Blogging About Gulf War Illnesses: Neurological Issues and Treatments

Some of the best recent science has shown us that there may be common causes underlying the complex symptoms of Gulf War veterans’ illnesses, and those causes very likely involve the brain and neurological system.

Among the scientific studies that I have found to be particularly compelling have been those that suggest that various Gulf War exposures led to subtle brain and nervous system damage in Gulf War veterans, which, in turn, has led to dysfunctions of the autonomic nervous system, that controls such “automatic” bodily functions as the heart rate, breathing, digestion, salivation, perspiration, sexual functioning, and sleep regulation.

In short, many scientists now believe that Gulf War Illness is its own separately diagnosable condition, distinct from MS and lupus and even from nearby cousins fibromyalgia, chronic fatigue syndrome, and irritable bowel syndrome. Others still disagree. However, what’s important is that many scientists have found neurological symptoms in ill Gulf War veterans than can be treated and even if not completely reversed, at least mediated and made more bearable.

Recognizing Gulf War Illness as a separate and distinct neurological condition, caused by chemical damage to the brain and resulting in diverse neurological, autonomic nervous system, and immunological symptoms, is by far the most plausible and most comprehensive explanation I have seen in all the years I’ve been active on Gulf War illness issues. 

This article is divided into four parts after this introduction, including the probable damage caused by certain Gulf War exposures, neurological tests and symptoms, what works, and what to avoid.

Because this article is already so long, I plan to cover sleep, stress management, deep breathing, digestion and gut issues later in separate columns.  Your comments below this article are always welcome, particularly those about your own experiences of what works and what doesn’t.

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Part 1: Acetylcholine, Gulf War Exposures, and Brain Damage. I have found it to be of particular interest and plausibility in these theories that a brain and nervous system chemical called acetylcholine, a primary transmitter of nerve impulses in the autonomic nervous system, was and continues to be affected by one or more common Gulf War exposures.

Remember the little white pills so many of us Gulf War veterans took after the war began, the ones that we were told were experimental and unapproved by the FDA but which we were required to take anyway? Those Pyridostigmine Bromide (PB) pills we Gulf War veterans took were sometimes also called Nerve Agent Protective Pills, or NAPP’s. The primary purpose of constantly taking PB during the Gulf War was to disrupt the production of acetylcholine and improve our chances of survival after a nerve agent attack when used in combination with our 2-PAM chloride and atropine injectors that we carried everywhere as part of our basic uniform, right along with our protective gas masks.

However, without even discussing the long-term effects, taking the PB pills had immediate negative effects on many of us, and so much so that we remember them 20 years later. In my own hastily unit of 35 or so guys that constituted our hastily pulled together liaison team, roughly two-thirds or so of us showed or talked about negative side effects we were having from the PB pills while we were taking them, which we were told would mimic mild effects of nerve agent poisoning and which they did. Among those effects were: Runny nose; Watery eyes; vision changes; drooling and excessive sweating; cough; chest tightness; more rapid breathing; diarrhea; confusion; drowsiness and fatigue; weakness; headache; nausea, vomiting, and abdominal pain. Some of us had all the symptoms, some only a few, some were affected badly with substantial weight loss and being laid up on bed rest while others were affected only a little.

Meanwhile, a number of important scientific studies since the Gulf War have helped unravel the short- and long-term effects of PB pills, both alone and when taken in combination with being exposed to the military-strength pesticides that were so common among Gulf War troops. Those pesticides we Gulf War troops used as protection against sand flies, mosquitoes, and other biting insects, included permethrin, which was supposed to be sprayed on our uniforms to saturate them with insecticide but which we sometimes sprayed right onto our bodies as wells as our tents, sleeping bags, mosquito netting, and in our vehicles. It also included DEET, a commonly used insect repellant contained in “Off” insect sprays but which we Gulf War troops used in incredibly high concentrations all the time. Recent research has shown DEET to be an inhibitor of the key brain chemical acetylcholinesterase even on its own.

And, at least one scientific study has shown that while PB pills might improve survivability after an attack using Soman, one of the more common chemical warfare agents in the Gulf War era Iraqi arsenal, the use of PB actually heightens the negative health effects of Sarin, another common Iraqi chemical warfare agent to which an estimated 100,000 U.S. troops were exposed at low levels following the post-war demolition of chemical and other munitions at an Iraqi weapons storage depot at Khamisiyah, Iraq in March 1991. Soman, Sarin, and a close cousin of Sarin called Cyclosarin all also negatively impact the brain and nervous system, including affecting the production and reception of acetylcholine in the autonomic nervous system.

What is also significant is the result of studies that have shown that while PB does not normally cross the brain-blood barrier, stress can allow it to cross over into the brain with short- and long-term effects that are only in the early stages of being discovered.

To show how seriously many in the scientific research world are now taking this PB and PB-pesticide connection to Gulf War veterans’ illnesses, a 2008 U.S. government report by the Congressionally-chartered Research Advisory Committee on Gulf War Veterans’ Illnesses shook the scientific world when it identified PB-pesticides as the leading probable cause for most Gulf War veterans’ chronic multi-symptom illness – though the report did not rule out a number of other hazardous exposures as having caused other conditions prevalent or potentially prevalent among Gulf War veterans.  The panel is composed of some of the top scientists in their fields from the U.S. and UK, including a former elected head of the American Association for the Advancement of Science, the head of neuro-toxicology for the U.S. Centers for Disease Control (CDC), the head of the UK’s center for chemical warfare research, and many others.   In short, these are not scientific lightweights, off-beats, or self-serving quacks by any stretch of the imagination -- which have all too often been the scourge of the Gulf War veteran community.  The collective opinion of these leading scientists, rooted in countless scientific studies, represented a true and major breakthrough for Gulf War veterans suffering from Gulf War Illness. 

Of interest to Gulf War era troops who did not deploy, these highly concentrated pesticides have more recently been shown to be dangerous were used commonly throughout the military at the time. This fact might help explain why some non-deployed Gulf War ere troops report long-term symptoms similar to some Gulf War veterans.

The damage caused by these acetylcholinesterase inhibiting agents is only just beginning to be understood by science. I’m most encouraged by many of the scientists involved who suggest that this new understanding may very well lead to treatments that might help.

 

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Part 2: Neurological tests and Symptoms. Meanwhile, here are some of the neurological effects I’ve experienced since the Gulf War, whatever the cause, that are common to many of us Gulf War veterans.

· Chronic, debilitating fatigue. This was one of the earliest symptoms, which began while I was still in the Gulf and was first taking the PB pills. However, we had a lot of exposures during the Gulf so accurately attributing the overwhelming fatigue to any one or any set of them is difficult. Chronic Fatigue Syndrome (CFS) is another presumptive condition for Gulf War veterans. Like so many other Gulf War veterans, the fatigue is overwhelming to the point of being all-encompassing and is impossible to overcome. Fatigue is difficult to measure, but there are a number of fatigue scales that can be used.  Some scientists and medical doctors believe that the chronic, debilitating fatigue in Gulf War Illness is separate and distinct from CFS, and a number of current studies will try to tease that distinction out as part of their various aims.  And in the last year, a virus called XMRV has been identified in people with CFS which might be the cause of their chronic fatigue symptoms.  If any of this turns out to be true, then treatment for Gulf War veterans might be  the same or different than for those with CFS. 

· Chronic muscle and joint weakness. This has been getting progressively worse over time. After the Gulf War, even though I was only in my early- to mid-20’s, I began experiencing my knees and legs just giving out. Muscle and joint weakness are commonly reported symptom among Gulf War veterans with chronic multi-symptom illness, as well as in veterans in general, and this is one area that’s harder to tease out from the long-term symptoms of excessive wear and tear on our joints and muscles from our military experiences.   Over time, I’ve had more and more difficulty with walking, a commonly reported neurological or arthritis-based complaint among many Gulf War veterans.

