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  #226  
Old Sun Apr 10, 2016, 10:17 PM
Bob Macfarlane Bob Macfarlane is offline
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That is great news for you. I filed my claim in 2004 at the region and was denied. Filed NOD in 2005 and got BVA hearing in 2010 and decision which said my MDS was caused by AO. Region opined in 2010 that MDS was cancer but not malignant in my case. Zero percent.

NOD filed in late 2010. VA sends request for additional information in 2013. I don't respond in a timely fashion so the claim is canceled. In 2014, I find out that the claim is no longer active. VA admits that the request for additional information was sent to a bad address.

VA takes attitude that I had moved and did not provide new address! Not to worry that my wife had lived at that address for 30+ years.

VA reinstates claim and I have BVA hearing on March 10, 2015. As of April, 2016 no one can tell me when I might have a decision.
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  #227  
Old Mon Apr 11, 2016, 11:10 AM
bailie bailie is offline
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I think it helped that I was totally prepared when I had my one appointment. I had a stack (about 4" high) of all my relevant appointments in chronological order and categorized. This information included all of my pulmonary function tests, original diagnosis, one lung resection and all tests after my initial diagnosis. The appointment lasted about 40 minutes. The doctor clearly explained that the appointment was not for any medical advice, but to send to headquarters the necessary information to determine my reason for classification. The "triggering" information was naturally the presumed exposure to Agent Orange in Vietnam, a stem cell transplant, 19 cycles of Vidaza, less than great pulmonary function tests and the fact that I have never smoked and relapse after stem cell transplant. The SCT was the primary reason for my assigned disability but the other supporting data greatly contributed. There all different levels/conditions of MDS that makes it difficult for the VA to use a blanket judgment for everyone with MDS. I was given about seven months to live with my original diagnosis (RAEB-2). Some people live for many years with some forms of MDS.

I still think (my layman opinion) that it is very doubtful that Agent Orange was the reason for my MDS. Exposure to Agent Orange can sometimes cause genetic abnormalities, but so can the hundreds of other chemicals that a person can be routinely exposed during their lifetime. Just this morning on the news it was reported that BPA (cancer causing) has been used in almost all canned foods in the packaging process (100 percent of Campbell's Soups) for the last few decades. I am in contact with most of the people in my Vietnam unit and I am the only person affected with MDS that anyone is aware. Unfortunately, I have had four friends diagnosed with MDS in the last three years. None were in Vietnam. One did smoke until age 45. We all had dissimilar backgrounds. There are so many reasons/exposures that can cause MDS that it is pretty much impossible to narrow the cause to perhaps exposure to Agent Orange. I think it is very generous of the VA to award me this disability.
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  #228  
Old Mon Apr 11, 2016, 11:33 AM
Bob Macfarlane Bob Macfarlane is offline
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Claim

I have NO DOUBT that our MDS was caused by Agent Orange and neither do most of the top hematologists in this country and around the world.

There is no other explanation for our 768 / 100,000 'Nam vets with MDS. Since you are so sure that AO did not cause it, surely you never filed for it.
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  #229  
Old Mon Apr 11, 2016, 01:39 PM
rar rar is offline
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Bob, Your statements do not make sense to me. Can you restate them please.

bailie, I agree with you 100%. No one can exactly pinpoint the caUAE

Last edited by rar : Mon Apr 11, 2016 at 01:45 PM. Reason: change
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  #230  
Old Tue Apr 12, 2016, 12:49 PM
Bob Macfarlane Bob Macfarlane is offline
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Proof?

768 out of 100,000 Vietnam veterans have or had (dead now) MDS. The occurrence in the general population is 3.8 per 100,000. That is not proof but it is pretty staggering.

After a number of delays, there is a study being undertaken by one of the top hematologist at one of the top cancer centers in this country to attempt to establish the link.

Benzene is the primary cause of MDS and yet the VA argues that TCDD contains none. TCDD is 2,3,7,8-Tetrachloro dibenzo -p-Dioxin (2,3,7,8,-TCDD)- - - prettier name for that little bugger is Agent Orange.
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  #231  
Old Tue Apr 12, 2016, 03:31 PM
rar rar is offline
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Thank you for clarifying your post. I may be dense but I still do not understand "Since you are so sure that AO did not cause it, surely you never filed for it."

