Visibility of VA Gulf War programs and the GW Task Force
There is a problem when a entiity is not visible to the public. It operates internally making decisions that often are favorable only to that committee while not receiving tangible input from outside sources that might observe disparages the committee cannot. The GWVITF still operates as a closed door invisible entity with no website, no call in VANTS lines or ability to listen in to meetings, public minutes, or pretty much anything other than its annual reports. This is exactly how the defunct DOD Research Working Group functions that makes so many stale bad suggestions year in and out for Gulf War vets. Left to the government Legacy personnel on the task force, as long as this is allowed to operate in the dark it will function much like last year. Unenforceable on policy, and out of touch with a live public. Its clear that VA ORD has a very hand in keeping it this way and would object to anything that would change this. How the RAC steering committee has been stiff armed in all of this is a good example. There needs to be outside involvement on a monthly basis in Gulf War Illness policy from the veteran community that isnt censored or hand selected by VA to produce a OMB freindly good ole boy club to keep comments at bay. Such as the way DOD uses the excuse "If your not chartered by Congress then you cant attend" or should I say internal memorandum policies. Gulf War vets or I should say "Grass Roots" should be welcomed to participate like they were before 1999. When there were 33 of them and they showed up. The Bush administration created the "chartered only" mentality that has not benefitted Gulf War vets these last 10 years. To say there would be outreach would mean veteran involvement, and that has not been the case at least since 2009 when the VA ACGWV disbanded. So we have a problem here of policy and who is pushing it. Is this Presidential endorsed policy, or up to the staff under the Secretary of VA to alter. More has to be done than just saying "We will hear from you next year" and then censor our comments from this report as was done with last years report ( over 150 pages of materials left out ). Outreach cant be just left to VA internally as Environmental Agents had a budget for it and all but shut down on this to include the "Gulf War Review". This needs to be open, and the fact that the Task Force is a closed door entity shows that this to needs changes or some outside post on it. This isnt just a outreach issue, its a policy issue in dealing with the veteran community to include advisory committees. Which I now understand VA wishes to try and muscle the RAC into other committee meetings to save money having its own. What I have seen since the first GWVITF meeting is VA take darker and darker oppressive steps with the last veterans that try to work with it on Gulf war issues. So its time to build a new foundation of trust, restructure, and get rid of the legacy people who keep it in the past. Look to the future.
Angel Warrior 07 commented
I think this is very important. Nothing good is ever done behind closed doors. I learned long ago concensus meant having a moderator who lead the group in the direction they want it to go. The moderator ask for comments such as you are doing here to make everyone feel involved and as if they are in the decision making process, and give them a warm and fuzzy feeling. But in actuality decisions have been made behind closed doors already and the direction is already known. (Roberts Rules) All doors should be opened. Veterans should be involved and should be able to attend or listen on the phone or have it available to them by video or some how. Our tax dollars are paying for it and we should be allowed to be a part of it, either on the board or by viewing it. Open the doors!!!!
Denise Nichols commented
Task force meetings should have been video audi recorded and live transmission so vets could have had access and feed in as you went along instead another thing done behind closed doors. And outreach what a joke where is the Gulf War illness Vet Newsletter, where is the information flow to get people on to give comments you put it in federal registry how many veterans read the federal registry? It is the veteran advocates that are trying every day to get word out every way possible to their fellow gulf war veterans how to access this site and feedin comments and vote. This is riduculous....if word was really out there ie outreach many thousands of vets would be responding. How about the vets not on internet, or facebook, the tv news channels in local news did not even cover this much less newspapers! Public Affairs at VA is a failure especially for gulf war veterans. In this day and age meetings can be sent live over the internet and feed in gained that would be valuable. The Civilian CFS community gets better coverage than gulf war illness from the agencies they deal with HHS, NIH, etc.
Attention TASK FORCE This message is for you. Veterans seek treatment for conditions told nothing is wrong with us even if we are sick. Often told idiopathic or may be viral. Let me set the record straight I was in excellent physical condition before my military service in Gulf. Yes I could do it all run, push up, setups anything... overall well rounded solider.
And for those who wonder yes I had High Pt scores consistently 295 above that is when the test were structured differently . An example someone in their 20'sr had to run less than 12 min in run to get 100 points in that area .