· Chronic widespread pain. In many Gulf War veterans, our chronic widespread pain has been given the diagnosis of Fibromyalgia, which is a presumptive condition for service-connection for us Gulf War veterans. For me, this is in the muscles, tendons, joints, and spine. Fibromyalgia has traditionally been diagnosed through a pressure-point diagnosis system that is still being used by the VA in its diagnostic tests for determining service-connection. However, a newer system is being used in some areas that involves a pain index along with measuring other fibromyalgia syndrome symptoms like fatigue, cognitive symptoms, and psychological symptoms.   

Like with CFS, some scientists and medical doctors believe that the chronic widespread pain in Gulf War Illness is separate and distinct from fibromyalgia, and a number of current studies will try to tease that distinction out as part of their various aims.  If this is true, then treatment for Gulf War veterans’ chronic widespread pain might be different than for those with fibromyalgia.  Time will tell in these scientific debates.

· Paresthesias/Dysthesias. These classic neurological symptoms involve unpleasant, painful, or other highly unnatural-feeling sensations in the skin and various parts of the body. For me, they range from buzzing and unpleasant tingly/buzzing feelings, feelings of vibration, pinching and needle-poking symptoms, to small, repeated twitching. At its worst, they feel like deep burning hot, freezing cold, and a feeling of the affected area being unpleasantly wet – all impossibly at the same time.

While other ill Gulf War veterans have told me about getting these in virtually every part of the body, for me, my Paresthesias are most often in my feet and legs.  In my legs, it starts off as tingling, buzzing, and twitching that becomes increasingly painful.  I also often get aching feet that quickly progresses to burning and feeling like I’m stepping on hundreds of sharp nail points. I often get paresthesias up and down my spine and neck, which begin as strong tingling and progress to pain, sometimes they even go up over the top of my head. One of the strangest feelings is when I get these inside the right side of my abdomen, where it feels exactly like my cell phone is vibrating, only it goes on for minutes or hours.   These sensations feel very abnormal, and are often very difficult to describe.

Some Gulf War veterans have told me about getting these neurological symptoms even in their face and eyes. In my case, my doctors attribute these classic neurological symptoms to fibromyalgia and Gulf War Illness, though they’re also common symptoms in Multiple Sclerosis (MS), Lupus, neurological damage caused by Diabetes, and a host of other neurological diseases. Very little study has been devoted to Paresthesias/dysthesias in Gulf War veterans, though my own experience suggests that this is more of a newly emerging issue in us Gulf War veterans and part of the progression of the underlying issues, and hopefully we’ll see more treatment-focused research aimed in this direction in the next year or two.

· Neuropathies. These are nerve-related pain. For me, I get them most in my legs and feet, sometimes with Paresthesias/dysthesias, sometimes alone, but I know other Gulf War veterans that get them in their hands, arms, face, and elsewhere. Neuropathy is common in MS, Lupus, Diabetes, and many other neurological diseases.   My father is a diabetic who gets neuropathies in his legs that are so severe he cannot sleep, and this is also reportedly common among Gulf War veterans.

· Comprehensive neurological testing. I found it very important to have a complete battery of comprehensive neurological testing to rule out other neurological diseases. These included an Electromyogram and nerve-conduction studies (EMG/NCS), a battery of in-office basic neurological tests, an MRI of the brain, an EEG, neuropsychiatric tests to measure memory, cognitive abilities, mood and emotional dysfunctions, and many others. Read more these and neurological testing here: http://www.ninds.nih.gov/disorders/misc/diagnostic_tests.htm

· Small Fiber Peripheral Neuropathy (SFPN).  Many of the standard neurological tests are looking at neurological symptoms and conditions in the most broad-brush sort of way.  I know a lot of Gulf War veterans who have grown upset over the years because a neurologist has not been able to diagnose or find a cause for the apparently neurological symptoms they’re reporting.  A new study is currently focusing on the possibility of a condition called Small Fiber Peripheral Neuropathy in Gulf War veterans with Gulf War Illness symptoms, which cannot be diagnosed by the older, more traditional neurological tests like EMG’s and NCS’s because they’re simply not sophisticated enough.   If SFPN is found to be an issue, this could quickly lead to new treatment possibilities for Gulf War veterans.   Typical symptoms include burning feet and numb toes.

· Vision changes. While I have only had limited vision symptoms, many of my ill Gulf War veteran friends report eye pain, double vision, blurred vision, and other color and vision changes that wax and wane. Some of these Gulf War veterans have been diagnosed with MS, while others have not.

· Dizziness. This is a commonly reported symptom among Gulf War veterans. It’s also very hard to diagnose or measure. This is also a common symptom in veterans with mild and other Traumatic Brain Injury (TBI) caused by head injuries, blast waves, and other concussions.  It’s important for a good doctor to do a thorough review, including a detailed medical history that includes when the dizziness began, because dizziness can be a symptom with many possible causes, some of them life-threatening.  Most important is whether the dizziness waxes and wanes, stays the same, or has been getting progressively worse with no relief. 

· Heat Intolerance.   Like people with MS, I’m a Gulf War veteran without MS who has developed heat intolerance.  Just like people with MS, heat – including from a hot day, a hot shower or bath, a hot tub or sauna, or even a hot kitchen  – makes my other symptoms flare almost instantly, including fatigue, weakness, dizziness, cognitive issues and visual symptoms.  

· Headaches. I’ve been fortunate to not have headaches, a common symptom reported by many Gulf War veterans, since my sinus surgeries in the mid-1990s. I sometimes wonder how many of my fellow Gulf War veterans’ headaches could be attributed to untreated and possibly unknown sinus problems as well. At least one Gulf War Illness researcher continues to look at migraines in Gulf War veterans.

· Brain/Spinal Cord lesions. Many Gulf War veterans have told me about having had lesions found on their brain and/or spinal cord after an MRI. Some are diagnosed with MS, while others are not. Some have told me that their doctors call the lesions atypical for MS and are unexplained. There has been a good bit of discussion among ill Gulf War veterans about deterioration of the myelin sheath surrounding nerves as a possible cause for some of Gulf War veterans’ neurological symptoms, similar to the dramatic demyelination in MS.

· CSF changes. Certain changes in the cerebral-spinal fluid (CSF) that surrounds the brain and spinal cord are used to confirm the diagnosis of MS and other neurological diseases. A sample of CSF is drawn via a spinal tap. Many studies have found an increase of a particular chemical believe to be related to pain sensation, called Substance P, in the CSF of people with Fibromyalgia.

For me, I have unusually high protein levels in my CSF, which is consistent with my neurological symptoms, but doesn’t really help to guide any specific form of treatment, at least not yet, anyways. A study currently ongoing at Georgetown University in Washington, DC may help shed more light on abnormalities in ill Gulf War veterans’ CSF and has the potential of helping to provide another objective diagnostic criteria that might also one day be used to measure the severity or progression of the underlying issues.

· Blood Abnormalities. Some neurological diseases show certain abnormalities that can be identified by specific testing of blood samples. Neurology and Immunology can both help in these areas, though getting more exotic testing done can be difficult to impossible within the VA system due to budget and formulary constraints.

· Cognitive issues. These were some of the earliest symptoms reported by ill Gulf War veterans, including memory loss, confusion, excessive or even debilitating forgetfulness, decreased ability to learn or retain information, difficulties with words and speaking, new onset difficulties with reading, and other related cognitive issues. Like many Gulf War veterans, I’ve experienced many of these, too. These issues are also common symptoms of PTSD, a common war trauma disorder, and mild and other Traumatic Brain Injury (TBI and mTBI).