I agree with the 3.8 number per year. It has been 41 years since the end of the war so it comes to 156 per 100,000 in the general population which is still less than the 768 per 100,000 per Vietnam veterans. This is a fairer comparison. As a matter of curiosity where did you get the 768 number?

For the record I applied for MDS disability today. I am basing it on the benzene exposure I had when I was the company armorer in 1961-2. The person submitting my claim said that I was the second veteran in 10 years of filing claims that had MDS.

I am guessing my claim will be rejected. Someone will have fun reading the 6 inches of medical records that I submitted.

As a matter of curiosity what is your status with regard to MDS and the VA?

Ray
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  #232  
Old Tue Apr 12, 2016, 04:09 PM
Bob Macfarlane Bob Macfarlane is offline
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Talking Wrong

'Nam vets are 768 / 100000 / year and general population is 3.8 / 100000 / year. The numbers are directly from 1. Veterans - a response from the Veterans' Health Administration to a Freedom of Information Act request I filed 2. General Population from any number of sources but in this case the National Institute of Health.

The thing about filing is purely me being snarky. Anytime someone says something about AO causing MDS that person says he doesn't think so. At least in my case the Board of Veterans' Appeals agrees that MY MDS WAS CAUSED BY EXPOSURE TO AGENT ORANGE!!!

I've misspoke because I believed the decision was in 2010 but it was actually in 2009 and this is the link.

http://www.va.gov/vetapp09/files4/0930914.txt

When dealing with the BVA though what is a year or two or three in the scheme of things?
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  #233  
Old Tue Apr 12, 2016, 05:36 PM
rar rar is offline
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I still don't understand. There are 2.7 million boots on the ground Vietnam veterans, about 1% of the total population. If MDS rates are 768/100,000 per year that would be 27*768 or 20,738. Since there are about 12,000 people a year diagnosed with MDS I find the 768 number hard to believe.

It has been shown that benzene exposure raises the risk of MDS by 4.33 times. I find it hard to believe that an agent that causes several hundreds times higher risk can be so well hidden.

I am sorry if I mis interrupt what you are saying.

Ray
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  #234  
Old Tue Apr 12, 2016, 06:01 PM
Bob Macfarlane Bob Macfarlane is offline
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Believe what you wish but for goodness sake don't allow facts to get in the way of what you believe.

I have been at both the US House and Senate and the Institute of Medicine with these facts. I have been fighting for other 'Nam vets but especially their widows since 2004.

Facts are not open for debate. I have help others win the claims and compensation and often my wife has said to just worry about myself.

Mary Anne McCarthy (ret.) Administrative Assistant to the head of the Senate Veterans Affairs Committee gave me the greatest compliment I could possibly have received when she told me years ago "Bob, you are the most hated person at the VA in DC.

Now you go on along believing what you wish but I am finished with trying to explain any further to you. You think you know what you know but you don't know.
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  #235  
Old Tue Apr 12, 2016, 06:10 PM
rar rar is offline
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Thanks for the explanation. I still don't understand the numbers. But that is OK.
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  #236  
Old Tue Apr 12, 2016, 07:19 PM
bailie bailie is offline
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Bob, I (and everyone) appreciate what you are doing. Rar is trying to deal with your "facts" that don't add up. There is no doubt in my mind that Agent Orange has the capability to cause cancer. I was probably exposed to more cancer causing agents from the burn pits than exposure to Agent Orange.

Perhaps you missed a decimal point in your numbers, but using your numbers, there would be more than 20,000 Vietnam vets per year coming down with MDS which probably isn't happening.
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Last edited by bailie : Tue Apr 12, 2016 at 09:27 PM.
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  #237  
Old Thu Apr 14, 2016, 12:50 PM
triumphe64 triumphe64 is offline
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Viet Nam vets are just getting to the key age for getting MDS. Maybe there will be a spike.
Also, many MDS cases go undiagnosed. Maybe the VA doctors are not good at finding it because it is rare.
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  #238  
Old Thu Apr 14, 2016, 01:44 PM
bailie bailie is offline
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triumphe64, thank you for the comment, I think it is a worthy discussion. I think it is important to have accurate facts in the discussion. It is very difficult to understand the numbers that Bob MacFarlane presented and I would like to know how he arrived at those numbers because they are remarkable. It seems difficult to believe that there are about 12,000 people per year diagnosed with MDS in the United States and at the same time over 20,000 Vietnam veterans are being diagnosed per year. That is not possible.

