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Thursday, December 23, 2010

Ben Stillwater -- The VA and Toxins: See No Evil, Cure No Evil

The VA and Toxins: See no Evil, Cure no Evil

Written by Ben Stillwater, Freelance Writer, AsbestosNews.com

(91outcomes.com) - The military medical corps in the various branches have been responsible for some of the great leaps forward in treating battle injuries. The Veterans Administration has tried to match the treatment level provided at military hospitals with long term programs that over the years have met with varying degrees of success. But with the exception of battlefield gas, the military brass and the VA bureaucracy have chosen to act like ostriches over toxics exposure for nearly one hundred years. After every war it has taken years for the VA to acknowledge the impact of toxins in military environments and even longer for them to accept responsibility for treatment.

The Asbestos Epidemic

The 800,000 – plus lawsuits over asbestos exposure are old news today. But when World War II veterans, especially Navy veterans, began to develop mesothelioma and asbestosis thirty years after the war was over, the reaction from the military infrastructure was, “It wasn’t us.” It took the illness of tens of thousands of shipyard workers and Navy veterans who were exposed to asbestos insulation, asbestos sprays, asbestos gaskets, asbestos bearing packing, and the asbestos fabric used for fire protection to convince the VA that there was a problem. Between about 1930 and 1975 every Navy ship commissioned contained tons of asbestos insulation. The military bases and barracks built during that era contained flooring, roofing, ceiling tiles, insulation, joint compound, and cement that were laced with asbestos.

It can still be a challenge for veterans who have developed mesothelioma and who were exposed to asbestos during active duty, to prove to the VA that the exposure occurred during time of service. In the meantime thousands of critically ill veterans were denied treatment for a lethal form of cancer or for asbestosis, which is a progressive, non-curable, respiratory illness that slowly reduces breathing capacity. While most of those veterans are gone, the VA is still often reluctant to treat asbestos related illness as a service-related condition.

Agent Orange

The story of Agent Orange and its impact on Vietnam-era vets has played out on a public stage, with much more press coverage of and commentary on the issue than occurred with asbestos. For an interminable period of time veterans complained about various illnesses and the military command structure was resolute in denying any connection between the herbicides and veteran complaints. It’s been a very slow turn to the situation today, when the VA provides volumes of information on Agent Orange-related illnesses and health issues. The lawsuits started in 1979.

In 1983 as the result of a class action lawsuit, several chemical companies involved with the manufacture of Agent Orange set up a $180 million trust fund to pay damage claims filed by veterans who could claim “total disability” as the result of exposure to the herbicides. However the guidelines for claim recognition, the requirements for proof of illness and the window of opportunity for filing those claims led to fewer than 50,000 paid claims. The lawsuits have continued with no real civil restitution for the additional hundreds of thousands of veterans who may have been exposed, but the VA has slowly come to terms with the health damage that Agent Orange did to an entire generation of combat veterans. In 2003 the acknowledged link between Agent Orange and chronic lymphocytic leukemia; other diseases have followed.

Gulf War Syndrome

This generation’s battlefield poison has taken less time for recognition from the VA, but only because the number of impacted veterans is so high in relation to the number of men and women who served. As with Agent Orange, there is a collection of health problems that initially defied diagnosis as to cause. But the fact that those health problems exist is unmistakable; as this website notes over a third of the veterans who served have developed significant health problems.

The people who have gravitated to this website and certainly those who maintain it know much more about the Gulf-related health problems and their causes than we do. We can’t contribute to the body of knowledge on Gulf War Syndrome, but we can draw some parallels with previous wars, previous classes of veterans and previous responses from the military. In the case of all three wars, primary exposure to toxins was respiratory in nature. Protective measures were inadequate or nonexistent.

That’s not entirely a shortcoming of planning or logistics; in some cases such as with asbestos the danger was not widely acknowledged. What has been consistent, it seems, is the struggle to get VA recognition of and treatment for the health problems generated in these various war theaters. Sure, the health problems have been unusual, or difficult to link to a cause, but the conditions that veterans were exposed to were also unusual. Toxins cause all sorts of problems; multiple toxins cause multiple problems. Most recently the concern among Gulf War veterans has been the authorization of funds for research. A decade’s worth of tangible health problems should be a pretty good basis for clinical studies. Inertia in the VA has become an American military tradition.