· Mood Issues. Symptoms like depression and anxiety are common in many debilitating diseases, but especially in brain and neurological disorders. Mood swings, excessive irritability, and mental lethargy can also be symptoms. Many of these are also symptoms in PTSD, which affects many veterans, and in TBI/mTBI, another form of brain injury. Effective treatment of these is critical, though working with a doctor to find medications that work and also have tolerable side effects can be a challenge spanning several years.

While some veterans I know are concerned about the supposed stigma of being seen or treated for these issues, it should come as no surprise to anyone thatp people with neurological damage of any kind are at increased risk of also having mood symptoms, since most mood controls reside in the brain and neurological system that in many Gulf War veterans is likely damaged.

· Sexual Function Issues.  Much of the body’s sexual functioning is controlled by the parts of the brain believed to be damaged in Gulf War veterans.  Sexual function can also be negatively impacted by other forms of brain injury, and by PTSD, depression, and anxiety, all of which are prevalent in military veterans.   Issues related to the several aspects of sexual function are an important but little discussed aspect of Gulf War Illness, the impact of which obviously differs between male and female Gulf War veterans.   For many Gulf War veterans and their families, these symptoms have had a profound impact on conception, and childbearing, relationship health, and quality of life.  In the early years after the Gulf War, “burning semen syndrome” and birth defects were two areas that were widely discussed and derided in the stress-bent military establishment, but there was little serious scientific or medical attention given to these issues.   Despite the highly private and sensitive nature of these issues, perhaps the future will hold more focused research targeted  to these areas.

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Part 3: Neurological Symptoms -- Things that help. Here are some of the things I do that seem to help my own neurological symptoms.

· Sleep. Getting good quality sleep for Gulf War veterans, particularly for those of us also suffering from PTSD, can be nearly impossible, and I intend to dedicate a column just on sleep alone. In summary, however, a combination of sleep hygiene techniques, deep breathing exercises discussed below, stress management (also to be the subject of another column), sleep medications, and control of sleep apnea symptoms are all key.

· Medications. There are many medication choices for neurological pain and neurological symptoms like Paresthesias/dysthesias, neuropathies, and other neurological symptoms. These range from drugs like Lyrica, which is specifically approved to fibromyalgia pain and in my experience really does help relieve the worst Paresthesias, to narcotics and opiods like oxycodone, oxycontin, vicodin and other medication specifically for pain.

As surprising as what it might seem, some anti-depressants, anti-seizure medication used in conditions like epilepsy, muscle relaxants, and anti-anxiety mediations can be helpful in treating the wide array of neurological symptoms and underlying issues.

While I have never tried Amitriptyline (Elavil) this is another commonly prescribed first-line drug for neuropathic pain.  I’ve heard mixed reports from other Gulf War veterans and fibromyalgia sufferers, helping some and not helping others.  It’s often necessary for VA doctors to try prescribing these sorts of drugs first before progressing to more expensive drugs like Lyrica if the first- and second-line drugs don’t work. 

Gabapentin (Neurontin) is an anti-seizure drug that is often prescribed for neuropathic pain, especially if amytriptaline isn’t effective.  I found it did not relieve my paresthesias, though it did help with the neuropathies. 

Lyrica (Pregabalin) is the general favorite of four drugs now FDA-approved for the treatment of fibromyalgia.    While Gabapentin works on the brain’s GABA-receptors, Pregabalin, like the names sounds, works at a level prior to that.   

Other FDA-approved drugs for fibromyalgia include Cymbalta (Duloxetine) and Savella (milnacipran), two drugs which cannot be taken in combination with some other anti-depressant type medications.   Cymbalta is also FDA-approved for treating depression and diabetic peripheral neuropathy. 

I’ve also found that analgesics like prescription strength Ibuprofen (Motrin) helps with some of the muscle pain (but not the nerve pain). For me, I have found a combination of these helpful, though I personally try to avoid narcotics and opioids. However, that’s a very personal choice made based on my own weighing of the Faustian trade-offs of leaving the symptoms untreated versus experiencing the unavoidable side-effects of those types of medications. Many other Gulf War veterans need to rely heavily on these kinds of pain medications. In fact, pretty much all neurological drugs are going to have side-effects, some of which may be worse than the symptom you’re trying to have treated.

I have found neurology and rheumatology to be most helpful in diagnosing and treating my own pain, Paresthesias/dysthesias, and other neurological issues.

Here’s a really good PowerPoint overview of neurological drugs: http://cstl-hhs.semo.edu/ham/ns270-01/protected/NS%20270%20Neurologic%20Drugs.ppt

Modafanil (Provigil) is commonly prescribed for fatigue issues.  I don’t like it, just like I don’t like caffeine, because they both make me work past my fatigue limits and lead to sever flare-ups in my pain and other symptoms,  but others’ experiences may be different, of course. 

· Treatments for cognitive symptoms vary from psychological adaptation and learning to do things differently to sort of “bypass” the damaged areas of the brain, to medications, neutraceuticals and supplements, to strategies and tools to help with memory like a smart phone (iPhone, Blackberry, etc.) or personal digital assistant (PDA, like Palm Pilots, iPods, iPads, etc.). It’s important to learn that no matter what the cause is for brain damage, we’re very resilient and can do a lot to adapt. While it’s hard, we can learn new ways of doing things to help us get by, much like an amputee gets by with a new prosthetic limb.

I rely on my smart phone for sounding off to remind me of things I need to do, and my iPad for my calendar and daybook that also beeps and makes other sounds to let me know of upcoming appointments and other scheduled activities. Having a family member keep track of appointments is also helpful, and something that we do in my family so I don’t miss them.

· Cognitive support. In addition to reading and writing to keep my mind active, I really like Ginkgo Biloba, an over the counter neutraceutical herbal supplement that seems to have only one effect – improving my mental clarity – with no apparent side effects. I take two standard capsules every morning as part of my daily regimen, and while the improvement is subtle, it is noticeable. I order mine online at less than $3/bottle: http://www.swansonvitamins.com/mobile/itemdetail/SW1106.html.

· Treatment for Mood Issues. Common symptoms in neurological and other diseases, like depression and anxiety, mood swings, excessive irritability, and mental lethargy, need to be treated. Effective treatment of these is critical, though working with a doctor to find medications that work and also have tolerable side effects can be a challenge spanning several years. There is no shame in getting this kind of treatment, any more than there is any shame in getting pain medication for pain, heart medication for heart disease, or inhalers for lung and sinus disease. And, as I already noted above, many of these treatments are also known to affect pain receptors in the brain and are specifically prescribed to reduce pain and other neurological symptoms, meaning multiple benefits in the same treatment!  

For example, Celexa (Citalopram) has been shown to be effective in relieving symptoms of depression, PTSD, and is also prescribed off-label for chronic widespread pain.   I’ve had good success with it. 

· Exercise, even moderate, helps the chronic widespread pain. However, for me and many other Gulf War veterans, this is sort of a Catch-22 because the exercise also often dramatically worsens the debilitating fatigue. A powerful recent study showed that Tai Chi helps with managing chronic fibromyalgia pain.

