A Desperate Plea For Gulf War Veterans To Rally! Dc Sept!

[allan]

DSNurse@aol.com wrote:

From: DSNurse@aol.com

Date: Sat, 28 Jun 2008 05:38:59 EDT

Subject: Re: Unorthodox Advocacy

To: tomcat6169@yahoo.com

A Desperate Plea for Gulf War Veterans to Rally! DC SEPT!!!!Reply to

DSNurse!@yahoo.com

Forward to all email lists...........post on websites...forward to other gulf war veterans, Vietnam VETERANS, etc Widest distribution please I really am begging you! What we do with this committee counts for all the others out there!I have kept the battle going and a few others that refuse to give up! But WE Desperately need you guys with the bronze stars forward. WE need the combat veterans and support personnel and the officers too! I am just a nurse officer old Vietnam Era and Gulf War vet at the border that stood for all that couldnt................I did what I knew was right and honorable.....moral and ethical.... I am calling you guys back out because WE simply can not do it without YOU and the rest. I have had faith we could make a difference since I helped the first group of vets go forward in 1993 and from my first trip in April 94. Without faith, a bit of fight, and face time we have nothing left................ I went to every hearing...pushed Shays to have the vets tell their part and not the VSO's...I went to every PAC meeting in DC, the one in Atlanta...the one I forced in CO....the one in Chicago....I went to every PSOB meeting....I went to every one of the IOMs that was possible...........I went to OSAGWI town hall here in CO....and wherever I could.............I went to every RAC except for one in Orange New Jersey...This constant battle since 1993 has left me low extremely low at times...but at the lowest time I got another call for help that kicked me in to gear. I am trying to do that for each of you now...kick into gear! I did not do it for glory................... I lost my mom, uncles, brother, and brother in law................and missed time with my extended family that can never be replaced ever!I lost time with my husband(dont know how he has put up with me and stood behind me standing up as I have)....lost time with my only child my daughter.........who said mom you love the vets more than me and you cannt be a mother to all of them........... I did it because it was what I could do to try and save lives and to give each of you the dignity and care you DESERVE that you EARNED! I was there to give nursing care..........it just wasn't enough! I went to battle the multiheaded snake not for me but for you and all the rest. I have not often begged like I am doing now!!! This is when we need you and others to come make that impact!!!!! WE the few of us that have stood ....we are a fewWE NEED You and others please! Now we are pushing to try to get the new committee which right now is scheduled for Sept 24-25 to move up their date to closer to the RAC meeting and release of their report on the 16th.............I am kicking the hill for a hearing on 17th to Receive the RAC report......... WE need the public comment to the new committee Gulf War Vet Advisory committee on their second meeting to push them now to action as they start! I will let you know if we are successful in pushing the committee Gulf War Veteran Advisory Committee to move up their date from Sept 24-25............we those with groups are writing not only the committee but Secretary Peake to make them meet closer to Sept 15-16 RAC meeting. Please I beg you....I need you and others out of your bunkers! Please help all the rest of the veterans of the Gulf War by coming out ONE MORE TIME WE can make a difference with you all but not without! We have lost a lot of our gulf war vets 90-91. We must honor them by doing what is right for the living. WE have those with ALS, Brain cancers, other cancers, MS, Cardiac, Renal problems, and liver problems..............We have those with undiagnosed illness....WE have those that have won their claims to varying degrees, we have those that have given up on claims. WE have those in wheelchairs and those having a hard time getting out and functioning at all. WE have those that are still walking....those using canes...those who have lost hope. Will I refuse for us to go down this way.........I refuse to lose people anymore without a battle and faces they can see in front of them! I refuse to give up on getting us better---the best care---the best attitude---the acknowledgement that this is real PHYSICAL Damage! I refuse to give up on finding treatment that improves our quality of life...that helps our memory and neurocognitive...our fatigue...our pain...our autonomic nervous system dystegulation....our autoimmune problems...and for all degrees of disability. It just simply can not go on and we must all stand to make a difference. I need all of you to listen up! I need you to get out of your bunkers and come together to make a difference for you and your buddies. This is what it is about! Now thru the 17-18 years we have ebbed and flowed....we have hit a low point but I am asking you all to respond now! Please respond