Article Source:

Ben Stillwater is a freelance writer for Asbestos News, an information and news resource on the risks and dangers associated with high levels of asbestos exposure, and the related illnesses that arise from such exposure.  Ben prepared this article for 91outcomes.com as a special service to Gulf War veterans.

Christmas Message from VA Sec. Shinseki

A Christmas Message

From Secretary of Veterans Affairs Eric K. Shinseki

WASHINGTON (Dec. 22, 2010)-- The second year of our declared
independence found General George Washington's Continental Army encamped
at Valley Forge, Pennsylvania.  In the week before Christmas of 1777,
more than 12,000 poorly-clothed, hungry and near-frozen American
soldiers were huddled against a brutal winter, enduring the numbing cold
as disease ravaged their ranks.  As many as 2,000 of them did not
survive Valley Forge.

General Washington wrote that, "unless some great and capital change
suddenly takes place. . . this Army must inevitably. . . starve,
dissolve, or disperse, in order to obtain subsistence in the best manner
they can."

Despite these bleak conditions, the fighting men of the Continental Army
lifted their own spirits, located much needed supplies and took to
training with determined vigor. They honed their basic fighting skills,
learned new tactics, preserved their dwindling strength and disciplined
themselves for the difficult campaign that would follow.  It was an act
of sublime courage and determination.  Six months later, the Continental
Army marched out of Valley Forge fit and ready, stronger and more
cohesive as a fighting force, and went on to seize American
independence.

Since that winter, American patriots in an unbroken line have found
themselves on duty during the holiday season each year.  Our freedom and
security as a nation has required it.  So as Americans and their
families gather to celebrate these holidays, let us remember the men and
women, who sacrifice so much for our privileges, comforts and
well-being.  They are away from their own families, standing watch for
us on freedom's distant frontiers.  We salute their valor, past and
present, and we pray for them and our Veterans, who have so selflessly
given us the gifts we enjoy this holiday season, as we have every season
since 1775.

I offer my warmest best wishes for a blessed and joyous holiday to all
our serving military, our Veterans, all of their families, the survivors
of the fallen, and the members of our Veterans Affairs family, who are
privileged to serve them.  May God bless each and every one of you, and
may God continue to bless this wonderful country of ours.  Merry
Christmas.

Wednesday, December 22, 2010

President George H. W. Bush Invites Desert Storm Veterans to Special Bush School Event Marking 20th Anniversary of Gulf War
 
Rare Gathering of Bush 41 Foreign Policy Team, Foreign Dignitaries at Texas A&M Next Month to Look Back at the Liberation of Kuwait
COLLEGE STATION, Texas, Dec. 21, 2010 /PRNewswire/ -- President George H. W. Bush today released a video inviting all veterans of Operations Desert Shield and Desert Storm to a special Gulf War retrospective that the George Bush School of Government and Public Service is hosting next month, on January 20, 2011, on the campus of Texas A&M University.  The highlight of this special milestone event will be a rare roundtable discussion between the key members of the Bush 41 foreign policy team about the historic events that led to the liberation of Kuwait.
The presidential invite video can be seen at http://bush.tamu.edu/scowcroft/, and all interested veterans of the first Gulf War are invited to register to attend at http://gulfvets.questionpro.com by 5:00pm on Monday, January 10, 2011.
SCRIPT FOR PRESIDENT BUSH-GULF WAR VET INVITE VIDEO:
Some two decades ago, you answered the call to duty and helped spearhead an unprecedented coalition of nations determined to reverse Saddam Hussein's unprovoked invasion of neighboring Kuwait.  Your service in uniform during the course of Operation Desert Shield / Desert Storm did more than eject the invaders and uphold international law.  Your courage, honor and selflessness also helped unite and inspire our Nation and heal the wounds of Vietnam.
It was, without a doubt, a great honor to serve as your Commander-in-Chief.
Next month, on January 20th, the George Bush School of Government and Public Service will convene a rare gathering of key players and distinguished guests at Texas A&M University to reflect on those momentous events that culminated in the liberation of Kuwait.  As someone who contributed much to that historic achievement, I hope you will accept this personal invitation to attend this special event as well.
If you can attend, we look forward to seeing you on the 20th.
If, however, you cannot join us, I hope you will once again accept my heartfelt gratitude and respect for helping the United States and our allies write one of history's noblest and most hopeful chapters.
Thank you for your service.
The distinguished participants in this rare event on January 20th to mark the beginning of military operations to liberate Kuwaitare scheduled to include:
His Highness Sheikh Sabah Al-Ahmed Al-Jaber Al-Sabah, The Amir of the State of Kuwait
His Excellency the Deputy Prime Minister and Minister of Foreign Affairs of the State of Kuwait Sheikh Dr. Mohammad Sabah Al-Salim Al-Sabah
The Honorable Richard B. Cheney, former Vice President of the United States
The Honorable J. Danforth Quayle, former Vice President of the United States
The Honorable James A. Baker, III, former Secretary of State of the United States
The Honorable Colin L. Powell, former Secretary of State of the United States
The Honorable Brent Scowcroft, National Security Advisor to Presidents Gerald Ford and George H.W. Bush
General (Ret.) Walter E. Boomer, United States Marine Corps
Ambassador Ryan Crocker, Dean of the George Bush School of Government and Public Service

