~*Online WACOC News June 2008*~
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From: DGSaba on 16 Jun 2008 18:27 Women and Children of CFIDS + Men WACOC + M ~* A comment or two*~ A message from Laurie, daughter of long time CFIDS patient and advocate Nancy Kaiser. It is with great sadness for our family and friends to have lost my mom, Nancy to end stages of CFIDS yesterday, June 14, 2008. The last 6 months my mom has declined in health. I was blessed to have moved her close to me and we spent a lot of quality time together. Her illness drastically changed in the last two weeks as she was put in Hospice care. What ever the neurological event was the finally took her is unknown at this point, but we will be finding out the cause of death. To all her friends in the CFIDS community, long term friends from growing up in Olean and to those who were here in Albuquerque, you all were such an important part of her world. Being so disabled, her computer and phone conversations were her lifeline. To our family who live all over the country, it was family bonds that she treasured most. She would have done any thing for anyone if capable. She will be missed by so many. The part you need to know is that she was at without pain in a coma for several days. As I stood and looked at her, I saw peace for the first time in 30 some years. This is difficult for my dad as his health is declining as well. I know my mom is in heaven looking down on all of us right now. I hope you know the impact you made on her life as she shared so many stories with me. My mom was a fighter until the end. She always hoped that her long journey with CFIDS would help someone else. That was her goal. I pray you are all able to take away many good memories of Nancy, known as patient "00". My brother Jim is here to help with lots of things we need to take care of. My mom's wishes were cremation and no public service. No flowers please, but if you wish to honor my mother, please make contributions in her name to : The National CFIDS Foundation, 103 Aletha Rd, Needham, MA 02492-3931. There are so many people I have probably missed. Feel free to forward this to anyone who knew my mom. Feel free to correspond to me by this e-mail address. Thanks to everyone. I will always have my mom to look up to and that I will never forget her legacy. Love, Laurie ~ My prayers are with you and your's, Laurie. Years of exposing what took place concerning ampligen, how it was first made, where, and several years of further released studies -- let's take a closer look at the wisdom and concern Nancy Kaiser shared as the first CFIDS ampligen patient number 00 over the years. Nancy's voice, her journey, her own awakening, her encouragement and dedication has allowed other CFIDS patients to make up their own minds. Nancy had a personal experience with ampligen. She had a right to voice her opinions, even if it meant, warning others. In the USA...will it be up to Congress, as to, what the real name is or the sick and dead patients', doctors', scientists' due to the research presented over the past 20+ years? Who will make the final decision for sick and dying patients in the USA, UK, Europe, Asia, and all other Countries throughout our world? Nancy Kaiser died knowing the truth will prevail. May she be at peace for ever more. My deepest and heart felt condolences to all who, knew, loved, cared and kept Nancy and her loved one's in your prayers, my prayers are with you. I've spoken to Gail Kansky, President and Editor of The National CFIDS Foundation, other's I have emailed and have followed Lauries wishes by letting you know. Nancy never doubted I would share her message world wide. She also knew I wouldn't be able to be at her graveside to say our last goodbye due to my husbands, my immediate family members and my own health issues. In her own way, Nancy's last emails were her way of allowing us to say good bye without actually, saying goodbye. She has supported me through many trying times. Recently, when I shared with her latest test results indicating its not cancer, her messagae was, "Praise God!" Valid research & awareness has allowed many of us to become aware of past and present events of those suffering ME -itis, PPS, MS, FM, CFIDS, CFS, GWI, PTSD, LUPUS, RA, PARKINSON, LYME, Thyroid, Scleroderma, Raynauds, Lymphoma, Bone and Brain Cancer's and so many other diseases. Valid research holds all the answer's. Curable illnesses are one thing, but as so many of us understand it, there is no cure for radiation poisoning. Google: Radiation Poisoning Google: Nuclear Accidents Google: Beyond Nuclear Google: Nothing Depleted About Depleted Uranium Not a one of us world wide have been untouched by nuclear contaminations via our, air streams and ground water. Hillary Johnson discussed Chernobyl via email about our air streams as well as the viruses involved, including, EBV, there are so many other viruses mentioned within our online patient community, including HHV6, STD, and AIDS. My son, as a teenager suffered in the 1980's mononucleosis -- EVB virus