DSNurse1@yahoo.com....or

on these postings! I have looked up hostels and cheaper hotels ...I have checked them on line and will get support to check them on site....will range 25-35 a night I think.....some of the hostels are 4-6-8 to a room bunk beds. WE even have one person checking to see if we can use a field house at a university or school...maybe call in the RED CROSS to help they know how to set up shelters....I have thought of campsite close in to DC....if we had to camp out....or do that between the meetings if they dont move them into closer time periods.....I have thought of setting up tents by the wall or the mall............. We need to check on bus and train into DC....or form groups to come in together to offset travel cost. WE need 15-50 to make an impact will you be one of them? We could use more too!Will your name be on the list? WE cannt do it until we know you all will answer this call! Vietnam Veterans and groups I need your help please...get the word out to all the gulf war veterans you can find....encourage them to come and help us make this happen. Write Secretary Peake and ask him to have the new Advisory committee meet sooner than SEpt 24-25 ask for Sept 18-19 or even Sept 22-23.....so that our veterans can attend the Sept 15-16 VA RAC GWI...a possible hearing on Sept 17th(if we can get the House VA to receive the VA RAC GWI report from Mr Binns, DR Lea Steele, and Dr Roberta White) and then have the new VA Gulf War Veterans Advisory Committee on the 18th and 19th or even 22-23.... The hill is expected to finish by Sept 26th. We have not had a hearing this year on gulf war veterans. WE want to be heard before the election! And should I have to remind all that Iraq invaded Kuwait on AUG 1 1990. The urgency of our moment is now and is well past time---18 years! I know we have leaned pretty heavy on you our older brothers and sisters and mothers and fathers and uncles and aunts.......I am asking one more time for your assistance! Letsa kick some ass while we still can! If we do nothing we have failed each other! Love and Respect to allDeniseDSNurse

DSNurse1@yahoo.com

http://www.honorthenames.com/phpbb/viewfor...3b6706dc2a7e262

http://veterans-coalition.org/gulfwarillness.html

http://www.gulfwarvets.com/ubb/ultimatebb....0056;p=1#000000

http://www.gulfwarvets.com/ubb/ultimatebb....0073;p=1#000000

NEXT MEETINGS IMPORTANT

SEPT 15-16 DC RESEARCH ADVISORY COMMITTEE ON GULF WAR ILLNESS

SEPT 24-25 DC ADVISORY COMMITEE ON GULF WAR ILLNESS

WE NEED GULF WAR VETERANS AT BOTH OF THESE MEETINGS IN OVERWHELMING NUMBERS!!! THE RAC GWI WILL BE RELEASING THEIR HUGE REPORT FOR 08 AND IT IS IMPERATIVE WE SUPPORT AND BE THERE!

THE GULF WAR VETERANS ADVISORY COMMITTEE WILL HAVE THEIR SECOND MEETING AND WILL HAVE THEIR PLANS TOGETHER ON HOW THEY WILL PROCEED IN THE NEXT 18 MONTHS. AGAIN IT IS CRITICALLY CRITICALLY IMPORTANT THAT GULF WAR VETERANS ARE THERE AND PREPARED TO SPEAK IN PUBLIC COMMENTS!

PREPARE YOUR PUBLIC COMMENTS 2 PAGES

SUGGESTED INPUT

YOUR NAME, UNIT, MOS, WHERE IN THEATER, IF YOU SAW SOMETHING WHILE THERE THAT IS PERTINENT TO HEALTH NOW

WHAT YOU HAVE BEEN DIAGNOSED WITH AND WHAT BENEFITS YOU RECEIVE

THE CARE IE TESTING, DIAGNOSIS, CARE AT VA HOSPITALS.....PROBLEMS...IDENTIFY THEM

THE PROBLEMS YOU HAVE HAD IN BENEFITS CLAIMS AREA....IDENTIFY THE PROBLEM

YOUR FRUSTRATIONS....PROBLEMS

YOUR SUGGESTIONS FOR IMPROVEMENTS TO BE MADE! WHAT YOU WANT TO SEE DONE!

CONTACT ME RE IDEAS, NEEDS, PROBLEMS ETC

DSNurse1@yahoo.com

HERE IS WHAT I DID FOR FIRST MEETING....

U.S Department of Veterans Affairs Advisory Committee on Gulf War Veterans

Meeting of June 17-19, 2008, Washington, DC

Comments by Denise Nichols for National Vietnam and Gulf War Veterans Coalition

Thank you for the opportunity to provide public comments for myself and the National Vietnam and Gulf War Veterans Coalition. This is a summary provided in advance of the meeting that I intend to make during this first meeting of the newly created Advisory Committee on Gulf War Veterans. There is so much to say that time will not allow at this first meeting.

Function and Process of Committee: First concerning the actual conducting of this advisory committee we have to encourage you to set your schedule at least 6 months in advance so that we have the dates and places of the meetings. We along with others will encourage you to travel the country and not just stay in DC. We will encourage you to have the VA truly put all efforts out to the Gulf War Veterans of 90-91 to notify them of the meetings using a full press relations in all media but additionally that the veterans are notified in writing or phone from their local VA hospitals especially if the committee is to meet in a certain location. We simply must also have a website devoted to this advisory committee that is robust and kept current and active.

We also want to highly encourage you to have the VA open fully their use of video teleconferencing abilities for these advisory committee meetings. In that way gulf war veterans could go to their local VA’s auditorium and sit with VA Personnel and be hooked in live and be able to offer their public comments. But that doesn’t mean you do one and not the others….it means you do all you can. We are due for VA outreach that never came for us and let it start with this advisory committee.