I think in the early stages some types of MDS are difficult to diagnose. In most cases I think a simple CBC often sets of alarms. It did for me. If I would not have had that CBC that led to a diagnosis my condition would have deteriorated within a very short period.

My position is that Agent Orange does cause MDS/leukemia but there are many, perhaps hundreds, of other causes of MDS/leukemia that people might be unknowingly exposed. Then it seems that there are people who seem to be affected who might not have been exposed to any causation.
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  #239  
Old Thu Apr 14, 2016, 04:21 PM
Bob Macfarlane Bob Macfarlane is offline
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One last time

All of you are looking at this as if it is an annual occurrence, which of course, it is not. I have been very consistent in saying "OUT OF THE XXX POPULATION". I have never said otherwise and the FOIA response was for the FY08 - FY10.

MDS is what is known in the medical community as an orphan disease because it is so rare. The Leukemia and Lymphoma Society (LLS) estimates that the incidence in the US of MDS is 4.3 cases per 100,000 in the general population.

In the past three years (FY08-FY10) the Veterans’ Affairs medical system has treated 4,031 cases of out of a population of 800,000 surviving Vietnam veterans. The number 4,031 comes from a Freedom of Information Act request and the 800,000 is the VA’s own statistic. That is 800,000 surviving out of the 2.6 million of us that sat boots on the ground in Vietnam.

Doing the math that is 504 cases per 100,000 or an 11,713% increase in Vietnam veterans over the general population. FOIA statistics also tells us that 30% of the 4,031 are now dead; obviously I am not yet amongst that 30%.

Between FY08 and FY10, there were 6,549 Vietnam “Era” veterans treated for MDS/AML by Veterans’ Affairs facilities but I was solely addressing MDS with the House Veterans' Affair's Committee.

As for the age factor, I was under sixty when first diagnosed and the FY10 was only 35 years after the last Americans left. There is also another interesting anomaly about the disease. As the years past, fewer and fewer decisions are rendered at the BVA covering MDS.

Perhaps as Vietnam veterans age there are less cases of MDS?

Back in 2004, Dr. Judith Karp, Head of Adult Leukemia, John Hopkins, told me to get ready to be Don Quixote because she had tried for years to help 'Nam vets against the VA only to find it was like titling are windmills.

I've battled the VA, the Institute of Medicine and many others on behalf of my brothers and the widows but I never really expected to battle another veteran.

Doubt my math? Go right ahead.

Robert J Macfarlane
Adjunct Professor Advanced Mathematics and Computer Science 40+ years
BS (Mathematics) MS (Mathematics and Computer Science)
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  #240  
Old Thu Apr 14, 2016, 05:27 PM
bailie bailie is offline
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Bob, you are using faulty numbers as pointed out in this recent article from the New York Times. That 800,000 of Vietnam veterans still alive is not correct. Also (your figures) "'Nam vets are 768 / 100000 / year and general population is 3.8 / 100000 / year" are built upon the faulty information. The key two sentences from the article, "In reality, the death rate for Vietnam-era veterans in recent years has been comparable to or lower than that of other men in their age group, according to the Centers for Disease Control and Prevention. Of the men with the age distribution of Vietnam-era veterans who were alive in 2000, about 12 percent had died by 2010, with about 1.5 percent of the survivors projected to die each year since then." This is probably the reason why you have met so much resistance.

How Many Vietnam Veterans Are Still Alive?

By ANDREW GELMANMARCH 25, 2013

The approximate percentage of Vietnam-era veterans who are still alive in 2013 is 75.

Some online estimates suggest that the number is much more stark: Only one-third of Vietnam veterans are still alive, these Web sites say, and the survivors are going fast.