Members of the general public are also invited to attend and may register for tickets by calling the Texas A&M UniversityMemorial Student Center at (979) 845-1234.  For more information, please go to:  http://bush.tamu.edu/gulfwar/
ABOUT THE GEORGE BUSH SCHOOL OF GOVERNMENT AND PUBLIC SERVICE
Opening its doors on the campus of Texas A&M University in 1997, the Bush School today ranks 22nd among public universities for public affairs programs.  The School educates principled leaders in public service and international affairs, conducts research, and performs service.  The Master of Public Service and Administration and the Master's Program in International Affairs are the two academic cornerstones of the School.  
In addition, the Bush School offers certificate programs in Homeland Security (online), Nonprofit Management (in-residence) and Advanced International Affairs (online or in-residence).  Distinguished, multidisciplinary faculty members are national and international leaders in their fields, and the School is home to the Institute for Science, Technology & Public Policy; the Mosbacher Institute for Trade, Economics, and Public Policy; and the Scowcroft Institute of International Affairs.
SOURCE George Bush School of Government and Public Service

Tuesday, December 21, 2010

Seattle Area 1991 Persian Gulf War Veterans Needed

Paid Research Volunteer Opportunity: Seattle VA study examining mindfulness-based intervention for Gulf War Syndrome.

Call Michelle at 206-277-1721.

Location: VA Puget Sound - Seattle

Saturday, December 18, 2010

FY11 VA, DoD Funding Remains Unclear

Written by Anthony Hardie, DAV-Wis. Special Assistant

(davwi.blogspot.com)The U.S. House of Representatives today voted to fund the federal government into next week, buying time for the current lame duck Congress to seek a compromise effort to decide FY11 funding for the entire federal government.

At stake are all twelve FY11 appropriations bills – including the Defense (DoD), and Military Construction and Veterans Affairs (MILCON-VA) bills -- which both houses of Congress have been seeking to roll into a single bill. 

The House has already passed a Continuing Resolution (CR), which, if passed by the U.S. Senate would fund the federal government at current FY10 levels.

Meanwhile, the Senate has been working on a separate, omnibus appropriations bill.   However, Senate Republicans have been successful in using a variety of delaying tactics that to date have prevented the Senate from passing even a single FY11 spending bill.

At particular stake for veterans are the VA spending bill and key measures, including Congressionally directed military medical health research, in the DoD spending bill. 

The current Congress ends on January 3, 2011, when the House majority will shift to Republican control.  The Democrats’ control of the Senate will be retained, albeit with a smaller majority than is currently held.

According to The Hill, one of two leading Capitol Hill daily newspapers, House Republicans want to roll federal spending back to FY08 levels. 

The New York Times used even stronger language, calling the current impasse a “collapse” into “partisan chaos.” 

According to the Times, “Aides said that behind closed doors, White House officials and some Democratic lawmakers were still trying to strike a deal to finance the government through September. But the officials said it was much more likely that government financing would be extended only into February or March.”

With all the twists and turns in Congress over the last week, the ultimate outcome is anyone’s guess.