You need to hear directly from as many of the veterans as possible to truly get the input of those hundreds of thousands. I am aware that Walter Reed eventually had to have customer relations training from Walt Disney enterprises. VA may need that effort too.

The cost of accommodation and travel is indeed high and something needs to be done to assist our(veterans’/family members/support personnel) ability to participate in these fact finding advisory committees. These are ill gulf war veterans who face barriers physically and financially unable to travel certainly at the cost of travel today and the cost of lodging. Just as Congress initially did not assist the veterans that came forward and eventually did start covering that cost. At the least the VA and DOD could help by letting the survivors and the veterans have access to any DOD/VA air transport, travel funds and to rooms(commercial and or military or unused veteran hospital space)(DOD could provide military shuttle/buses if available). Private non profit organizations need to reach out also to help us in this effort.

The advisory committee must recognize that this group of veterans has considerable neuro cognitive and memory problems that impact the ability to write testimony and to be able to function minimally at home. This group needs assistance in coming to the meetings and needs understanding when there is a requirement to provide written input before we arrive.

I don’t think VA fully understands the Neuro cognitive difficulties that the Gulf War veterans are encountering at all. I can tell you that it makes me tear up when I see how my fellow veterans have deteriorated in mental and social functioning because of the neuro cognitive difficulties alone. I, myself, was an above average professional nurse with a MSN who had been in critical care nursing and on faculty at Nursing Schools with a number of large universities. My decline in ability to function is scary and has cost me my lively hood … my profession and impact my family by decreasing us to a one income family. I try my best to hide it from family and associates but I know the difference and people that know me know the difference. It hurt when I came home from a trip to DC and was trying to help my daughter when she was in elementary school and I realized I was having problems with basic math! After I got her to bed I cried and I am not one to cry easily. My life was destroyed and that impacts on so many levels.

These problems affect the abilities to keep up with financial matters to navigate around our home towns and to function in a normal life much less to work our claims to get help!

I suggest that you consider this when you require written submissions before meetings. I suggest you also take audio/video recordings of the veterans.

I have had veteran’s wives call me to cry on my shoulder for support when they tell me that their husband of decades were caught in the wives’ purses and when asked why they said I couldn’t remember your name so I was looking at your driver’s license! It is like something has caused extreme early Althemziers. It is dismaying to me that VA health professionals have not evaluated the neuro cognitive problems or if they see it they don’t report it. If veterans tried driving trucks for a living they had to quit that job because they would get lost, their driving abilities at night were affected, and they had to have a spouse accompany them to help orient them etc. There are so many example cases and not enough time for all the details. That is why a great deal of our gulf war veterans are not seen at meetings etc they have bunkered down totally!

We hope and pray that this committee sets a full published time schedule, meeting schedule to include place and time and the issues to be discussed at each meeting so that recommendations for short, medium, and long term can be made as the committee continues in its time schedule and that corrective action can start and continue monthly instead of waiting for any 18 months. We also hope that the door is opened to make this advisory committee continue past that 18 months until all issues are addressed, corrective action is taken, and reevaluated for further changes in the future. There needs to be no end date to either advisory committee we must continue until all issues are corrected and reevaluations made. Neither of these advisory committees should be PAPER TIGERS but REAL ACTION TEAMS to Address the needs that were and are unmet and that this is indeed a continuing commitment that needs to be made for the veterans that paid the price and earned the respect and all efforts that can be made each day of the year and for all their remaining time.

I also want to recommend that this ADVISORY COMMITTEE HAVE AN Additional EXPERTS ADVISORY COMMITTEE as the VA RAC GWI has in place. This group might include but not be limited to: a couple of more veteran leaders that have been active on gulf war illness issues, a lawyer with claims knowledge, a physician at least 1 maybe two, and a couple of medical care professionals(nurses), a former military personnel administrative person, and veteran officers that served in the Gulf War with the Army Preventive Med Team. These individuals would be advisors to the main committee.

Overview: The scope of the problem is large with over 1/3 of those that served in the 90-91 having sought VA care/compensation. This is truly a huge number not seen prior to our time in history as referenced by Ross Perot when he testified to Congress. When we came home and started coming forward for help with our dramatically changed health status we were all met with denial that something had truly affected our health, we were called wimps, we were ignored and brushed aside, and we had to deal with the doctors‘ eyes glaze over when you say gulf war illness. In medical terminology-- we were TURFED OUT to Psych just to get us away. That was certainly not the way to treat patients but more devastating is that this is still occurring after 17 years.

We encourage the VA thru this committee’s actions to finally take the Proactive Stance that has been missing to stand up for the Veterans and honor them. Sadly we have already lost to many lives in 17 years and it is time for the truth to be given and the veterans of the gulf war to be truly honored.

This group of veterans was indeed differently they asked for DIAGNOSIS, TREATMENT(the Best), AND FAIR COMPENSATION. We have asked doctors and researchers to find the best diagnostic abilities to be found and to find forward leading treatments for us. We earned this.