But as Patrick S. Brady made clear in an article for The VVA Veteran, the magazine of the Vietnam Veterans of America, the reality is more reassuring. The rumor illustrates the danger of using incompatible numbers from different sources.
Photo

It was apparently based on an estimate that 800,000 Vietnam-era veterans had died by 2000. That number was reasonable: About 9.2 million Americans served in the military during the Vietnam era (1964-75), so that would mean about 8 percent of them had died and 92 percent were still alive.

The problem arose when someone applied the 800,000 figure to a different denominator: 2.7 million, the estimated number of veterans who actually served in Vietnam, rather than at home or in some other theater. This made it appear that nearly one-third of those veterans were dead in 2000 and that they were dying at a rate of almost 400 a day. That would have meant more than 100,000 deaths a year, or nearly two million between 2000 and 2015 — a path to near-total disappearance.

In reality, the death rate for Vietnam-era veterans in recent years has been comparable to or lower than that of other men in their age group, according to the Centers for Disease Control and Prevention. Of the men with the age distribution of Vietnam-era veterans who were alive in 2000, about 12 percent had died by 2010, with about 1.5 percent of the survivors projected to die each year since then.



A version of this brief appears in print on March 26, 2013, on page D7 of the New York edition with the headline: 75
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  #241  
Old Thu Apr 14, 2016, 05:55 PM
bailie bailie is offline
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The VVA Veteran — March/April 2011


This is another article debunking the "800,000" number of Vietnam veterans still alive.

Not Dead Yet

Patrick S. Brady


Mortality Rates Among Vietnam Veterans

Recently, the Internet has beena wash with dire predictions of the imminent demise of all Vietnam veterans. Both alarmed and suspicious, Vietnam veteran Pat Brady did some investigating.Here’s what he found.

“If you’re alive and reading this, how does it feel to be among the last one-third of all the U. S. Vets who served in Vietnam?” Like a ritual salute, this question has passed from one veteran website to another in the past 18 months, accompanied by a drumbeat of numbers: 711,000 Vietnam veterans died between 1995 and 2000, or 142,000 deaths every year, 390 every day; no more than 850,000 Vietnam veterans remain out of 2.7 million, meaning at least 1.8 million have fallen to the swift scythe of the Grim Reaper; and “only the few” will still be around by 2015. “We died in ’Nam,” reckoned one veteran, “just haven’t fallen over yet.”

This actuarial cadence-count went viral on “Before They Go,” a nine-minute video posted on YouTube by Veterans Appreciation Alliance, a group seeking sponsors and contributions for its Grateful Red, White & Blue Appreciation Tour. One website hailed the video as a “warning that our Vietnam vets are dying off rapidly, and we need to give them a proper ‘Welcome Home’ before they are gone.” Many veterans proved quite ready to believe that their comrades were falling fast to Agent Orange, post-traumatic stress disorder, and suicide.

But others were skeptical. Passing through the blogosphere, the supposed daily death toll of 390 Vietnam veterans sprouted a spurious pedigree, with several websites attributing it to the Naval Health Research Center. This was news to the Center, whose Public Affairs Office called on the makers of “Before They Go” to remove the bogus attribution. The nine minute video disappeared from You Tube by mid-April 2010, replaced by a four-minute version cleansed of the offending mortality figures.

Yet the mournful numbers still pop up all over the Internet. Are they true? Where did they come from? First, we must face the limits of our knowledge: No one knows for sure how many in-country Vietnam veterans are alive. So anyone who tells you he is sure is making it up.

The number living must be measured against a baseline of those who were there in the first place. But no one is sure of that number either, despite a surfeit of surveys and estimates. The Department of Defense kept a consolidated file of those who died in the Vietnam War but not of those who fought it. Encyclopedias, dictionaries, and almanacs of thewar are conspicuously silent about how many actually saw duty in Vietnam.

To make up for the lack of an in-country master list, estimates and surveys have started with figures for those who served worldwide during the Vietnam era, and for those who served in the Vietnam theater, a term that includes Vietnam, its coastal waters, Laos, Cambodia, and sometimes Thailand.