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SOURCES: 

Friday, December 17, 2010

LUNG CANCER ALLIANCE REACHES OUT TO VETERANS, VETERANS HEALTH CARE PROVIDERS

Pledges Continued Support to Reduce Lung Cancer Mortality Among Veterans

Respiratory symptoms a frequently reported symptom among Gulf War veterans; CT screening may be important for some veterans

Written by the Lung Cancer Alliance

Washington, DC—Lung Cancer Alliance (LCA) salutes the nation's 21.9 million Veterans who have so nobly served our country and pledges to continue to make the high incidence of lung cancer among Veterans one of its highest priority issues.

Admiral T. Joseph Lopez, USN (Ret.), a member of the LCA board and only the second admiral in the Navy to rise to a four star rank from direct commissioning from the enlisted ranks said, “Lung cancer kills more Americans and Veterans than all other major cancers combined and it is attacking our Veterans with a higher frequency than our civilians, and now that we have incontestable evidence that early detection with CT screening can save lives, we simply must bring this benefit to our Veterans as expeditiously as possible.  We can do no less.”

Admiral Lopez recommends coordination between the VA and DOD in identifying those at highest risk and developing a comprehensive program of screening and early disease management.

“If we do this right and integrate CT screening for those at high risk into our Veteran and Military healthcare system  in an efficient and cost effective way,  we can set the standards for the civilian population and not only extend life, but save lives,” he said.

“What we cannot do is ignore this. I believe that screening should be our first step and the optimum choice to save and extend life for potential lung cancer victims in our Veteran community,” he said.

One of the first studies to document disparity in lung cancer incidence and mortality was carried out by the VA in 1987 and indicated that former Marine ground troops in Vietnam died of lung cancer at a 58% higher rate than marines who did not serve in the war.  

According to the most recent U.S.Census update, 35% of veterans today are from the Vietnam era.

Last week, the National Cancer Institute announced the results of a large, 53,000 person, eight year civilian study which showed that screening a high risk population with CT scans can reduce lung cancer deaths by 20%. 

LCA President and CEO Laurie Fenton-Ambrose said: “Veterans deserve our deepest gratitude for their extraordinary sacrifice and unyielding protection of our freedoms. We can help express that by moving quickly to bring the benefits of CT screening to those who are at high risk for lung cancer.”

Lung Cancer Alliance, www.lungcanceralliance.org, is the only national non profit dedicated exclusively to providing patient support and advocacy for those living with or at risk for lung cancer.  Lung Cancer Alliance is committed to reversing decades of stigma and neglect by empowering patients, elevating awareness and changing health policy.

To learn more, please click here to download the 2009 Lung Cancer and Veterans Fact Sheet (pdf).

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SOURCE:  http://lungcanceralliance.org/news/2010-veterans-day.html

Wednesday, December 15, 2010

Senate: $11.8 million for Gulf War related health research in Omnibus

 

Written by Anthony Hardie, 91outcomes

(91outcomes.com) - According to a key staff member in the office of U.S. Senator Bernie Sanders (I-Vt.), a longtime, leading champion of Gulf War Illness treatment research and other Gulf War related efforts in the U.S. Senate:

Here is what I found in the most recent FY 2011 Omnibus DOD Appropriations currently under consideration. 

Provides $8 million for the Peer Reviewed Gulf War Illness Research Program and $3.8 million for the ALS Therapy Development Institute Gulf War Research Project.

This will ensure continued funding at this year’s level, a wonderful outcome that is even more exceptional given the current challenges facing a lame duck Congress trying to get a lot done in a matter of days left before the end of the year.

And, General “Mic” would probably have been pleased to see this continued, designated funding for Gulf War related ALS funding.

So, in total, it appears highly likely that the FY11 funding for Gulf War related research in the CDMRP will be at $13.8 million, as described above.  Excellent news!

And, according to another key Hill insider from one of the leading veterans service organizations on this issue:

We have no influence on the current funding levels (they have been set by CBO and will not be impacted).

Putting all of our energy into planning a concerted effort to influence the next Authorization funding cycle will be a much more worthy endeavor.

In everyone’s opinion [on the Hill, this year’s GWI funding level] is set in stone at this point.

As noted in the 91outcomes’ earlier article, the House version already had a provision ensuring that DoD funding continues, for the most part, at FY10 levels.  As such, this includes $8 million for the peer reviewed $8 million Gulf War Illness research program.