· Walking Support.  A lot of Gulf War veterans I know have difficultly with mobility.  Some have been diagnosed with MS, while most of the rest of us have not.  While it can be a bit of a pride issue, using the cane prescribed by my doctor really does help with mobility and in countering the gradually progressing weakness in my legs and back.   Add in the degenerative arthritic issues in my knees and spinal column, and having walking support is critical.  Using a shopping cart for support when in large stores is also very helpful.   While I spent the better part of a year at Walter Reed Army Medical Center recovering from a non-combat military injury leg surgery, I learned that it’s most effective to use a cane on the opposite side of the weakest one, and having the can high enough so you can stand straight up without leaning are both key. 

· Deep Breathing. I’ll do a separate article on this one, but if you want to get a head starte, here’s a good article on deep breathing exercises: http://www.drweil.com/drw/u/ART00521/three-breathing-exercises.html

· Stress Management. Just the word “stress” has become a trigger point and dirty word for many Gulf War veterans because of the federal government’s insistence over many of the early years after the Gulf War that “all” that was wrong with Gulf War veterans was “stress” -- and that we just needed to forget about it, get over it, and get past it. (One VA doctor, my local VA Gulf War specialist, actually told me and other Gulf War veterans those words in 1996). However, managing stress and our reactions to it is a key part of dealing with any serious and debilitating disease like Gulf War Illness, fibromyalgia, chronic fatigue syndrome, MS, and so on. I plan a separate column on stress management for ill Gulf War veterans, including its importance and some “how-to’s”.

· Laying flat on your back. Strange as it may sound, this can really help with quelling the worst of the symptoms. Sometimes, even sitting up can make symptoms worse. Laying flat on my back, or laying flat with my knees up, really seems to help. I’ve found the real versatility of a laptop, and in fact, I’m writing this from my laptop while flat on my back. I don’t know whether this helps anyone else, or if anyone else can feel a difference from sitting up versus laying down, but it works for me so maybe it works for someone else, too.

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Part 4: Neurological Symptoms and Things to avoid. Here are some of the things I avoid in order to not make my neurological symptoms worse, or keep the worst of them at bay.

• · Head and Neck Injuries.   I’ve found that many of my symptoms have dramatically worsened each time I’ve had an additional head or neck injury.  While probably no one really tries to get a head or neck injury, avoiding situations that put you at higher risk might be a good choice. 
• · Avoid certain chemicals. Like many Gulf War veterans, I became highly chemically sensitive while still in the Gulf. From paints and paint thinners to pesticides, detergents, and almost any sort of chemical fume, I’ve learned to avoid them to prevent immediate worsening of my symptoms. I’m interested in what others have learned to avoid – put it as a comment below!
• · Avoid certain food additives. I’ve found that caffeine makes me worse even in very small amounts (a few sips of coffee or a caffeinated soda), which like for everyone first boosts my energy, but then crashing down into a serious and debilitating fatigue episode that can last as long as 24 hours or more. I also avoid aspartame (Nutrasweet), found in diet sodas, powdered diet drinks, chewing gum, and many other products, since it has made me feel unpleasantly light-headed in even very small quantities. By paying attention to how I feel after I consume anything, this helps.
• · Overexertion. For me, balancing has been key. A balance between a little moderate exercise (a walk of a few blocks, walking while doing some light shopping) and getting a LOT of rest is critical.
• · Stress. I can’t say enough about how important it has been, especially in more recent years, to keep all stress away to keep the worst of the symptoms at bay. This includes both physical strain and mental or emotional stress.
• · Driving. I have found that the constant, subtle jostling while driving or riding in a car makes my neurological symptoms worse. Flying isn’t quite as bad. In addition to becoming highly fatigue, sometimes even short, in-town driving/riding can bring on the worst of the neurological symptoms.

Blogging about Gulf War Illnesses: Respiratory and Sinus Issues

Written by Anthony Hardie

(91outcomes.com) – Today’s post is the first in a planned series about the health issues I’ve  experienced since the 1991 Gulf War, treatments I’ve tried, and what has worked best for me.    I’ll be discussing just respiratory and sinus symptoms in this post, with neurological and neuropsychological, immunological, eye, skin, gastrointestinal, sleep and other issues in later posts.

I hope that some of this turns out to be useful to other Gulf War veterans who are also suffering.   If any of this sounds helpful, of course feel free to discuss any of this with your own doctors.

Please also consider sharing your own experiences as a comment below this article.

RESPIRATORY ISSUES

Chronic cough.  Most notably, I’ve had a chronic cough that began while I was still in the Gulf.  Because I smelled the characteristic odors of geraniums and onions while going through an Iraqi bunker complex north of Kuwait City in the last days of the war, and the severe respiratory symptoms I developed later that night that included coughing up what appeared to be lung tissue, I believe my resultant chronic cough – which has never gone away – is the result of an exposure to a mustard-lewisite chemical warfare agent mix.

I won’t go into all the details here, though if you’re really interested you can read more about why I believe this to be true, and why that I believe that only two or possibly three of us were exposed in this particular bunker complex in my July 2009 Congressional testimony.    I also believe that I’m not alone, and that at least some other Gulf War veterans have respiratory issues linked to mustard or mustard-lewisite exposures during and after the war.

After the initial, very bad lung symptoms, which began a number of hours after the probable exposure and worsened over the next couple to few days, I continued to cough something terrible, like the worst chest cold I could ever have imagined, coughing up stringy strands and what appeared to be small chunks of tissue.  Later, I would cough up black sputum, still sometimes with what appeared to be tissue and thick, solid, but soft gunk, for the last two months I was in the Gulf region and another month after I returned home, laying on the end of my cot or bed and just coughing and coughing up the blackish gunk.

Like some other Gulf War veterans, my cough has never subsided, and ranges from barking, to almost a whistling sort of sound, to productive with lots of mucous.

Not asthma.  Just like I have heard from many other Gulf War veterans, the VA refused to do any more expensive diagnostic testing like what was done at the private-sector hospital.  VA doctors continued to hold to a mistaken diagnosis of asthma even though I continually denied having typical asthma symptoms.  I now believe that the “asthma” diagnosis at VA continued simply because some doctor years ago wrongly assumed asthma was the cause, and the label stuck. 

Tests at the private-sector hospital, paid for by me and my own private health insurance, definitively ruled out asthma, which was no surprise to me since I have never had the typical symptoms of asthma such as the wheezing or the chest tightness I have witnessed in one of my sons who has severe asthma. 

So, when I finally had a bronchoscopy and other tests last year at a private medical facility, I was diagnosed with a form of Chronic Obstructive Pulmonary Disease (COPD) called chronic bronchitis. 

A bronchoscopy is a fairly unpleasant and uncomfortable, invasive, but very useful diagnostic test in which a tube is inserted down into the larger airways of the upper lungs so the doctor can look at the upper airway tubes and tissues, as well as possibly taking fluid or tissue samples. 

Interestingly, published scientific studies of a monitored cohort of thousands of Iranian veterans who survived mustard gas attacks during the Iran-Iraq War -- which ended just three years before “our” 1991 Persian Gulf War – show very high rates of chronic bronchitis, at well over 90 percent. 

Associated Symptoms.  In addition to the chronic cough that brings up mucous, I also get short of breath after even mild exercise like going up a few stairs or walking from the parking lot into a store, so I’m pretty limited.  

In fact, as a fairly serious long distance runner, one of my earliest symptoms was how I felt during and after running. 

Prior to the Gulf War, running was a huge part of my life, centering and energizing me for hours or even all day after a good daily run of at least three or five miles on a few days a week to up to seven, ten, or twelve miles on as many days of the week as I had time to do so.  After I returned from the Gulf, I had intense coughing spells during and immediately after running – a brand new symptoms –that were sometimes so severe I had to stop to cough, often coughing so hard I retched or vomited, then started back up and kept on running. 