We also are aware by standing firm we indeed are still serving our nation. What we encountered in the gulf war of 90-91 was hazardous exposures that could occur to the civilians here or elsewhere, it behooves us to strength the push forward not just for us but for National Security.

To be honored fully it is imperative that the Secretary of the VA and the Administration (presidents current and past) acknowledged us and start with an apology to each of the hundreds of thousands of veterans that have endured and to the families that have lost their gulf war veteran.

It must be acknowledged that these advisory committees that the VA has was the result of the effort of the veterans themselves in desperation to get corrective action initiated. In this case 17 years too late. AS we all know the proof is in the process that is started here today and the actions that follow.

RESEARCH: In the area of Research we want to offer our full support for the VA RAC GWI the committee members are to be complimented in the work they have done and the work yet to be done. The VA needs to support them by using the live video conferencing abilities that it has available so that researchers and doctors and the gulf war veteran patients and their families can learn and share together breaking developments in research findings.

WE ask that you also speak up to help this happen. We ask that the VA fully support the RAC that has been doing historic work with truly some of the best scientific minds in an effort to unravel the complexities of the Gulf War illnesses. We ask that the research efforts be strengthen through this committee’s endorsement, the VA, the DOD, administration, and congress to support the funding requested not just from VA but DOD’s 2/3 commitment that was removed in 2001.

Education and Outreach: It is critically important that we find an effective means of education for the veterans, their families but most of all for the medical personnel and the claims personnel .

The VA Newsletter and the DOD deployment quarterly were mostly filled with propaganda and did not provide the total breathe of information that was available. Then the VA dropped the publication all together. The conferences the VA/DOD were having were also dropped. The guidelines for medical professionals/Drs is so out of date it isn’t even funny and does not come close to addressing items from research or recent findings concerning care and treatment of fibromyalgia and chronic fatigue.

It is reprehensible that the veterans and various service groups had to develop their own information systems in order to try to help the veterans. These were sick and ill gulf war veterans trying to help each other!

Education of the medical staffs was nonexistent. The truth and medical findings were being brought to those staff by the veterans themselves! The staffs were not prepared and were restrained from thinking by the denial of the DOD and the VA policy administrators and even the White House Policy Formation, there is just no way to explain the situation any other way! To say that the gulf war veterans were dismayed and disheartened and angry is a understatement!

When you go in because your health has changed and you seek answers and all they wanted to do was at all cost not get into it….to send you away….to turf you out to the psych because that is what they were encouraged to do. They were not encourage to watch us closely and care for us. It all started with the DOD denying everything and the VA following the lead. I felt sorry for the doctors. They were not given the training or the latitude to address our concerns. The medical care professionals were betrayed by the system too.

An example of this is when I was involved as a coauthor of a peer reviewed medical publication. The Hypercoagulation in gulf war veterans was documented in 2000! When I brought the paper in and my own lab results to my VA in Denver I asked please read this call the physicians and the other authors of the paper and I gave them the phone numbers.

I asked for more diagnostic tests for myself and others. I asked for treatment as proposed by the Doctors that wrote the journal paper.

I begged that they help me and my fellow veterans because as a nurse with the experience I had I knew what hyper coagulation could do to a person’s organs and that it could lead to death! The Doctor refused, I asked again the next visit thinking she needed time to follow up etc….well again I was refused and to make matters worse this doctor a hematologist even offered me a psych consult!

I then found out the lab director at that VA hospital had been an editor of the peer review medical journal that published the study. At that point is when I gave up on trying to get my own care at the VA, I would not subject myself to a system that was not responding to any degree of responsibility. My blood pressure, my whole being could not take that. I decided I only had so much fight to give and that I would continue to put my efforts at the national and international level and use all the tools and resources available to battle the broken system from the head of the multiheaded snake.

It is important to note that the FIBROMYALGIA AND FATIGUE CENTERS OF AMERICA in 12 locations in this country are testing for hyper coagulation and treating it!

Why can’t the VA access the education and share medical care, testing and treatment that is available to civilians?

I know a group of environmental doctors that offered to help in 1991 to the VA Secretary at the time and were turned down! Finally after 17 years one group of these doctors have been granted a research study funding and the small treatment trial will be initiated soon.

There is a former Army physician that is board certified in Anti Aging that is rescuing gulf war veterans that can pay, he is also willing to do whatever he can to help VA but no takers yet.

The break appears to be at the policy level and starts with records still classified and missing records of vaccinations. The exposures we had starting with the vaccines, to chemical and pesticide, DU, oil fire particulates, sand contamination, biological and endemic disease data have been denied and hidden by classification.

The administration must move now to declassify fully the records of what occurred in our war after all it has been 17 years and Saddam has now been removed at a huge cost to this nation. It seems an appropriate time to get that done NOW!

