The Gulf War Veterans’ Illnesses Task Force (GWVI-TF) 2012 Report

Use the Gulf war registry, use the GW vtes problem lists. There is many things we have wrong, that is common between us.

The data is there, stop trying to reinvent the wheel every time. We all have sleep problems, a combination of no rem sleep, and central sleep apneas, yet every doc wants all of us to go through trying all the meds, even though they have not worked for other GW vets. Recognize sleep disturbances w/ sleep apnea, as compensable illnesses. We all have bad migraines, yet some get compensation, and others don't, depends on the way the wind was blowing when the RQ decided the claim.
Do some meaningful nationwide research on our problems. Not this stuff of mindfullness training, that is only tested on a small number of vets in the SLC area.

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    George HaleGeorge Hale shared this idea  ·   ·  Flag idea as inappropriate…  ·  Admin →

    21 comments

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      • Jim BunkerJim Bunker commented  ·   ·  Flag as inappropriate

        You can get on the Gulf war registry at your VA hospital. Sadly most do not know where it is. So ask where the Agent Orange Registry is. Once your there, ask for the Gulf War registry. Make sure they give you the right paper work. They sent me the paper work for Nam. I took it back and it was sent again.

        Some VA's are great at this and the Topeka Kansas one sucks.

      • Anonymous commented  ·   ·  Flag as inappropriate

        How do you sign up on the Gulf War Registry? My husband was sick from the prostigmine tabs, has most of the symptoms, was exposed to a lot of DU, and although his specific unit isn't listed on the Pit Burn, all the units he supported are on there, he was also the CPT's driver and was everywhere. Even the T was finally checked 21. NHL-300s-600s.

      • Roxanne GrayRoxanne Gray commented  ·   ·  Flag as inappropriate

        Please contact the war related illness and study center online. My fiancée Tom is a gw1 vet with a lot of the problems so we hope to get better health care. The VA doesn't know how to deal with it

      • JTJT commented  ·   ·  Flag as inappropriate

        So you see we had to self medicate, no one believes you. Unfortunately for us, if you did self medicate with the alcohol or whatever to deal with the pain, l hope now you may be treated with the utmost compassion and care as you deal with this illness.

        I have not experienced it yet, still denied any compensation for any GW complaints since retiring . I have a CPAP going on 8 years now, should have had it in 1991 after being in all three countries during/after the 89 hours to victory.

        Yes, still looking for help after all these years. But, finding my own help as I try alternatives since alcohol did not work and the VA has been incompetent. So don't hate when I use non-prescribed medications or therapies, looking for relief of my symptoms.

        22 years and still looking for answers, sad, very very sad.

      • EzjayEzjay commented  ·   ·  Flag as inappropriate

        Gettng the word out? Communicating with the Gulf War Vets? Wasn't the last report suspose to guarentee an easier way for the GW Vet to find help...reaching out to the Vets?..This forum has turned into a place to come seek help instead of a place where we can suggest better ways the VA can help us...(Same thing last year). Read through, and you will find Veterans looking for places they can go for help...This would not be happening if these facilities respected dirrectives to learn about GW Vets, and instead of sending them away...helping them. The VA is responsible for insuring VA hospitals understand and are prepared to help GW Vets.

      • michael carlsonmichael carlson commented  ·   ·  Flag as inappropriate

        i was in storm & sheld how do i go about getting an exam my v.a. doctor diabled me but not service connected by i have a few problem's under this gulf war illness i have contacted my local v.a. hosp. no return call's anyone have some good info i can use thank's mike in s.c.

      • michaelmichael commented  ·   ·  Flag as inappropriate

        It's truly sad that many GWI veterans have to continually be jerked around for serving their country honorably.

      • George HaleGeorge Hale commented  ·   ·  Flag as inappropriate

        The gulf war registry is supposed to look at everything, and determine anything you have wrong. You can go back as many times as you want, as new things develop. There is no limitations on what they are to look at.

        The registry was not setup for treating us, but rather to see how many of us have what wrong.

        The problem is that it stops there, The VA does not do anything with all the Data they have collected.

        If the VA were to update and publish the data, they would find out how many of us have sleep apnea, Multiple Sclerosis, Brain problems, Migraines, ect. Then they need to use that data to create more presumptive, to cover what is wrong with us. Its only fair, to ask that our compensation package, adequately cover what it wrong with each of us.

        Congress, and the VA have already accepted that we were exposed to such a toxic mix of stuff, that no one can sort out what exposures caused what damage to us.

      • Daniel LinesDaniel Lines commented  ·   ·  Flag as inappropriate

        Using the registry is part of the problem - Many, if not most, of those with Gulf War Illness never served in the Gulf War, and are thus excluded from the registry. These symptoms existed years before there was a Gulf War and have been effectively ignored. If you ignore much of the afflicted population in studies, you will never find the root cause of the illness. The designation of Gulf War Illness is merely another subterfuge to limit government liability and to deny benefits and treatment to those who need it. The government is well aware there is a health problem extending well beyond the Persian Gulf as I, and I am sure others, have brought it to their attention many times. I've been told on several occasions by the Gulf War Illness Task Force that they were "...unaware that anyone had these problems prior to the Gulf War" and that they'd look into it and get back to me. They've said that every time I've spoken with them over many years and several Presidencies. But as I was told at Fort Bragg in 1985, when so many people in my unit were becoming ill that I took my concerns to the folks at Environmental Health: "We've been ordered to not look at this." Apparently that order is still in effect.