Other typical COPD/chronic bronchitis symptoms I have include severe and debilitating fatigue and weakness, though I recognize these can just as easily be caused by the neurological issues I also have, just like many other Gulf War veterans.  Completely opposite from the feelings I got from running before deploying to the Gulf, including feeling energized, glowing, and  just having a wonderful feeling of general well-being, after my return from the Gulf I found myself incredibly exhausted after running.  That exhaustion worsened over time, and within three years of returning from the Gulf, the intense  exhaustion I got would last for 24 hours or longer.  I just kept trying to run harder, but would have to cut my runs short (three or four miles instead of seven or ten), and then would be so depleted when I got home I often felt an intense need to go to sleep, then would sleep for 15, 20, or even 24 hours or longer.

I should add that I turned age 23 in the middle Gulf War, was only 25 when I completed my military service, and turned 26 during my first semester in college when I was learning the hard way that I could no longer go running on days when I had anything else I needed to do.   What I mean by this is that I wasn’t some elderly person, I was used to being a health, extremely fit special operations warrior and very in tune with my body.

Like many people with chronic bronchitis/COPD, my cough is usually worst when I first get up from bed, and in damp and humid weather.

With chronic bronchitis/COPD, I also have to be very careful with acute lung infections and flare-ups, to which I seem to be quite prone, now, and they can very quickly feel like they’re getting out of control.  I haven’t had to be hospitalized for the COPD/chronic bronchitis like many others have, but when things flare-up and my lungs start to feel like their filling up with mucous and fluid, it can get pretty hard to breathe right, the exhaustion is even more intense, and I just sleep and sleep.

I also get fevers and night sweats on occasion, as well as facial flushing that feels hot both to me and to the touch and looks like sunburn (I’m Caucasian and very fair skinned), which are both common symptoms of chronic bronchitis (as well as a lot of other things, including adrenal gland or immune system issues).

What helps.  Here’s what I do that helps with my respiratory issues, and maybe will help others, too:

• First and foremost, do not smoke!
• Take long, very steamy showers to cough up and out all the mucous.  This is one of the most helpful things I do, and while it’s exhausting to cough so much, it feels better after everything is coughed out and feels cleared out.
• Take Mucinex (also available over the counter) to help dry up the mucous when the symptoms are more severe.
• Ensure my chronic sinusitis symptoms are well controlled (more on that later), including using Nasonex and other nasal inhalers
• Ensure my Gastro-Esophageal Reflux Disease (GERD) symptoms are well controlled (more on that later, too).
• Based on a doctor’s recommendation, I made sure when I moved that I found a home that had boiler/radiator heat and hardwood floors.  I’ve learned that carpeting, forced air, and air ducts all  retain and distribute dust, molds, pollens and other allergens and can make my symptoms worse very quickly.
• Avoid dust, smoke, and aerosol sprays.
• Use hypo-allergenic pillows, pillow covers, and mattress covers (VA allergists can prescribe these to be provided at no cost or for just a small copay).
• Use an allergy approved vacuum cleaner, including on the hardwood floors.
• Keep the filters in my window air-conditioning units clean.  I have found that staying in some hotels with even slightly damp or musty smelling air-conditioning during the summer months can cause an overnight flare-up in my respiratory symptoms.
• At the first sign of a flare-up, I take large doses (1000 mg, twice a day) of Vitamin C, zinc, and echinacea. 
• I don’t hesitate to go to my primary care doctor for antibiotics as soon as it looks like I have a full-fledged sinus infection, which usually seems to move into my lungs within just a few days at most and can get pretty bad pretty quickly.
• It’s very important to have a good pulmonologist, and to get regular check-ups.  Now that my respiratory symptoms seem to be relatively stable, I go at least once a year, and see my primary care physician for antibiotics when necessary and other more frequent care and monitoring.  I get an annual lung X-ray to ensure there’s nothing new going on.  An initial MRI and CT scan were helpful in making the diagnosis, as well as lots of breathing tests.

Steroids.  I’ve tried inhaled steroids, which are thought to perhaps help slow the progression of COPD/chronic bronchitis.  After several months of use, I didn’t feel much difference and stopped taking them. 

Oxygen.  Though I haven’t had to go on oxygen yet, I understand that COPD/chronic bronchitis has little hope of improving and often worsens and oxygen therapy is frequently needed.

SINUS ISSUES

To the best of my knowledge, I never had even one sinus infection before my Gulf War service, but I’ve had them chronically ever since.   

And, when I’ve asked service officers at some of the conferences at which I’ve spoken about any conditions they’ve seen being claimed by veterans of the 1991 Gulf War that seem different than from earlier wars, I’ve been told repeatedly about Gulf War veterans’ sinus issues.  So, it seems like I’m not alone.

A full blown sinus infection can be miserable, with pressure, pain, or numbness going up into your eyes, in your cheeks, down into your teeth, and of course into your nose. 

For me, I often also get aching back teeth on one or both sides of my mouth when I have a sinus infection. 

Fever, malaise, drowsiness, fatigue, blurry or double vision, watery eyes, and even nausea can be part of the package. 

Left untreated, the infection can spread, including into other parts of the respiratory tract.    For people like me with already impeded lung function, an active sinus infection can require very careful monitoring to prevent even worse outcomes.

What helps.    Here’s what’s helped for me.  Again, what works for me might work for you, or it might not. 

• Sinus surgery.  I’ve had two surgeries to help  -- both at VA medical centers -- including one that removed the bones and mucous membranes between the sinuses to help them drain.  While pretty unpleasant, the surgeries were extremely helpful, and now I’m able to get much of the infection out.  Since the surgery, tipping my head upside down while standing or sitting especially helps to blow everything out. 
• A good sinus steroid spray.  I currently use Nasonex,  a water-based spray which is available in the current VA formulary, though I have also used a few others with similar outcomes.  VA initially prescribed an alcohol-based spray that was very painful to use on inflamed mucous membrane tissues and like something from the medieval ages.  After just a few days of trying it, I protested and got something better.  Knowing what I know now, I would simply refuse any alcohol-based nasal spray.  You’ll need a prescription for these.
• Xlear.   I have the good fortune of having one of the world’s leading researchers on sinus and nasal irrigation as my primary care physician, and he’s currently doing studies on this xylitol-based saline spray as a very helpful treatment for sinus infections.  He says it’s used a lot in Europe already, and he’s working to help get it accepted here in the U.S.  Xylitol is a sweetener and it feels like this xylitol-based spray sticks to the mucous in my sinuses and nose and loosens things up, which in turn seems to helps me to clear it out within just a few minutes of using it. Xlear is available over the counter.  I’ve gotten mine in the past from Walgreen’s, though it’s available for about half the retail price from www.swansonvitamins.com. 
• Take long, very steamy showers to loosen up and blow out all the mucous and gunk.  This is one of the most helpful things I do for both my lungs and sinuses, with of course are interrelated.
• Many of the same things that help with my lungs help here, like the avoiding and allergy-related ones.
• For sinus infections that don’t clear up after a few days, or just seem to keep on getting worse, my doctor prescribes me a good antibiotic, which kills the bacterial infection.  I often get Augmentin (Amoxicillin Clavulanate) for 10 or 14 days, though I’ve had better success with Ceftin, Cipro, and other antibiotics.  I always make sure to take a probiotic while taking heavy-duty or longer term antibiotics to help restore the “good” bacteria in the gut, which make up by far the largest part of the body’s immune system but which are unfortunately also destroyed along with the “bad” bacteria by antibiotics.   Note that sinus infections can also be viral or fungal, and treatments are different for those.
• Get a check-up every year or two from an Ear-Nose-Throat (ENT) specialist.  While having a steel rod fiber optic scope thrust up into your sinus cavity through your nose isn’t the most pleasant of experiences, it’s good to monitor up inside to be sure of no new negative developments. 
• While I haven’t tried this yet, I recently had a recommendation from an ENT doctor to try prednisone, an oral cortico-steroid for more quick relief, with or without antibiotics at the same time.

