbor Kuwait over an oil dispute, paving the way for a U.S.-led international military coalition to expel Iraq from Kuwait and for two more decades of war in the region.

    In all, 696,842 U.S. troops served in the war, which was to begin five and a half months later on January 17, 1991 after months of diplomatic positioning, marking the beginning of Operation Desert Storm. 

    While Coalition war causalities “only” numbered in the hundreds – small numbers for a war, even a six-week war like the 1991 Gulf War, the lasting damage remains untold. 

    Of course, the Iraqi casualties were far, far higher – some estimates have ranged as high as 100,000 of more.  And, countless Kuwaiti military and civilians were killed during the Iraqi invasion and subsequent, nearly seven-month occupation.

    In an April 2010 scientific review, the Institute of Medicine, part of the U.S. National Academy of Sciences, found that 250,000 veterans of the 1991 Gulf War continue to suffer from debilitating, chronic multi-symptom illness.    While some have sought a “lone”, “unique” cause, the only real medical mystery following the Gulf War’s environmental toxic soup is why that every military service member didn’t become sick and disabled.

    Today, more than one-third of our veterans of the 1991 Gulf War remain chemically wounded and disabled from their military service.  Yet, there are no effective treatments for the resulting conditions brought on by overlapping toxic exposures that lead to an overlapping complex of multi-system symptoms  that in their totality range from significantly to totally disabling.

    But hope is genuinely and finally the mood of the day after last week’s Congressional hearing on Gulf War illness issues showed all parties aligned – Congress, VA, scientists, advisory committee leaders, veterans’ organizations, veterans – toward a common cause:  pushing scientific research to genuinely improve Gulf War veterans’ health and lives.

    Congressional, VA, and veterans’ organization leaders have never been in such agreement as was seen in last week’s hearing, notwithstanding the justified frustration expressed by the veterans who provided testimony to the Congressional oversight committee, noting the years of official denial and only limited, fragmented progress.

    Twenty years is clearly far too long to wait for appropriate healthcare to alleviate combat injuries. 

    But, better late than never – and Godspeed to Gulf War veterans’ allies in VA and Congress.