      • Jennifer HJennifer H commented  ·   ·  Flag as inappropriate

        By now examiners should reflect some knowledge of what GW vets have been DX'd w/ esp the ALS, lymphnode probs, stroke in the hyperthalmus, rashes, GI probs, unusal lump in neck, sinus issues, and so much more - the PG Protocol Registry needs undating as new developments happen - many PG Vets are having symptoms of health probs 10-20yrs earlier that their age should normally reflect - inc. early metapause, prostate cancer etc...Jen H- R.I.

      • Maria CarrMaria Carr commented  ·   ·  Flag as inappropriate

        How do I the mother of a gulf war baby, get help, answers. His medical issues ate the same as his father, his father is not willing to help me with the VA

      • Jim BunkerJim Bunker commented  ·   ·  Flag as inappropriate

        There is no real standard in the registry exam. The data is off. When you ask about the birth problems in it you do not let those of us that did not even try to have kids after the war op out. I had to reply as if I did and there was no problems. Thank you Topeka VA.

        They also said in all of the exams I had no problems. I was given a medical discharge. started having migraines, IBS, upper GI problem, light hotheadedness and nerve problems in the desert as per the records from the EVAC hospital. Been seen there after.
        Why is my rating say YES and the reg say no. the reg exam is a white wash and never should be used for anything. I do remember writing Col. Gingrich on this.

      • Chuck AdamsChuck Adams commented  ·   ·  Flag as inappropriate

        I have been diagnose with sleep apnea also (but have a hard time using the c-pap) and have been dealing with depression and anger issues ever since I came home 20 yrs ago but it seems that no one is taking it very seriously. I do have a habit of putting on my happy face mask all of the time and it seems that in doing that I lose any kind of chance for help.

      • Anonymous commented  ·   ·  Flag as inappropriate

        As a GW veteran we did not have any post war services. We were stuck back into our units as though we experienced
        nothing. Now many years later, veterans are experiencing medical issues. And many are being denied compensation for claims because its not in there medical records. Myself like many other veterans were not aware of many conditions out there until now because its begining to surface. The V.A. needs to be consistant across the board with claim decisions. Many veterans are being denied for claims for the same thing they just approaved another veteran for.e

      • TammyTammy commented  ·   ·  Flag as inappropriate

        The VA needs to do more, then have the IOM look through literature. Its easy enough to look at the VA electronic records, and see what percentage of us have sleep apnea, Chronic complex migraines, neurological issues,ect.
        After all these years, the VA still does not recognize GWI. It should be a ratable medical issue. Since several studies have proven we have brain damage, GWI should be treated the same as TBI.
        Focus on the big picture, and stop blaming it on stress.

      • EzjayEzjay commented  ·   ·  Flag as inappropriate

        I have sleep apnea and it has been at the bva since 2009 because the va said it's not gulf war related and since I filed so late after I got out of the Army...I didnt get it there...How did I know I had sleep apnea, or what it was? Someone had to tell me, and I had to believe it, and had to have a sleep
        Someone needs to tell these raters sleep apnea is sleep problems. We have tonuse a machine nightly to sleep.
        Study

      • HankhillHankhill commented  ·   ·  Flag as inappropriate

        Every Gulf War Veteran that I know has Sleep Apnea, including myself. This condition should be added to the presumptive list for us Gulf War Vets. Currently "Undiagnosed Sleep Disturbance" is on the presumptive list, BUT good luck getting a VA Doc to diagnose you with "Undiagnosed Sleep Disturbance". SLEEP APNEA SHOULD BE PRESUMPTIVE!!!

      • JIGJIG commented  ·   ·  Flag as inappropriate

        Very good point, I retired in 2002 from the Marines and my health issues include: Sleep Apnea, Excessive Daytime Sleepiness (EDS), Asthma, GERD, IBS, Neurological & Mental issues. Plus degenerative bone diseases, Spinal Stenosis and I know that I’m forgetting something. So the point I am trying to make here, is the VA treats me for all my issues; but refuses to acknowledge my health problems could be related to the Gulf War or my military service.

      • George HaleGeorge Hale commented  ·   ·  Flag as inappropriate

        The card is worthless, if the docs do not even read it. My PCP will only see me once a year, unless I need to see him for other issues, then he will only discuss that. 10-15 mins, is not enough time to get past hi. The docs do not want to take the time to listen to what we went through. Three times in the last year, the nurse has called me, and said my labs were off, and the doc wants me to take fish oil. Every time, I had to tell her that I have been taking fish oil for 4 or 5 years now. I'm still waiting.
        I had a PCP, tell me that she never diagnoses anyone with CFS, and she has been at 4 VA's, and thats the policy at all of them.

        Pick 5 VAMC's, and call any off the published numbers, and ask for the "Gulf War Registry". I'll bet at least 2 will tell you there is no such department.

        Your fast letter 10-03, does not even cover Desert Storm.

        I implore you to go and search out some of the Desert Storm forums, and spend some time reading what is going on with us.

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