And, if the Senate should also change course from the proposed “omnibus” appropriations act and move to a “clean” Continuing Resolution like the House has already passed, this will also result in the same funding outcomes for CDMRP Gulf War related health research.

So, good news all around!

NEXT YEAR:

Now is the time to begin thinking about preparing for a concerted effort in the next Congress to seek increased funding for DoD-Army-CDMRP GWI research. 

Given the possibility of new inter-agency, inter-institution research consortiums being funded, having a coordinated message by all organizations and individuals contacting Congress will be of critical importance. 

WHAT NOT TO DO TODAY:

Fragmented messages and random calls by individuals not really clear on what it is for which they’re asking has the strong potential of derailing efforts. 

Anything perceived by members and staff in Congress as having a lack of clear unity on a particular issue -- like CDMRP GWI funding -- can lead to lots of calls and confusion and result in that particular issue – like CDMRP GWI funding -- to be left in the “too hard to do” category and left off from funding entirely.

And, the current “CR” and omnibus appropriations bills do not contain “line items” for these research programs – they’re mostly “clean” bills that simply say to continue funding across the board at last year’s levels.

This also means that there is little if any possibility of changing funding from last year’s levels.

WHAT TO DO TODAY:

So for now, individuals interested in contacting their members of Congress should simply say, “thank you” for the continued funding at this year’s level for all programs, including the DoD-Army-CDMRP peer reviewed Gulf War Illness research program. 

WHAT TO DO AFTER JANUARY 3RD:

Stay tuned here on 91outcomes for updates on concerted efforts in the next Congress, which begins in January. 

It will be important that Gulf War veterans speak with one voice on these critically important issues, particularly with the possibility of a need to fund consortiums with FY12 funding.

Friday, December 10, 2010

Legislative Update: Current Status of DoD Gulf War Illness Research Funding Remains Volatile

 

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) – Just like last year, monitoring Congressional appropriations actions for the FY11 peer reviewed Gulf War Illness (GWI) research program administered under the Congressionally Directed Medical Research Program (CDMRP) and efforts to ensure the program’s funding success remain highly challenging. Gulf War Illness Program Booklet

As of today, it appears that both House and Senate actions suggest final GWI CDMRP funding for FY11 might be at $8 million, the same level as FY10. However, it should be noted that the situation continues to change rapidly. As always there are no guarantees until the entire Congress sends a final bill to the President.

Continued careful monitoring, combined with veterans advocates and organizations at the ready to contact key members of Congress, will be required.

House

On Wednesday, December 8, 2010, the House narrowly passed by a vote of 212-206 a Continuing Resolution (CR) that provides -- with various unrelated exceptions -- continued FY11 appropriations at FY10 levels, through September 30, 2011.

Under the CR, funding for the GWI program administered by the CDMRP reportedly would be retained at the FY10 funding level of $8 million.

Thirty-five House Democrats sided with 171 House Republicans in voting against the CR, while Eight Democrats and eight Republicans did not vote. This deep division suggests that future prospects for a final omnibus appropriations bill after Senate and conference action may also be challenging.

Senate

The Senate appropriations committee’s FY11 Defense appropriations act report language, which provides detailed funding by line item, directs $8 million for the Peer Reviewed Gulf War Illness Research Program.

The funding was requested in a letter by Senators Sanders, Bond, Feingold, Kerry, Tester, Schumer, Leahy, Durbin, Burris, Brown, Boxer, Snowe, and Kohl.

The Senate bill passed out of committee on September 16, 2010 by an 18-12 vote. Like all the other FY11 appropriations bills, the defense appropriations bill was not considered by the full Senate. However, it may very well remain a guide for future Senate action as discussed below.

Under the report accompanying the Senate bill, total appropriations for the military medical research programs currently operated by the CDMRP would be $358 million. In addition to the GWI appropriation, $150 million would be designated for peer reviewed research on breast cancer, $10 million for ovarian cancer, $80 million for prostate cancer, $60 million for psychological health and traumatic brain injury (TBI), and $50 million for the multifaceted peer reviewed medical research program (PRMRP).