Defining the era presents problems of its own, with Section 101(29) of the U.S. Code for Veterans offering two definitions of the Vietnam era: 1) February 28, 1961, to May 7, 1975, for veterans who served in Vietnam; and 2) August 5, 1964, to May 7, 1975, for those who served elsewhere. These are the same parameters used to determine eligibility for membership in VVA.Adding to the confusion, some estimates treat the Vietnam era as ending not in 1975, but in 1973, the year of the Paris Peace Accords. So different estimates of those who served and those who survive produce different results, varying according to the location of service (Vietnam itself or the Vietnam theater) and time covered (usually starting in 1961, 1964, or even 1965, and ending in 1973 or 1975).

A survey of surveys appeared in the first volume (1994) of the Institute of Medicine’s semiannual studies, Veterans and Agent Orange. Estimates of in-country Vietnam service, the Institute found, ranged from 2. 6 to 3.8 million, with most falling between 2.6 and 2. 9. Estimates for the Vietnam theater ranged from 2.7 to 4.3 million, with 3.4 million the most widely cited figure.

These numbers must be seen against the larger total of those who served worldwide during the Vietnam era, 8.75 million from 1964-73, and 9.2 million from 1964-75. Depending on the estimate, one out of three Vietnam-era veterans served in the Vietnam theater, and four out of five Vietnam theater veterans served in Vietnam itself.

With these estimates in mind, we can start closing in on what can be said about the number of living in country Vietnam veterans. Better figures are available for era veterans than for in-country veterans. The 2000 Census long form, for example, asked about period of service but not place. Estimates for living in-country veterans can be extrapolated from figures for living era veterans.

Setting a benchmark for the year 2000, the U.S. Census Bureau estimated there were 8,380,356 living Vietnam-era (here defined as 1964-75) veterans, about 90 percent of the original 9.2 million, with the death toll near 800,000. The Centers for Disease Control reached a like finding in a Post-Service Mortality Study of 18,313Vietnam-era veterans, half of whom served in country. By the end of 2000, the CDC found, about 91 percent of era veterans were living, aged 46 to 67 in the sample, with a mean of 53; death rates for veterans were lower than for all men in the U.S. through 1998; and in-country veterans suffered 7 percent higher mortality than other veterans. That difference, the CDC said, was “not statistically significant,” was confined to the first five years after discharge from active duty, and was limited to “external causes”—mostly traffic accidents, suicides, homicides, and unintentional poisonings, many of them drug-related.

If in-country Vietnam veterans accounted for about a third of all Vietnam-era veterans, and if they were Dying only slightly faster than the others, then the 800,000 era veterans who died from the 1960s through 2000 should have included fewer than 300,000 in-country veterans. That fact rules out the supposed passing of 711,000 of them between 1995 and 2000 alone, a figure that forms one verse of the Internet litany.

cont. .....
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  #242  
Old Thu Apr 14, 2016, 05:58 PM
bailie bailie is offline
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Continued from the article above ...

Reaching a comparable estimate for the Vietnam theater, the VA Office of Environmental Epidemiology keeps an incomplete list of 3,056,000 Vietnam theater veterans, and counts 349,000 theater veteran deaths through 2001, a count the Office considers 95 percent complete. If four out of five theater veterans served in country and if they were dying only slightly faster than other veterans, then the 349,000 theater deaths should have included 280,000 to 300,000 in country veteran deaths through 2001, an estimate in line with the CDC and Census figures through 2000.

The VA’s Veteran Population Model for 2007 estimates that 8,448,000 Vietnam-era (1964-75) veterans were living in 2000, and 7,526,000 living on September 30, 2010. While 47,000 leaving the military joined the ranks of Vietnam-era veterans during the decade, 969,000 deaths thinned those ranks. Again, if a third of era veterans were in-country veterans who were dying only slightly faster than other veterans through 2000, they should account for 325,000 to 350,000 of the 969,000 Vietnam-era deaths from 2000 to 2010, unless their mortality rate skyrocketed far above the rate for other veterans after 2000.