I have 9 siblings who have minor health problems and out of everyone I was always the healthiest as a child and adult until my military service. By the way I also one of few whom took active interest in staying healthy. Now fast forward today i have chronic health issues with no comorbidities except those after my military service. Stark contrast from then to know. Let me list a few conditions cardiac, gastrointestinal, neurological, and musculoskeletal. All this begin at a young age with no history of smoking,drinking or drug use. So let me tell you people first hand after I became ill enough to be hospitalized several times nearly dieing would VHA even believe I had a problem. Then for them to only tell me they don't know why. Do you think this is good enough evidence for VBA acknowledge GWI exist with me? No it was not even if had many years of chroncity some even presumptive conditions.
I think not since I am only service connected for one condition so far.And must wait until someone follows the law and regulations properly and get fair claim adjudication. But let me tell you how my life has been since this GW illness hit me. My quality of life suffers significantly not only did I lose my home because I could not work but everything I owned. Do you think anybody cares? What is the purpose of these 30 day periods are you actually going to do something to help veterans? Why don't you go to the VBA regional offices and get them to follow the presumptive rules for GWI the training letters and the fast letters. Instead delay delay delay and make veteran appeal right. Yes you can appeal what about all those years your living in poverty waiting for someone to put the pieces of the puzzle together while your children go without. Yes VA pays back pay how in the hell does that help when your child has birthday or Christmas time is here. The back pay will not make us better, compensation years latter will not get our homes back. The list goes on and on. That is why I call all this smoke and mirrors. Do something for us please. I have always been patriotic but this foolishness with claims process is ridiculous. I can be reached at firstname.lastname@example.org if you like specifics and some additional suggestions.
I had a VA doctor tell me to change soap for my skin rash...That would define crazy, "To keep doing the same thing expecting a different result"..I told her I have tried every soap there is...and she gave me that stare....If what we're writting here means nothing, and no one is going to read and act on these comments,..why even go down this road? Political? It should be obvious now, we're ready for some justice...Your Doctors, and Raters need a class...I had an VA doctor document everything I have wrong, concured! Then VA turned it down anyway...so what do we do?
The VA should put the entire medical and administrative staff that deal with Vets online, so when they lie, change reports, or treat Vets with malice, the public can see for themselves. Make a registry of ALL VA employees available to the public and how they rate with the Vets. Also, anything good or bad follows these employees -- especially the contracted doctors/residency doctors. My residency doctor had no idea about my symptoms. She, to her credit, was clueless because of being thrown into the VA system on a 3 month cycle and only having one attending doctor who sat in a office to report along with 7 other residensy doctors.
All veterans organizations need to act as one , united somehow. Dav 90 years of service, american legion,vfw, etc. Its hard to kepp in the loop when people move or like me ocasionaly homeless.
Need to get the word out to all the VA employees, that GWI is real. Due to the stories that went around, of how the VA treated the DS vets, I resisted, and tried everything I could to keep employed, and not have to deal with the VA. For me, it did not work. I got thrown out of the National Guard for not being able to pass the PT test. Eventually got fired from several different jobs, due to the fatigue. Thats when I had no choice but to try to navigate the VA system. I eventually ended up loosing my house. Now my family and i live with my parents, And I cry almost daily to see what I did to my Son, watching him grow up in poverty. Yea, everyone says just relax, the decision will come eventually, and you will get a big back pay, but that will not change that my son cannot even participate in school sports, because I cannot afford the $500 fee.
I had a C&P, where the physicians assistant that did the exam, said "I was over there, and I don't have any problems". His whole report was trying to contradict the VA specialists, and say that all my problems were due to depression, which was not mentioned any where in my medical file.
I understood the VA would be contacting Gulf War Vets to discuss reeval- During the first evaluation of the GW Illness - My spouse and I were told that the physician that did our evauluation -did not believe in this mess and that being tired all the time, and skin rash was not a symptom. We were told to go home there was nothing wrong with us. We understood at that point tha the VA had hired physicians that did not care or know about the Vets. It would be nice if this visability would include more indepth training and knowledge of the physicians to get the disability documented rather than just pushing the vets through like paper clips. Thank You for listening.