FUTURE PROSPECTS

It is currently expected that the Senate will combine the House’s CR into a Senate omnibus appropriations bill. Any action must be completed by the end of the current Congress on January 3, 2011.

Additionally, the FY11 National Defense Authorization Act (NDAA) remains an unknown variable in the legislative equation. It remains unclear whether or not the NDAA will pass before the current Congress ends and what impact, if any, an enacted NDAA might have on the CDMRP’s GWI research program.

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


Looking Back at Last Year: Who to Call

Last year, retaining funding for the Gulf War Illness research program was, as usual, extremely challenging for the handful of veterans advocates and organizations involved.

Initially, the Senate version of the FY10 Defense Appropriations Act lumped Gulf War Illness under the Peer Reviewed Medical Research Program (PRMRP), a catch-all that included more than two dozen conditions including GWI and funded at just $50 million. While the PRMRP restricts research to the listed conditions, there is no guarantee that research will be funded for any particular condition from among those listed.

Initially, the House failed to include funding for the GWI program at all.

However, as the bill went back and forth between the House and Senate, advocacy efforts resulted in amendments to the final bills in both chambers and final FY10 GWI funding at $8 million.

A last minute save on October 1, 2009 by Sen. Bernie Sanders (I-Vt.) and four of his colleagues amended (SA 2559) the Senate’s bill to include an amendment that would have appropriated $12 million for the GWI program. Those Senators included Robert Byrd (D-W.Va.), Russ Feingold (D-Wis.), Dick Durbin (D-Ill.), and Sherrod Brown (D-Oh.).

And, a December 11, 2009 letter by Rep. Dennis Kucinich (D-Oh.) and 25 other Members of Congress called for the conference committee to fund the CDMRP’s GWI research program at the Senate’s $12 million level.

Ultimately, the conference committee set final funding for the FY10 GWI program at the original, lower House level of $8 million. Both the House and Senate agreed and the final Defense funding bill was enacted by the President.

GWI research supporters Sanders, Durbin, and Brown remain in the Senate.

However, Byrd died on June 28, 2010 and is being succeeded by former West Virginia Governor Joe Manchin (D-W.Va.). Feingold was defeated in the November 2010 election and is being succeeded by Ron Johnson (R-Wis.), a Tea Party favorite.

GWI research funding supporters who signed onto the December 2010 Kucinich letter included the following. Of the 21 who remain in Congress, only four are Republicans, who will hold the majority in the House beginning January 3, 2011.  
  • Rep. Tammy Baldwin (D-Wis.)
  • Rep. Shelley Berkley (D-Nev.)
  • Rep. John Boccieri
  • Rep. Corrine Brown (D-Fla.)
  • Rep. Henry Brown, Veterans’ Affairs Health Subcommittee Ranking Member
  • Rep. Dan Burton (R-Ind.)
  • Rep. Steve Buyer, House Veterans’ Affairs Committee Ranking Member
  • Rep. John Conyers, Jr. (D-Mich.)
  • Rep. Bob Filner (D-Calif.), House Veterans’ Affairs Committee Chair
  • Rep. Charlie Gonzalez (D-Tex.)
  • Rep. Raul Grijalva (D-Ariz.)
  • Rep. Luis Gutierrez (D-Ill.)
  • Rep. John Hall
  • Rep. Rush Holt (D-N.J.)
  • Rep. Dennis Kucinich (D-Oh.)
  • Rep. Steve LaTourette (D-Oh.)
  • Rep. Frank LoBiondo (R-N.J.)
  • Rep. Jim McGovern (D-Mass.)
  • Rep. Michael Michaud (D-Maine), Veterans’ Affairs Health Subcommittee Chair
  • Rep. Gwen Moore (D-Wis.)
  • Rep. Collin Peterson (D-Minn.)
  • Rep. Mike Quigley (D-Ill.)
  • Rep. Janice Schakowsky (D-Ill.)
  • Rep. Patrick Tiberi (R-Oh.)
  • Rep. Timothy Walz (D-Minn.)
  • Rep. Don Young (R-Alaska)
----------------------