There is no evidence that it did, and some that it did not. A Current Population Survey by the Census Bureau for August 2009 estimated 7,183,000 living Vietnam-era veterans, including 3,566,000 living Vietnam theater veterans. Compared to other estimates, the era figure seems low, while the theater figure seems high, but the high number may cover a longer period—1961 to 1975—and may reflect inflated self-reporting of Vietnam service. But even allowing for such complications, the survey weighs against any soaring death rate for in-country Vietnam veterans. If three million or more theater veterans are alive, and four out of five of them are in-country veterans, then 2.4 million or more in-country Vietnam veterans should still live, triple the 800,000 rumored on the Internet.

Origins Of A Myth

So, thank God, most in-country veterans are not dead yet. But who started the story that they were? Doomsday dirges do not need footnotes, but mortality statistics do, and the sources cited for these Internet numbers are few and mystifying. One of them, “the Public Information Office,” likely leads to the American War Library. As one blogger warned: “The false number of 850,000 originates from the phony website of the American War Museum, which disseminates much false information for reasons only its manager (it is a one-man operation) might know.”

The blogger misidentified the site. Otis Willie and Roger Simpson of the Public Information Office of the American War Library (not Museum) disseminated the number in a June 7, 2009, posting on alt.genealogy: “The official estimate of Vietnam War ‘survivors’ as of 25May2009 is 831,000.The number of Americans who served in Vietnam between 1945 and 1975 is 3.2 mil. To 2. 7 mil. 2.7 mil. Is the number counted by DoD in 1984 when producing ‘The Vietnam War Service Index.’” While most cyberspace chats have rounded off the number of living Vietnam veterans to 800,000 or 850,000, the American War Library’s more precise number is echoed in a posting by “Still here” on Veterans Benefits Network that regrets “there are only 831,000 of our brothers/ sisters still alive.”

Calling itself “The World’s Largest On-Line Military, Veteran and Military Family Registry,” the American War Library asks: “If you are a Vietnam vet, have you verified that your name is listed in the Department of Defense’s Official Vietnam Veteran War Service Index?” This “official” index, the same one cited in the Library’s posting about 831,000 survivors, is often cited on the Internet as “officially provided by the War Library.” As far as I can tell, this Index is nowhere to be found.

The American War Library seems to be a home business run by Phillip R. Coleman in Gardena, California. Various web postings have warned that “Roger Simpson” and “Otis Willie” are two of dozens of names used by Coleman; that the Library solicits personal information from veterans but does not provide free information about veterans; and that the Library and its many related websites post myriad military stories to attract attention and gain legitimacy. For examples of the warnings, Google “American War Library–exposed” or “American War Library scam,” or seewww.armchairgeneral.com/ forums/showthread.php?t=96622

Statistics are hard enough without phony numbers thrown in. But in the available statistics, we find no evidence that the number of living in-country Vietnam veterans is only 800,000, and strong evidence that it is much higher. Again, by my own amateur extrapolations, fewer than 300,000 in-country veterans likely died before 2000, and a slightly larger number since, adding up to 600,000 or more dead, leaving two million or more alive. So if you’re a Vietnam veteran reading this, how does it feel to stand with the three out of four who are still here and mean to stay for a while?

For information used in this article, I thank Mike Wells of the VA Office of Policy and Planning, National Center for Veterans Analysis and Statistics, and James Messinger, the treasurer of the National Vietnam War Museum.
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  #243  
Old Thu Apr 14, 2016, 08:20 PM
triumphe64 triumphe64 is offline
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800,000 only if you count South Vietnam etc.

Troop Strength

South Vietnam: 850,00
United States: 540,000
South Korea: 50,000
Others: 80,000 plus
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  #244  
Old Thu Apr 14, 2016, 09:07 PM
bailie bailie is offline
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Triumphe64, those are just the numbers for 1968. The accepted number for all of the U.S. troops for the entire length of the war is close to 2.7 million.
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  #245  
Old Thu Apr 14, 2016, 09:47 PM
Bob Macfarlane Bob Macfarlane is offline
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Paid much to discourage other veterans are you? I am an idiot and you are GOD!

When is the last time you supported a veteran and did not try to put one down? When did you last try to uplift instead of trying to put a veteran down? Your MDS was not caused by Agent Orange because you never served in Vietnam?

Your MDS is not worth filling a claim for because your VAST knowledge of hematology shows that you are correct and everyone else is wrong?