Again, I hope that by putting this fairly personal information out there, it might help other Gulf War veterans who have similar issues.  And as I mentioned earlier, while this post was only about respiratory and sinus symptoms, I’m planning on more posts that will cover neurological and neuropsychological, immunological, eye, skin, gastrointestinal, sleep and other issues in later posts.

And again, feel free to discuss your own experiences by leaving a comment below.

-Anthony Hardie, writing from Madison, Wis.

Blogging about Gulf War illnesses

Written by Anthony Hardie

(91outcomes.com) – As a disabled Gulf War veteran myself, I’m going to try something new for 91outcomes.com – blogging in the first person about my own experiences related to Gulf War illnesses, the various treatments I’ve tried, about which I’ve read studies for or against, what seems to help, and what seems to make things worse.

Please take what I write with a grain of salt.  While I’m well read and active in the Gulf War illnesses scientific research community, I remain a lay person who is neither a medical doctor nor a Ph.D. 

That said, here goes.  And for the readers of 91outcomes, your feedback is most welcome.

============

It seems like discussions among most of us veterans of the 1991 Gulf War who have had health issues ever since 1991 revolve around a few main topics: 

• Exposures during the Gulf war, including those that are known, probable and possible
• Symptoms we have experienced ever since;
• Diagnosed health conditions that we now have and that we believe are related in one way or another to our Gulf War service (whether they really are or not);
• Treatments that we have tried, including those that help with one or more symptoms, those that didn’t work or made things worse, and those that seemed to help for a while and then suddenly didn’t anymore; and
• What the future might hold for us, health-wise.

Sound familiar?  I know I’ve had these conversations many times over the years.

I’ll try to talk a little about each of these in the upcoming weeks, and what I’ve learned either for myself (“anecdotally”) or from peer-reviewed scientific research studies. 

And please, feel free to comment and let me know what you think, or if you’ve had experiences of your own that are similar or different than mine. 

From here and over the next few weeks, I guess we’ll see how this experiment progresses.   

Thanks!

-Anthony

Senate Defense Subcommittee Continues, Shortchanges Gulf War Illness Research Program

Action Needed Immediately to Increase Funding for Critical, Unparalleled Program

Written by Anthony Hardie

(91outcomes.com) – In surprising news today,  while taking action that would continue the unparalleled research program, the U.S. Senate Subcommittee on Defense Appropriations has short-changed the acclaimed Gulf War Illness Research Program.

While the House version called for more than twice as much, the Senate Subcommittee’s version would appropriate only $8 million for DoD’s Gulf War Illness Research Program.   

The Subcommittee is chaired by Sen. Daniel Inouye (D-Hawaii), who also chairs the full Senate Appropriations Committee.   The Subcommittee’s Ranking Republican is Sen. Thad Cochran (R-Miss.).

The program has been funded and managed since 2006 by DoD’ s Congressionally Directed Medical Research Program (CDMRP) at Ft. Detrick, Maryland, earning praise from scientists and veterans alike.

Gulf War Illness, also known as Gulf War Syndrome or Gulf War veterans’ illness research was funded far lower than any other research program, which included $150 million for breast cancer research and $80 million for prostate cancer research.

In another surprising move, ALS (Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s Disease) and MS (Multiple Sclerosis) research would be discontinued under the Subcommittee’s proposal. 

Meanwhile, destruction of chemical warfare munitions earned a $1.5 billion recommendation.

Title VI – Other Department of Defense Programs $34.5 billion

Defense Health Programs $31.5 billion

• $595 million above the President’s budget request
• $240 million for cancer research. The total amount is distributed as follows:
• $150 million for the Breast Cancer Research Program
• $80 million for the Prostate Cancer Research Program
• $10 million for the Ovarian Cancer Research Program
• $60 million for the Peer Reviewed Psychological Health and Traumatic Brain Injury Research Program
• $50 million for a medical research program
• A paltry $8 million for the Peer Reviewed Gulf War Illness Research Program

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Gulf War veterans and interested supporters should immediately contact their Senators, especially members of the Senate Appropriations Committee, to demand that the Gulf War Illness Research Program funding be increased to at least $25 million, and to restore funding to the ALS and MS research programs.

More about the programs:  http://cdmrp.army.mil/researchprograms.shtml 

Senate Defense Appropriations Committee Members

Democratic Members

DANIEL K. INOUYE
Hawaii, Chairman
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PATRICK J. LEAHY
Vermont
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TOM HARKIN
Iowa
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BARBARA A. MIKULSKI
Maryland
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HERB KOHL
Wisconsin
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PATTY MURRAY
Washington
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BYRON DORGAN
North Dakota
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DIANNE FEINSTEIN
California
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RICHARD J. DURBIN
Illinois
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TIM JOHNSON
South Dakota
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MARY L. LANDRIEU
Louisiana
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JACK REED
Rhode Island
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FRANK R. LAUTENBERG
New Jersey
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BEN NELSON
Nebraska
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MARK PRYOR
Arkansas
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JON TESTER
Montana
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ARLEN SPECTER
Pennsylvania
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SHERROD BROWN
Ohio
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Republican Members

THAD COCHRAN
Mississippi, Vice Chairman
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CHRISTOPHER S. BOND
Missouri
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MITCH MCCONNELL
Kentucky
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RICHARD C. SHELBY
Alabama
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JUDD GREGG
New Hampshire
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ROBERT F. BENNETT
Utah
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KAY BAILEY HUTCHISON
Texas
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SAM BROWNBACK
Kansas
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LAMAR ALEXANDER
Tennessee
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SUSAN COLLINS
Maine
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GEORGE VOINOVICH
Ohio
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LISA MURKOWSKI
Alaska
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-----------------

Read more about the bill’s other appropriations recommendations:    http://appropriations.senate.gov/news.cfm?method=news.view&id=5d9a8abc-e3ee-4c49-9649-1f1311286566

Iraq to Compensate Gulf War ex-POWs

Written by AFP

(BAGHDAD, IRAQ – AFP) has agreed to financial compensation for Americans who say they were mistreated by executed dictator Saddam Hussein's regime during the 1990-91 Gulf war, the US embassy said on Saturday.

'The agreement was signed on September 2,' US Embassy spokesman David Ranz said. He could not confirm the size of the settlement, but the Christian Science Monitor reported that Baghdad had agreed to hand over 400 million dollars (S$536.5 million) in compensation.

The deal was signed between Iraqi Foreign Minister Hoshyar Zebari and US Ambassador to Baghdad Jim Jeffrey.

Iraq's August 2, 1990 assault on neighbouring Kuwait was rapidly met with a concerted international military response that pushed Saddam's forces out of the emirate and eventually ended in his ouster by a US-led coalition in 2003.

Several US citizens were held by Saddam's regime during the war over Kuwait and used as human shields to deter coalition attacks, with some claiming they were mistreated and tortured by Saddam's forces.

'The agreement was signed between the two countries to resolve several legal claims inherited from the former regime for US citizens,' Iraq's foreign ministry said in a statement on its website. -- AFP

Study: Proof That a Gut-Wrenching Complaint -- Irritable Bowel Syndrome -- Is Not in Your Head

Irritable Bowel Syndrome is a “Presumptive” condition for Gulf War veterans

(ScienceDaily) — Irritable bowel syndrome makes life miserable for those affected -- an estimated ten percent or more of the population. And what irritates many of them even more is that they often are labeled as hypochondriacs, since physical causes for irritable bowel syndrome have never been identified.