FY11 PRMPR

PRMPR research areas in the Senate bill would include the 32 conditions listed below. Four that are particularly relevant to Gulf War veterans are highlighted. The House CR would retain the list the same as in FY10. It should be noted that the final outcome remains indeterminate.
  1. amyotrophic lateral sclerosis (ALS),
  2. autism,
  3. blood cancer,
  4. chronic fatigue syndrome,
  5. chronic migraine and post-traumatic headache,
  6. dental research,
  7. drug abuse,
  8. epidermolysis bullosa,
  9. epilepsy,
  10. fragile x syndrome,
  11. inflammatory bowel disease,
  12. interstitial cystitis,
  13. kidney cancer,
  14. lupus,
  15. melanoma,
  16. mesothelioma,
  17. multiple sclerosis (MS),
  18. neuroblastoma,
  19. neurofibromatosis,
  20. osteoporosis and related bone disease,
  21. Paget's disease,
  22. pancreatitis,
  23. Parkinson's,
  24. pediatric cancer,
  25. pheochromocytoma,
  26. polycystic kidney disease,
  27. post-traumatic osteoarthritis,
  28. scleroderma,
  29. social work research,
  30. tinnitus,
  31. tuberous sclerosis complex, and
  32. vision research.
----------------
SOURCES:

§ FY11 House Continuing Resolution (CR) for combined FY11 appropriations: H.R. 3082 [Would fund GWIRP at $8 million]

§ Senate FY11 Defense Appropriations Act, S. 3800 [Would fund GWIRP at $8 million]

§ Senate FY11 Defense Appropriations Act Committee Report, S. Rpt 111-295 [Would fund GWIRP at $8 million]

§ FY10 National Defense Authorization Act (NDAA), PL 111-84 [Authorized GWIRP at $12 million]

§ FY10 Defense Appropriations Act Explanatory Statement (essentially the conference report), p. 367 [Funded GWIRP at $8 million]

Monday, December 6, 2010

National Survey Finds Gap in Doctor-Patient Communication

 

Editor’s comment:  This study captures the experience of many ill Gulf War veterans, who, at best, have frequently had their symptoms poorly understood by clinicians due to mixed and flawed VA and DoD messages about Gulf War illnesses, and, at worst, outright ignored our discounted.

Recognizing doctor-patient communication as a serious issue in treating Gulf War veterans’ illnesses is a key step to advancing effective treatments for Gulf War veterans.

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

Written by Elizabeth Weise, USA TODAY

Dr. Megan Wills Kullnat, a fourth-generation physician, communicates with a new patient at her pediatric practice.

Dr. Megan Wills Kullnat, a fourth-generation physician, communicates with a new patient at her pediatric practice.
 

(USA TODAY) - Doctors and patients alike say that when they communicate well, healing goes better, and it can even make the difference between life and death.

But a national survey of doctors and hospitalized patients finds that, in reality, effective communication often is sorely lacking.

Only 48% of patients said they were always involved in decisions about their treatment, and 29% of patients didn't know who was in charge of their case while they were in the hospital.

"That's terrible," says Beth Lown, medical director of the Schwartz Center for Compassionate Healthcare at Massachusetts General Hospital, which commissioned the survey by Marttila Strategies in Boston. These patients "are orphans" in the hospital, she says.

Eighty-one percent of patients and 71% of doctors agreed communication made a difference in "whether a patient lives or dies," according to the survey of 500 doctors and 800 patients.

"So there's a disconnect between what people say they want and what's happening," says Gregory Makoul, chairman of the American Academy on Communication in Healthcare.

Emphasis on better communication has increased in recent years as the medical community has become more aware of its effect on patient healing. Since 1995, U.S. medical students have been required to get training in communication skills. And in 2005, the United States Medical Licensing Exam began to include testing on interpersonal and communication skills.

Communication skills and high patient-satisfaction scores can give hospitals a competitive edge as well as reduce malpractice claims, says Debra Roter, a professor at Johns Hopkins University in Baltimore.

SOURCE:  USA TODAY

Thursday, December 2, 2010

Gulf War Illness Medical Treatment Research Funding Panel Meets Today

Opening Moment of Silence Recognizes Severity of Gulf War Illness, Impact on Gulf War Veterans Two Decades After War

Written by Anthony Hardie

(91outcomes.com) – Today, the integration panel of the Congressionally directed Gulf War Illness Research Program (CDMRP is a U.S. Department of Defense military medical research  funding program) will meet in the Washington, DC area to make its final determinations for funding approximately $8 million in Gulf War Illness research proposals.