Now step up and tell us how you refused to accept anything from Veterans' Affairs - - - unlike the rest of us veterans sucking off the system. You seriously are zero percent disabled (service connected)?

Origin of the myth that Ballie knows anything about anything? BALLIE! Spends its time trying to discourage others and most likely a paid shrill of Veterans' Affairs.
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  #246  
Old Thu Apr 14, 2016, 11:02 PM
bailie bailie is offline
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1) This discussion has nothing to do with encouraging or discouraging veterans. It has everything to do with presenting accurate information.
2) It is debatable whether or not the small amount of time in Vietnam caused MDS or AML to the exclusion of all other carcinogens that a veteran has been exposed during their lifetime. That is why it is difficult for the VA.
3) I consider the VA as a beneficial partner rather than an adversary.
4) I believe from the evidence that Agent Orange is a carcinogen, but it is not the only carcinogen that a Vietnam veteran has encountered.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #247  
Old Thu Apr 14, 2016, 11:11 PM
triumphe64 triumphe64 is offline
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I used another site the first time. It was actually the first google choice. Here is a new one.

2,594,000 personnel served within the borders of South Vietnam
( I January 1965 - 28 March 1973)

http://www.mrfa.org/vnstats.htm
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Dallas, Texas - Age 81 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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  #248  
Old Mon Apr 18, 2016, 09:35 AM
barbara a barbara a is offline
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Personal comment to blog

It is hard and frustrating enough to argue with the BVA ...
I speak only for myself...there were no statistics gathered in the US on MDS until 2002 , no registry, case specifucs, etc...my husband was diagnosed with "tired blood" in 1992..by luck of the draw a country doctor in TX had a friend at MDAnderson, a doc, who had just spent years with WHO studying blood disorders they labeled MDS, doc told Dave he was at early stage of MDS and predicted an 8-10 year life span: David was 46 and lived 7 years +44 days. The BVA denied his claim in 1999 and 5 more times since. Much has been studied about MDS since not focused on cause but diagnosis and treatments.
Like CLL, MDS is due to a bone marrow failure, out of control cell formulation and growth. The "virgin" cell goes rogue and continues to duplicate the error...
Rainbow Agents were used in Vietnam. AO is only 1 of them. Any of them had a negative effect on some humans...Specifically, the Depth of Defense knew AO had negative effects on humans and the environment and they used it: negligence liability in any court. How do you select what illnesses to include for negligence? Tough ?
Diabetes? CLL ? Iscemic heart condition? These are 'popular' conditions with studies, statistics, patients..did AO presumably cause these conditions...?Maybe in another 10 years studies will show the presumably like between MDS and AO.. the VA and Depth of Defense has ceased all research and study reviews for AO illnesses if. Those of us that believe based on current research that there is a connection. We continue the 'fight' for ourselves, our loved ones and all Veterans. We keep it alive. Negative comment, arrogance or pious attitudes are not acceptable by us..keep them to yourself..we don't need to hear them. This is our fight, you don't have to be involved.
Like MDS each claim is individual, I have been researching for more then 15 years. Statistics can be easily manipulated for each cause..I use them scarcely..there are new studies smoking &AO exposure is a combination for AO statistics support this. Familia association with BMF plus AO exposure is a proposed cause for MDS..statistics show this. .
It's a cRap shoot with the BVA..
I volunteer at a VA hospital, they have an individual clinic for MDS specifically. The VIETNAM vets form a concensus AO and MDS go tigether...?
Let's support each other, if you cannot do that keep negativity to yourself and don't "make wrong" another blog member. We belong to this blog to share and support not to win so someone else must lose, to be right so another is wrong..I'm just saying....
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  #249  
Old Mon Apr 18, 2016, 10:15 AM
triumphe64 triumphe64 is offline
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There have been attempts at a registry, but they have met with resistance.

http://www.aamds.org/node/156
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  #250  
Old Mon Apr 18, 2016, 10:32 AM
bailie bailie is offline
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Barbara, I agree. It is important to present the data as accurate as possible and keep personal attacks on other veterans off of this blog/forum. I agree that the VA is working for veterans and not an adversary. Thank you.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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