and developed ulcertaive colitis. So Far, after many years, 6MP is the only thing between him and surgery to remove a section of his bowel or worse. Recently, his 6MP had to be doubled. I ask for your prayers. At the same time as the outbreak of monocucleosis there was also Kawasaki Disease which affected the younger children. Kawasaki Disease http://www.americanheart.org/presenter.jhtml?identifier=4634 Hillary Johnsons' research is based on truth and it's been proven as such. She has written an addendum to Osler's Web. As I've mentioned once before, I've not yet read her addendum. But I did read: A CFS Interview with RESCIND Founder Tom Hennessy. Why would certain organizations within our online community abuse sick patients such as Hillary Johnson and Tom Hennessy of RESCIND and others? Why did the CFIDS Association of America, (CAA) react to Hillary Johnson's investigations, Tom Hennessy and many other organization's, in the manner's witnessed the past 20+ years by advocates, sick online patient's and other's? These attempts to censor sick patients and or any one posting the truth ~ so ~ others world wide would be able to be more aware, be more alert and be safe are a black mark in CFIDS advocating history, world wide. What has been done is beyond comprehending, at times. Has the nightmare ended for them because of speaking up while sharing their own journey and awakening's? The nightmare has finally ended, for a dear friend and advocate, Nancy Kaiser. I have no problem with Tom Hennessy's message, only his cursing :-) R.E.S.C.I.N.D. http://www.rescind.org Concerning our newsgroups and lists, are you guilty of censoring a sick patients voice? Personal, vulgar, shunning, censoring, and acts of theft attacks took center stage against some who were involved advocating and in clinical research trials who reported their experiences over the past 20+ years. For me, all that has been shared has been an eye opener since 1997. It seems the exposure of certain private and government organizations mentioned, by Hillary Johnson and Nancy Kaiser and many other advocates, do indeed, need to be addressed by our media sources available to us. If the rumor is true that it was Jane Perlmutter of the CAA, Treasurer of the CFIDS Association of America (CAA) and a member of the Long Island Chronic Fatigue Syndrome Association then this too, needs to be addressed . http://www.geocities.com/HotSprings/Spa/4225/ June Perlmutter: Zoom info Business People Information http://www.zoominfo.com/Search/PersonDetail.aspx?PersonID=21169985 I have often thought about Jane Perlmutter ever since I heard the rumor. I pray it is not true. If it is, then why would a CAA member / supporter do such a thing? The FBI has never given me the name of the women located with the computer the death threat originated from which was tracked to a Long Island, NY address. During this time of my life, Nancy Kaiser has been one of the person's within our online community who gave me support and understanding. I will miss her so very much. Our patient online community deserves the truth. CFIDS/ME Patient Memorial List http://www.ncf-net.org/memorial.htm There is no time for not allowing the truth. Our online support communities world wide only desire for all involved to observe over the 4,000 articles of research mentioned and presented. USA Research The National CFIDS Foundation Medical Discoveries (NCF) http://www.ncf-net.org/Discoveries.htm Veteran's United For Truth http://www.vuft.org/ The Facts and the Politics of Myalgic Encephalomyelitis - TCJRME http://www.geocities.com/tcjrme/ Turning The Spotlight on Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalomyelitis R.E.S.C.I.N.D. http://www.rescindinc.org/ Sophisticated Investigation http://www.geocities.com/sezar99q/SOPHISTICATED.html Autism, Gulf War -Myalgic Encephalomyelitis, Vaccines http://www.geocities.com/sezar99q/AutismGWS-ME.html Betrayal By the Brain: Dr. Jay Goldstein http://home.vicnet.net.au/~mecfs/general/goldstein_summary.html Read and or google the following: Osler's Web by Hillary Johnson, Investigative Journalist Perchlorate Dioxin Nuclear Accidents Thanks to those who shared this following link to information via your web sites. I've read and reread and printed out a copy and keep it at my desk. What To Do If A Nuclear Disaster Is Imminent www.ki4u.com/guide.htm Medicare to share data with FDA http://www.newsday.com/services/newspaper/printedition/monday/health/ny-hsfill265703103may26,0,3618073.story Soft hugs & Prayers! Diana Saba Disabled Retired Nurse "What lies behind us and what lies before us, are tiny matters, compared to what lies within us" ~Ralph Waldo Emerson~