That information disclosure would acknowledge what Price the Gulf War veterans of Operation Desert Storm have paid. This may also be affecting our current OIF veterans and forces. That disclosure could help physicians, researchers, claims personnel to experience the change of attitude needed and to get the knowledge needed to meet the needs we have had and will have in the future. It would also help the doctors know what to treat for and open their abilities to fully evaluate each of us.

We need the doctors and medical care providers to document better in the clinical records what works and doesn’t work and by setting up some basic data collection tools be able to contribute to research efforts and even be a part of that research by highlighting unusual lab findings, diagnostic test results, treatments to consider, documenting possible complications, documenting real complications, and documenting what led to gulf war veterans deaths. This information from the clinical world must be shared with the GWRAC. It would provide invaluable information.

Learn from the errors, make swift corrective actions, plan and think smarter in the future is what we ask.

DECLASSIFICATION IS ESSENTIAL AND SHOULD BE TOTAL to help the surviving Gulf War Veterans! Declassification would allow the doctors to really diagnose and treat us more knowledgeably.

Many of us feel that we have just been placed in the EXPECTANT CATEGORY since we returned home. BUT WE ARE NOT ALL DEAD AND WE NEED YOUR HELP!

Outreach: Education for the veterans and their families is critical! This can only be effectively done if we get all the truth! There are all levels of disability minimal to extreme(critical). The need is massive!

We didn’t have a hotline for gulf war veterans so we gulf war veterans did our own! I took so many calls on suicide attempts. Try doing that with no resources! Try activating emergency response in different states without VA or DOD assistance!

One case we utilized the officer of the day at a military base close to one veteran. The officer on duty was a chaplain. He made the call and sent an ambulance, the veteran was stabilized at the base ER, and then transferred to the closest VA. Later in follow up calls we found out the Chaplain officer had been reprimanded for assisting. WE have activated ambulances to transport attempted suicides to the VA and then find out later the veteran was charged for this financially.

WE have been called upon the deaths of gulf war veterans by the family offering the body for donation for research so that answers for those alive might be benefited but no system was in place especially on weekends! This is when we started asking researchers to give us a protocol so coroners could help but we had no facility to store samples and who was to pay for the expenses incurred. That is why we pushed for the brain bank but we need other banking of other samples too. This information on protocol and the brain bank must become common knowledge to every VA Doctor, nurse, patient, and family member.

We found that coroners that got involved and made statements that it was gulf war related faced retaliation and lost jobs. Just as VA physicians and researchers that had stepped up to the plate faced retaliation also. Outreach to these professionals need to be made and restitution efforts made. You destroyed careers of people that tried to do the right moral and ethical duty for us gulf war veterans.

Was this a cover-up well the facts of retaliation seem to be the truth that answers that question.

You have not reached out to the Operation Desert Storm Veterans and their welcome home was not what we expected when we got to the VA. When we presented with our change in health we were basically told nothing is wrong with you. I am not sure how to describe the feelings, frustration, and anger.

I want to say because my time is limited that it is time that these advisory committee meetings are video-teleconferenced into each VA live with veterans able to be there with the staff members in the VA Auditorium by their home and to be able to comment on the videoconference. But that doesn’t mean you don’t go out to them….it means you do both. We are due for VA outreach that never came for us. And it also speaks to the Education that is needed throughout by all parties.

MORTALITY: WE need the ones of us that have died since 1990-91 to be acknowledged by a true accounting not by numbers but by a true death registry by name, age unit, location in theater and cause of death. This needs to be an openly accessible to all database provided by the VA with a mechanism to also capture those veterans of the gulf war that never went to a VA or had a VA claim file number to put on death certificate. These were individuals that died and should be honored!

Their deaths and mortality data need to be examined in depth. Did their neurocognitive disorders lead to auto and other types of accidents? Interviewing the family members of the veterans is essential not only after a death but during his care at the VA.

The families of those that died outside the VA system must have a way to enter the data to the VA with appropriate paperwork and have assistance to do this.

Nationally death certificates need to identify a veteran by conflict or era served in whether they had a VA file number or not. So a national law needs to be done!

We thank

www.Honor

the Names.com for doing something that the VA should be doing fully! They at least are trying to capture all obituary data and place it online.

We need to hear from their survivors first and be sure they have been adequately cared for and recognized. We hope that this committee will honor them by devoting the next meeting to that task and the VA needs to consider how to immediately help these survivors and veterans as this advisory committee is in process not after a report is filed.

Through this complete review of MORTALITY more can be learned in research and in care for those that still live! It is critically important that this be done because it will help the doctors, health care providers, veterans know what trends to be alert to in order that more effective screening can be done for the veterans ie Cancers…. This should be the proactive approach in regards to both Mortality and Morbidity data!

Morbidity:

REGISTRIES /Data Base for All illnesses that gulf war veterans are experiencing should be ongoing and open on the internet and available to all.