Now, biologists at the Technische Universitaet Muenchen (TUM) have shed new light on the matter: They have discovered mini-inflammations in the mucosa of the gut, which upset the sensitive balance of the bowel and are accompanied by sensitization of the enteric nervous system.

Flatulence, constipation and diarrhea, nausea and stomach cramps: Irritable bowel syndrome (IBS) can turn digestion into a nightmare. Frequent visits to the bathroom are often accompanied by sleep disturbances, headaches, and backaches. In Germany alone, some seven million people are affected by the disorder -- and by the fact that their irritable bowel syndrome is often deemed psychosomatic. This is because the organic trigger of the disease has never been discovered, and consequently the various therapeutic interventions are disappointing for both the patients and their doctors. That may soon change, however, because now, for the first time, biologists in Munich have nailed down hidden physical causes of this bowel disorder.

Professor Michael Schemann's research team at the TUM Department for Human Biology has managed to demonstrate that micro-inflammations of the mucosa cause sensitization of the enteric nervous system, thereby causing irritable bowel syndrome. Using ultrafast optical measuring methods, the researchers were able to demonstrate that mediators from mast cells and enterochromaffin cells directly activate the nerve cells in the bowel. This hypersensitivity of the enteric nervous system upsets communication between the gut's mucosa and its nervous system, as project leader Prof. Schemann explains: "The irritated mucosa releases increased amounts of neuroactive substances such as serotonin, histamine and protease. This cocktail produced by the body could be the real cause of the unpleasant IBS complaints."

The TUM researchers in human biology are blazing a trail as they follow this lead. Their current focus is to what extent nerve sensitization correlates with the severity of symptoms. Working with colleagues from Amsterdam, they have already substantiated the clinical relevance of their results: Irritable bowel symptoms improved after treatment with an antihistamine known for its immune-stabilizing effect in the treatment of allergic reactions such as hay fever. Thanks to funding from the German Research Foundation (DFG), the scientists are now investigating whether the improved symptoms are accompanied by a normalization of nerve activity.

Successful identification of the active components could enable the development of effective drugs to treat irritable bowel syndrome. Even now, though, the TUM team have made life easier for many IBS patients, in that they have shown that the chronic disorder does have physical causes and is not merely "in their heads."

SOURCE:  Technische Universitaet Muenchen (2010, August 20). Proof that a gut-wrenching complaint -- irritable bowel syndrome -- is not in your head. ScienceDaily. Retrieved September 5, 2010, from: http://www.sciencedaily.com­ /releases/2010/08/100819141950.htm

Chronic Fatigue: XMRV Virus and Anti-Retroviral Drugs

Chronic Fatigue is a common symptom in Gulf War Illness; Chronic Fatigue Syndrome is a “Presumptive” condition for Gulf War veterans

Written by Cinda Crawford

(HealthMatterShow.com) - As reported 8/31/10 in Retrovirology, researchers are seeing some success in having XMRV retrovirus react to HIV Anti-retroviral drugs for CFS. (Sorry if the link will not work. It seems to be functioning hit or miss from their end, but the information is included below. Keep reading.)

Do their conclusions mean you should spend money to get tested for XMRV right now? Probably not. Do they mean that you should consider taking anti-retroviral drugs? Truly, no. Their conclusions are not that well-defined. Not yet.

Even so… no one can walk in someone else’s shoes to feel their desperation or fading hope, but truly this seems like a premature action to me. I urge you to wait for science to catch up with the news and expectations. We will eventually have a clear picture of XMRV, but unless you want to chase every possible scenario out there, it is more prudent to wait.

(See the abstract below.)

Abstract (provisional)

Background
XMRV (xenotropic murine leukemia virus-related virus) is the first known example of an exogenous gammaretrovirus that can infect humans. A limited number of reports suggest that XMRV is intrinsically resistant to many of the antiretroviral drugs used to treat HIV-1 infection, but is sensitive to a small subset of these inhibitors. In the present study, we used a novel marker transfer assay to directly compare the antiviral drug sensitivities of XMRV and HIV-1 under identical conditions in the same host cell type.

Results
We extend the findings of previous studies by showing that, in addition to AZT and tenofovir, XMRV and HIV-1 are equally sensitive to AZddA (3′-azido-2′,3′-dideoxyadenosine), AZddG (3′-azido-2′,3′-dideoxyguanosine) and adefovir. These results indicate that specific 3′-azido or acyclic nucleoside analog inhibitors of HIV-1 reverse transcriptase (RT) also block XMRV infection with comparable efficacy in vitro. Our data confirm that XMRV is highly resistant to the non-nucleoside RT inhibitors nevirapine and efavirenz and to inhibitors of HIV-1 protease. In addition, we show that the integrase inhibitors raltegravir and elvitegravir are active against XMRV, with EC50 values in the nanomolar range.

Conclusions
Our analysis demonstrates that XMRV exhibits a distinct pattern of nucleoside analog susceptibility that correlates with the structure of the pseudosugar moiety and that XMRV is sensitive to a broader range of antiretroviral drugs than has previously been reported. We suggest that the divergent drug sensitivity profiles of XMRV and HIV-1 are partially explained by specific amino acid differences in their respective protease, RT and integrase sequences. Our data provide a basis for choosing specific antiretroviral drugs for clinical studies in XMRV-infected patients.

Best wishes for your speedy recovery from CFS, Chronic Fatigue Syndrome,
Cinda Crawford, host of the Health Matters Show

Newest Edition of Fibromyalgia Magazine Available Online - Digital Edition is Free

Chronic Widespread Pain is a common symptom in Gulf War Illness; Fibromyalgia is a “Presumptive” condition for Gulf War Veterans

Fibromyalgia AWARE is the first consumer magazine designed especially for people with fibromyalgia and other chronic pain disorders.

This issue’s Cover Story:  Expert opinions on the proposed new diagnostic criteria
Click here to enjoy your FREE digital issue of Vol. 23 of Fibromyalgia AWARE or subscribe to the print edition.

Top 10 Fibromyalgia Fears

Fibromyalgia is one of several “presumptive” conditions for Gulf War veterans

Written by Cinda Crawford

(HealthMattersHow.com) - Are you experiencing overwhelming Fibromyalgia? See why today’s post of Top 10 Fibromyalgia Fears is so important if you or someone you know is suffering and languishing in the depths of the illness.

No one is arguing that your life is a long ways from being normal, but you don’t have to live with Fibromyalgia fears.

Probably… at times… lots of fears hold you hostage. Some of the major culprits are listed below. Let’s take a few moments to look at them honestly and under the microscope of common sense. It’s may be tough, but be honest about what you really feel. In doing so, you may gain a sneak peek at a better quality life that lies ahead.

Fear #1: You not understanding Fibromyalgia. With Fibromyalgia being such an expansive and confusing illness, it’s easy to see why you do not understand it or know all there is to know about it. To date, no one has a handle on all of the implications of the illness. And because you don’t, you naturally feel the emotion called fear. For our purposes today, that’s fear of the unknown.

Here’s a short exercise to prove to you the dynamics of this fear. Take a moment to see if you feel that uncomfortable, fear-based emotion in the pit of your stomach. Take a deep breath and blow it out slowly. Is the fear there? If you feel it, know that the emotion of anxiety is in large and in charge, probably exacerbating your illness symptoms right now! Fear of Fibromyalgia can be very scary. It can make you doubt yourself, your health and your future. What is the bottom line for this fear? You worry that you may never have a good handle on understanding or managing Fibromyalgia.