From: DGSaba on 24 Jun 2008 11:27 Women and Children of CFIDS + Men WACOC + M ~*A comment or two*~ Happy Summer! June 20th summer began! Thyroid and cancer, O' my... Rev up your search engines: Sodium Dichromate Poisoning Please respond to Congress before July 1. Tell Congress to Protect Medicare Advantage http://capwiz.com/protectyouradvantage/issues/alert/?alertid=11461841&type=CO Heath Care Reform Dr. Coburn Urges Politicians to Put Patients Ahead of Politics http://coburn.senate.gov/public/index.cfm?FuseAction=HealthCareReform.Home GAO finds tax abuse in Medicare program http://coburn.senate.gov/public/index.cfm?FuseAction=LatestNews.NewsStories&ContentRecord_id=a77d7c30-802a-23ad-46ff-08297b75d361&Issue_id= Medical Fraud a Growing Problem http://coburn.senate.gov/public/index.cfm?FuseAction=LatestNews.NewsStories&ContentRecord_id=83b38a6f-802a-23ad-4089-88969f79454d&Issue_id= Washington Waste of the Week http://coburn.senate.gov/public/index.cfm?FuseAction=WashingtonWasteOfWeek.Home CFIDS/ME Patient Memorial List http://www.ncf-net.org/memorial.htm There is no time for not allowing the truth. Our online support community member's world wide only desire for all involved to observe the over 4,000 articles of research mentioned and presented. USA Research The National CFIDS Foundation Medical Discoveries (NCF) http://www.ncf-net.org/Discoveries.htm Veteran's United For Truth http://www.vuft.org/ The Facts and the Politics of Myalgic Encephalomyelitis - TCJRME http://www.geocities.com/tcjrme/ Turning The Spotlight on Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalomyelitis R.E.S.C.I.N.D. http://www.rescindinc.org/ Sophisticated Investigation http://www.geocities.com/sezar99q/SOPHISTICATED.html Autism, Gulf War -Myalgic Encephalomyelitis, Vaccines http://www.geocities.com/sezar99q/AutismGWS-ME.html Betrayal By the Brain: Dr. Jay Goldstein http://home.vicnet.net.au/~mecfs/general/goldstein_summary.html The following web site has been helpful in explaining... What is Fibromylagia? http://www.spineuniverse.com/displayarticle.php/article155.html More later... Soft hugs & Prayers! Diana Saba Disabled Retired Nurse "What lies behind us and what lies before us, are tiny matters, compared to what lies within us" ~Ralph Waldo Emerson~
From: DGSaba on 24 Jun 2008 12:28 Women and Children of CFIDS + Men WACOC + M ps... Thanks to Linda C for bringing these matters to our attention and sharing the links to this informative information. Lyme and Biowarfare http://www.avonhistory.org/bug/l15.htm CDC: Vaccine Study Used Flawed Methods http://www.huffingtonpost.com/david-kirby/cdc-vaccine-study-used-fl_b_108462.html Evidence of Harm http://evidenceofharm.com/VaccineDataLinkReporttoCongressFinal.pdf More later... Soft hugs & Prayers! Diana Saba Disabled Retired Nurse "What lies behind us and what lies before us, are tiny matters, compared to what lies within us" ~Ralph Waldo Emerson~
From: DGSaba on 26 Jun 2008 10:43
Women and Children of CFIDS + Men WACOC + M ~*A comment or two*~ Happy Summer! In the 90's and humid! The four o' clocks are budding so the fragrant flowers will soon appear. All the herbs and veggies are doing great -- the lantana's, clematis, climbing moonbeams and lavender are all doing nicely! Pushing Prescriptions - The Center for Public Integrity http://www.publicintegrity.org/rx/report.aspx?aid=985 US Justice Dept. Investigation of Glaxo-Paxil Widens http://ahrp.blogspot.com/ Type the name of any medication into the Alliance For Human Research Protection's search engine -- this is what's available regarding Cymbalta http://blogsearch.google.com/blogsearch?bl_url=http%3A%2F%2Fahrp.blogspot..com%2F&as_q=cymbalta&submit=Search Medical Evidence Blog http://medicalevidence.blogspot.com/ A message from DSNurse... 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 WLL 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(a)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 VAs auditorium and sit with VA Personnel and be hooked in live and be able to offer their public comments. But that doesnt 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 dont 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 veterans 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 couldnt remember your name so I was looking at your drivers 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 dont 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 committees 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 committees endorsement, the VA, the DOD, administration, and congress to support the funding requested not just from VA but DODs 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 isnt 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 persons 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 cant 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 doesnt 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 didnt 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 doesnt mean you dont 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 dont 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 dont 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 havent 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 dont 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. ~ ~ ~ More later... Soft hugs & Prayers! Diana Saba Disabled Retired Nurse "What lies behind us and what lies before us, are tiny matters, compared to what lies within us" ~Ralph Waldo Emerson~ |