We ask that registries be established for the undiagnosed category, for the diagnosed neurological conditions, for the cancers(all), and all the other diagnosed conditions(every body system). This information needs to be given ASAP by the VA and the process needs to be transparent and open to the public. It is through this method that advances in our diagnosis, care, claims and research efforts to help us can be accomplished fully.

It is a proactive step that the VA can take and does not compromise identity it is statistical data.

Through this information and statistics data base medical care providers can actively monitor the veterans with this additional information to keep reconsidering and updating their physical and diagnostic assessment of each veteran they are assigned to give care.

The patients and family members also can be aware of what warning signs to watch for in regards to the statistics. That is what patient education is all about and this is a starting point for health care providers, patients, and family members. This should not be held from us like a top state secret this is our very lives that we are living and we need the statistics to guide us and the health care professionals.

Note these registries must include the deployed and the non deployed gulf war era veterans. We have non deployed sick either from vaccines or secondary contamination from returning equipment that was not decontaminated.

Health Care:

To get true health care the facts and truth need to be fully known. Retraining will need to be done in a systematical and thorough manner. I encourage that gulf war professionals that served and know the truth at every level be activated in assisting in this endeavor.

Policy will have to be rewritten from the Administration to the VA to all levels of government and be transmitted publicly so that the greatest number are informed. That is the true starting point!

I have had doctors in tears before when they were refusing to do more. I have had doctors that finally get it and watched their reactions and yes their horror at what has occurred. I have had doctors tell me their hands are tied! This is a broken system and needs so many efforts to put it on the right course but it can be done by full knowledge, support in all forms, and true leadership.

I have had doctors tell me thank you for providing information because you provided it I was able to save the gulf war veteran that showed up in the ER last night. This is criminal and unlawful withholding of information that leads to unlawful omission of care!

It is a shame we ill gulf war veterans have had to do this one doctor at a time….and lives have been lost because of it.

I don’t know how but I still have a small bit of hope like a flicker of a fire about to die waiting for the fuel to come to brighten and warm the fire for all of us gulf war veterans.

Care starts with restarting the VA centers that were gulf war veterans referral centers in 1991-5.

We also need to have full Gulf War Veteran Health Care and Integrative Research to Medical Care Centers located with VA hospitals in cooperation with Major Medical Universities that can be operated jointly to transfer medical findings rapidly into medical care for gulf war veterans.

There are at least 129 medical schools and 155+ VA hospitals that need to be considered. We need them in nine locations throughout the country to start. There are 2 risks centers in the upper east coast currently(not counted in total).

WE need one in (Duke Univ.) North Caroline, one in the south east (GA), one at Ohio(Wright State), one in Illinois, one in Colorado, one in Idaho, one in Washington, two in California(LA-San Diego) and (San Francisco) as a starting point. My suggestion is in an attempt to have at least one in North-South and East and West geographical locations that are easily assessable for veterans that will speed the changes in medical care brought on by breaking medical research.

These are need to be linked into a video teleconference network with all other VA hospitals to speed communications and help spread knowledge in changes in care through research.

Their should be one doctor and a team of health care individuals overseeing the overall care of gulf war veterans at each VA hospital. They need to review to see what trends they are seeing and share findings on gulf war veterans at least every two months. They need to consider what health alerts they need to give out to gulf war veterans. For example we find many veterans that get stabilized and then get further exposures to paints, pesticide spraying etc then get much sicker. The health care providers should be forward thinking and send out alerts….things to avoid, things to report to their health care provider, actions that can help once the additional exposure has occurred, and other helpful actions. This certainly has not been happening or even considered for 17 years!

There should be a task force at each VA hospital that includes the gulf war veterans to identify problems, make corrections, and share their insight all the way to the VA headquarters, to this committee and to the VA GWI RAC.

The VA needs to address the need to compile data on vision problems the gulf war veterans are having. It would be normal to expect this to occur with MS, ALS and other neurological problems. And good eye exams can help many times to diagnose other health problems. I suggest that the VA at least allow gulf war veterans to be evaluated by the opthalmologist so base line data can at least be collected , shared, compiled, and reviewed for needs that have not been addressed by VA.

The VA also needs to consider doing the same re for dental assessment needs on gulf war veterans. In the area of eye and dental unless you are 100% you don’t get in and that is wrong we need assessment exams done. The chemical damage could be altering our dental problems ( that gulf war veterans are complaining) and no dentist at VA knows because you haven’t even assessed.

The VA doctors at each VA needs to review their records for the Desert Storm Veterans at their VA and report now and at regular intervals the diagnosed conditions that are occurring and the cause of death of each of the gulf war veterans at their VA hospital. A quarterly mortality and morbidity report on Desert Storm Veterans. These reports need to be compiled at each region and forwarded to VA headquarters, to this committee and to the VA RAC GWI. In this way trends ie Cancers, heart attacks, renal or liver problems etc can be reported as trends to be aware of in Desert Storm Veterans. Through this education, policy changes, health care alerts, and proactive health care screenings can be initiated. This would be an excellent way to start the Operation Desert Storm Task force at each VA and regional VISNS. Of course the information would be shared at those Task Forces and also at in-house medical staff meetings.