Fear #2: Other people not understanding Fibromyalgia (or you). It’s common for other people to be confused about the illness: people including your spouse, your children, your peers, the people you work with… gee gads, even your doctor! If a person only sees what’s on television advertisements 24 hours a day, they think you simply hurt and that all you have to do to fix your problem is take a pill. “Hey, take your medicine and stop complaining!”

Fear #3: Your health getting worse. With Fibromyalgia not only do symptoms come and go, but new ones seem to crop up all the time. You begin to wonder if everything that you experience is another manifestation of the illness -or- if you’re coming down with more illnesses and you’ll have to deal with them, too. It is possible for your Fibromyalgia symptoms to worsen, but more likely, you feel worse because of a) you’re not emotionally dealing with the degree of illness you have, b) you’re gaining more symptoms from other illnesses, c) you’re going through a general deconditioning process in your body, and/or d) there are age-related factors in play.

Fear #4: Staying so sick. You may be at a level of profound illness that is getting tough to deal with. You’re immobile much of the time. Part of the day, you’re in bed. As you struggle to live any part of a normal life, everything is getting harder to accomplish. You even may be worrying that staying sick with Fibromyalgia is your future.

Fear #5: Living everyday in pain. People who live with long term, Fibromyalgia pain have a chronic pain condition thought to be caused by overstimulated nerves. The nerves mis-fire or fire too easily, ending in a cascading pain syndrome that can easily spiral out of control. (Doctors sometimes call this “ratcheting up” the pain.) Even without knowing all the science, it’s not hard to understand how too much pain is an enemy of good health. Pain is the body’s alert mechanism: “Stop! Something is wrong!” [Note: Medical research tells us that people who suffer with higher degrees of long term, chronic pain actually have lower tolerances to pain (i.e. pain thresholds), not higher ones.]

Fear #6: Feeling lost in brain fog. Brain fog is a common symptom of several illnesses, but it is often mentioned in relationship to Fibromyalgia. I’ve written about the topic of brain fog. Put the term “brain fog” in the search engine box on this website and research away. You will find several reference posts.

Fear #7: Getting more and more disabled. No one wants to be disabled, yet people with unrelenting Fibromyalgia usually can sense if they have passed a certain point and the threat of disability looms large in their future. If you’re are at that point now, remember these two things:

a) Today Fibromyalgia may be incapacitating you to the point of wondering if you should apply for and go on a disability status. Even so, know that at some point in the future, you may be able to improve. You can be one of the people who comes off disability! The key is to never give up. Don’t assume that you’re better off staying on disability simply because you fear the future and what it might mean. Start working today to prepare yourself for resuming normal health. Get ready to enjoy life again.

And b) Fibromyalgia is not a death sentence. The illness itself carries no risk of death. Surely some people feel so despondent that ending it all may seem more advantageous than living through it, but that is an emotional/ depression issue which can be addressed by health professionals.

Fear #8: That your symptoms will never resolve and you will be forced to live out your last days and moments in unrelieved, excruciating pain and agony. For many people, this is an all-too-real fear. They have pain now that can be almost unbearable. How can they hang on if it continues or if it gets worse? My suggestion is that you will benefit by stopping this type of thought process. This is what is called catastrophe thinking. It will only serve to escalate your pain level and to usher in full-fledged depression. There are many things that you can do to help relieve your pain today and many of them are discussed on this blog and podcast, the Health Matters Show. *Take a look at the exclusive resources mentioned below. With training and special work, it is possible that “you” can learn to stop this type of negative-thinking process and begin to heal.

Fear #9: Losing the life that you love. So many people with Fibromyalgia cannot keep up the routine (the pace) that they had before getting sick. As a sufferer, if you have to give up a piece of yourself here and a piece there, do you risk losing the vibrant life that you loved before illness? To many people, this is one fear that hurts the worst and can be the most incapacitating. Yes, the physical battle is horrible, but they can live with it. However, the mental struggle is constant and can wear a person down.

You fear having to give up everything you’re worked for in life and that can seem like an unconscionably high price to pay.

Fear #10: Never achieving the “life” that could have been. If you fear that your “old” wonderful life is gone and you have little to no chance of reclaiming it, you’re feeling a mighty big fear and a profound sense of loss. In this circumstance, that feeling is perfectly normal, but it doesn’t have to rule what you do or how you feel from now on. There is help for you to feel better and reclaim your life. More on these points below.

All of us want to be healthy, but more than that, we all have hopes and dreams. If you were allowed to grow into a mature adult before Fibromyalgia descended upon you, you had dreams and aspirations of who you want to be, what you wanted to accomplish in life and how grand your future would and could be- long term. Today you may be doubting that you’ll ever see those dreams come true. That vantage point can seem very discouraging.

If you’re a young person and your ‘growing up’ process was stunted in mid-stream, it’s a little tougher to envision your future. I encourage you not to stop trying. In your quiet moments, dream like a little kid again. See yourself happy. See yourself in this world being a nurse, a doctor, a lawyer, an office worker, a writer, a diplomat, a mother or a father. Simply dream and fantasize about the future that you want. The little kid in you knows how to do this and wants to come to play! Give him or her the opportunity to have fun. This type of exercise can jumpstart and motivate you. Talk it over with your parents and have fun with this!

If you continue to worry about your health today and your future for tomorrow by thinking only thoughts of catastrophe, doom and gloom, that’s when your initial Fibromyalgia Fears can begin to draw you down into a pit of hopelessness. I encourage you… don’t go there. Don’t allow yourself to stay stuck in that kind of negative and potentially dangerous thought process.

Instead stay with upbeat, positive, can-do messages. Know that it’s possible to change “how” you live with this horrible illness even if you’re on disability. Know that in doing so, you will change your future. You may or may not achieve exactly the future you dreamed of, but sometimes the situation still can turn out good.

Severe illness changes us.

We all strive to implement better changes and, thus, achieve better outcomes. That process only happens when you and I can look back at the “valley of the shadow” that we’ve walked through and begin to see the glorious view ahead from a stronger, more aware and higher vantage point. Imagine… looking foward from where you are today. Is your mountaintop view splendid?

I encourage you to use this good information to educate and motivate yourself to move ahead from where you are now. Below you’ll find links to two tools that may help you. My individual and membership clients make use of them everyday to help calm their Fibromyalgia fears and begin to move forward in life. In the process, they are seeing the way through and many are getting their lives back!

That’s it for today. Thanks so much and some back to visit the Health Matters Show often. Your comments are welcomed and appreciated. Lets you and I share what we know and conquer overwhelming Fibromyalgia fears together.

Cinda Crawford
Creator of Sacred Cellular Healing -and- the Learn How to Heal Yourself membership course

Don’t leave before you check out the hyperlinked resources above, plus grab yourself a copy of this information that’s been made into a short report for you. Read and share at will! Top 10 Fibromyalgia Fears

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

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.

(MultipleSclerosisCentral.com) - MS; Demyelinating disease

Symptoms

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

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)

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.:  http://www.ncsl.org/default.aspx?tabid=13793

American Legion Provides Congressional Testimony on GWI

STATEMENT OF
IAN DE PLANQUE, DEPUTY DIRECTOR
NATIONAL VETERANS AFFAIRS AND REHABILITATION COMMISSION
THE AMERICAN LEGION
BEFORE THE
SUBCOMMITTEE ON OVERSIGHT AND INVESTIGATIONS
COMMITTEE ON VETERANS' AFFAIRS
UNITED STATES HOUSE OF REPRESENTATIVES
ON
GULF WAR VETERANS

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.

Conclusion

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.