This information would also be critical to be shared at each VISNS-regional- claims department for their updates.

Claims.

There is on the committee very knowledgeable VSO claims benefit personnel but yet no lawyer(civilian) that could help with expertise to examine the problems and make valid suggestions.

There is a problem when delays and denials pile up! An example is a very gulf war era veteran that I heard from before I left to come to this meeting. She is very ill. She herself is a paralegal who is very versed in claims and legal processes. She has a great deal of medical knowledge. She has just received her fourth denial and will be homeless soon unless something happens to rescue her.

She is just one example. Every day each of us receive at least one email or phone call for assistance, information, guidance or other referral information so the need is not being met even after 17 years.

Something must be done when a veteran identifies that they are nearing the point of homelessness due to health and claims denial and a process to help those veterans as a high priority has to be initiated!

Remember these veterans have neurocognitive decline in abilities and are physically ill they need direct legal assistance now or we will have more physically ill veterans on the streets. More family disruption and break ups due to this denial and delay will occur. More Suicides will occur.

The burden of paperwork on the sick veteran and the family must be removed. Temporary approvals or financial supplements that cut through the lines and the burden must be implemented now not in months or years. Active Triaging of the cases must be done with supplemental medical personnel or personnel administrative prior service people would be a beneficial step. It may mean reviewing the records and making phone call assessments but something has to be done!

The ability to access care at the VA has to be given until their claims are settled.

Conclusion:

As a 20 yr retired AF veteran of the gulf war and having served as a nurse officer I feel betrayed. I feel that since the war my job and my duty to my fellow veteran patients have never ended! I am ill also but someone of the medical profession and as an officer had to stay involved and fight with all my knowledge and skills and more for our gulf war veteran patients. It s a 17yr war so far, I ask how much longer? The answer is until there is real medical care with the right diagnostics and care using all research that is coming forward.

I have been there as the nurse who was there for them then but it has been 17 years and so many calls at different hours of the day and night. I pray that not only you but every level from the President to the VA to every federal agency, every member and staff of the capitol, and the public hears our desperate call for action. We feel justifiably that we have been deemed the silent expectants of Operation Desert Shield Storm.

I don’t know how but I still have a small bit of hope like a flicker of a fire about to die waiting for the fuel to come to brighten and warm the fire for all of us gulf war veterans. ----------------------------------------------------------------------------------------------------------------

Upcoming Committee meetings are scheduled for September 15-16, and November 3-4, 2008. The September meeting will be held in Washington, D.C. Additional meeting details will be posted here as they become available.

Committee meetings are open to the public and include time reserved for public comments. A sign-up sheet for five-minute comments will be available at the meeting. Members of the public who speak are invited to submit a 1-2 page summary of their comments at the time of the meeting for inclusion in the official meeting record. Individuals do not need to preregister to attend or speak at the meeting. However, when meetings are held at VA headquarters or facilities, all attendees will be required to check in and show valid ID at the security desk.

The Committee welcomes suggestions and information from veterans, physicians, scientists, and members of the general public regarding its mission.

http://www1.va.gov/RAC-GWVI/page.cfm?pg=21

----------------------------------------------------------------------------------

Peake to Hear Their Concerns, Issues

WASHINGTON

-- Veterans who served in the Southwest Asia theater of operations during 1990–1991 will have their own special advocates before Secretary of Veterans Affairs Dr. James B. Peake, thanks to a new advisory committee Peake established to respond to issues unique to them.

The 14-member, independent panel will advise the Secretary and the Department of Veterans Affairs (VA) on the full range of health care and benefits needs of those who served in the conflict.

“Gulf War veterans made an invaluable contribution to national security and peace in a volatile region,†Peake said. “This new panel will ensure that VA benefits and programs adapt to the needs of these veterans, just as our services have adapted for veterans of other conflicts.â€

Serving on the committee are Gulf War and other veterans, veterans service organizations’ representatives, medical experts, and the survivors of Gulf War veterans. Members were selected to provide a variety of perspectives, experiences and expertise.

The committee will be chaired by Charles Cragin, a retired Navy captain, who has had several senior level positions within the federal government, including Acting Under Secretary of Defense for Personnel and Readiness and Chairman of VA’s Board of Veterans’ Appeals.

In January 2002, the Department created an advisory committee to assist VA’s secretary on research into the medical problems of Gulf War veterans. That older committee will retain responsibility for research involving veterans of the 1990-1991 conflict in the Middle East.

This committee’s first meeting will be held in mid-June in Washington, D.C. It is expected to complete its work within 18 months. Committee meetings will be open to the public.

A list of the members of VA’s Gulf War Advisory Committee is attached.

Membership

VA Advisory Committee on Gulf War Veterans

• Charles Cragin, (Chair) of Raymond, Maine. Currently serves a senior counselor for Maine Street Solutions, LLC.
  
  
• Martha Douthit of Ashburn, Va. Surviving spouse of Gulf War Army veteran, member of the Gold Star Wives of America, currently an international trade analyst with the U.S. Department of Commerce.
  
  
• Dr. Henry Falk of Atlanta. Retired rear admiral and former Assistant U.S. Surgeon General. Currently director for the Coordinating Center for Environmental Health and Injury Prevention with the Centers for Disease Control and Prevention.
  
  
• Mark Garner of Lorton, Va. A retired Marine Corps chief warrant officer-three and Gulf War veteran who served as a Nuclear, Biological, and Chemical Defense Officer.
  
  
• Dr. Lynn Goldman of Chevy Chase, Md. Vice chair of the Institute of Medicine Gulf War and Health Study; currently professor of environmental health sciences at Johns Hopkins University.
  
  
• Dr. John Hart of Plano, Texas. Past president of the Society for Behavioral and Cognitive Neurology, currently professor of neurology and psychiatry at the University of Texas Southwestern Medical Center.
  
  
• William (Rusty) Jones of South Riding, Va. Retired Marine Corps colonel, and veteran of Gulf War and Vietnam War.
  
  
• Kirt Love of Crawford, Texas. An Army veteran of the Gulf War, currently serving as director of the Desert Storm Battle Registry.
  
  
• Daniel Ortiz of Whittier, Calif. An Army veteran of the Gulf War, currently serving as department service director with the Veterans of Foreign Wars.
  
  
• Daniel Pinedo of Oceanside, Calif. Marine Corps colonel currently serving as the comptroller for First Marine Expeditionary Force at Camp Pendleton, Calif.
  
  
• Thomas Plewes of Annandale, Va. A retired Army lieutenant general and former
  chief of the Army Reserve. Currently a senior program officer with National Academy of Sciences.
  
  
• Valerie Randall of Savage, Md. A retired Army sergeant first class; currently with the Department of Homeland Security.
  
  
• Edward (Randy) Reese of Washington, D.C. An Army veteran of the Gulf War; currently national service director for the Disabled American Veterans.
  
  
• Steve Robertson of Fredericksburg, Va. A Gulf War veteran who served both in the Air Force and Army National Guard. Currently director of the national legislative commission for The American Legion.
  
  

# # #

In April 2008, the Secretary of U. S. Department of Veterans Affairs established the Advisory Committee on Gulf War Veterans. The purpose of the Advisory Committee is to provide advice to the Secretary on the full spectrum of health care and benefits issues that confront veterans who served in the Southwest Asia theater of operations during the 1990-1991 period of the Gulf War. To carry out these duties, the Committee is expected to assess both the effectiveness of existing benefits and services and to determine the need for new initiatives and/or policies that relate exclusively to this population of veterans.

Our Charter

http://www1.va.gov/gulfwaradvisorycommittee/

Thomas W. Trefts Director of The Unified Veterans Coalition

http://xsorbit27.com/users5/unifiedveteran...ition/index.php

[SgtD6970]

Your post is just to darn long to try and read!!!!

[allan]

Sorry about the lengthy post. But since it came from Denise, I posted all of it for the gulf vets.

[MRRRR5]

Allan,

great info though; i would recommend that you summarize the "BLUF" of a lengthy post like this at the beginning; just my opinion... B)

[Guest Vietnam Tanker]

I posted a copy of this on the info board at the VA Clinic

[jagmedic]

“I will ask them to take a ‘fresh-eyes’ approach in developing their recommendations and work expeditiously to produce a final report within 18-months,” said Secretary Peake to the Advisory Committee on Gulf War Veterans.

Will this guy give Gulf War Vets speciality CLINICS ?

Will he give us a Mobile Clinic to get around the country to Exam Spouses and Families in the Persian/Gulf War Registry ?

Will he ask DoD where the hot spot was in saudia Arabia, so we call be notified about the ALS cluster?

# # #

Advisory Committee on Gulf War Veterans; Notice of Meeting

The purpose of the Committee is to provide advice and recommendations to the Secretary of Veterans Affairs on issues that are unique to veterans who served in the Southwest Asia theater of operations during the 1990-1991 period of the Gulf War.

The meeting will include time reserved for public comments. Individuals wishing to speak must register by contacting Lelia Jackson at (202) 461-5758 or by e-mail at lelia.jackson@va.gov and by submitting 1-2 page summaries of their comments for inclusion in the official record. Public comments will be limited to five minutes each. Members of the public may also submit written statements for the Committee's

review to the Advisory Committee on Gulf War Veterans,

Department of Veterans Affairs, 810 Vermont Avenue, NW.,

Washington, DC 20420.

Any member of the public seeking additional information should contact Laura O'Shea, Designated Federal Officer, at (202) 461-5765.