The program is focused on treatments and research that will lead to treatments in order to improve the health and lives of Gulf War veterans of the 1991 Persian Gulf War.

The funding, appropriated each year by Congress, in contained in the annual Defense authorization and appropriations acts.  This year’s defense authorization bill for has become the subject of news and controversy for several of the proposals it contains, though the media has made no mention of the Gulf War Illness research funding authorization it is believed to contain.

Proceedings of the panel are not public at this stage because the information being discussed includes proposals detailing proprietary intellectual property of the researchers and research institutions involved.

The funded proposals will be announced in the upcoming months, after they have been funded and contracts to perform the proposed research have been completed. 

It is customary for each CDMRP panel to begin with a “Moment of Silence”.  Having been given the honor of making today’s “Moment of Silence,” below is what I will be saying before the scientists, medical doctors, Gulf War veteran “consumer reviewers” and CDMRP staff and contractors begin this morning.

In recognition of the 250,000 veterans of the 1991 Gulf War who remain disabled by chronic multi-symptom illness better known as Gulf War Illness, may God bless these efforts, all the researchers who have worked so hard to develop proposed solutions to help improve the health and lives of Gulf War veterans, and the CDMRP staff, contractors, and reviewers, and the veterans all involved hope to help.

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

MOMENT OF SILENCE DEDICATION – Anthony Hardie, Gulf War Veteran

Delivered at the Commencement of the Gulf War Illness Congressionally Directed Medical Research Program’s Integration Panel Meeting at metro Washington, DC., December 2, 2010

The following are real stories from real Gulf War veterans who have written to me in the last few months.

From a A Missouri Navy Gulf War Veteran with PTSD and GWI: “I am a 90-91 veteran of the Gulf War. I have tried to receive help for many years through the Va and other sources. Since my discharge from the Navy I feel as though I really have not had a "good day" , when I am not sick with physical problem I am so withdraw from the outside world. I really don't know why I am writing this to you I just seen this and thought maybe someone would understand. Could you tell me where I could go or what you think Is wrong maybe you have encountered other veterans with some of these same problems.

“I have chronic breathing problems and bad stomach aches and body aches. My nose runs all the time and I have this persistent cough and a lot of time have hoarseness. I hate nighttime I do not sleep. I have severe anxiety and insomnia. I have severe mood swings and most of the time just want to be alone I cannot be around groups of people and really do not ever want to carry on conversations with anyone. I do not have friends and really do not want them. I just feel like life isn't going to be long for me so its hard for me to see the future. Is there any information or advice you could give me to help me and my family before I loose them all. Thank you your fellow veteran.”

And, From a female Gulf War veteran: “I finally (today) filed for VA disability for issues I have been dealing with since 1991 and that have increasingly gotten worse in the last 10 yrs. I filed for Fibromyalgia, Fatigue, tinnitis, headaches, plantar fascitis, and IBS. I did take the little pills and get the shots before deploying, but the military didnt keep records of this! There were also the black pesticide trucks all over Khobar where I lived every night. Main problem is that now, at 42, I can no longer handle the episodes or manage them with rest, diet, supplementation, etc, and new symptoms are cropping up now. I do not think I can work and support myself in a few years when they worsen even more.”

And, after responding to her, “THANK YOU THANK YOU THANK YOU THANK YOU THANK YOU - It is nice to have someone tell me I have a case for my 19 years of suffering!!”

And, from A Medically Retired Army Gulf War Veteran from Kentucky: “ I'm feeling a little crappy, but oh well. I will live. Never had these rashes before the gulf. And they get bad and I get much sicker like I am now . Then my norm. But I have faith, things are going to get better.”

…And so, for the veterans like the Missouri Gulf War veteran with PTSD and GWI who has given up hope…

…For the 42-year-old female Gulf War veteran who is relieved just to know she has a case for her 19 years of suffering….

…For the Gulf War veteran from Kentucky who has faith in what we have been doing and what we are about to do here today…

…And for the approximately 250,000 of our fellow Gulf War veterans still dealing with chronic and debilitating multi-symptom illness not explained by any known psychiatric or medical diagnosis, please join me in a moment of silence before we begin this critically important work today and May God bless our efforts here today.

Wednesday, November 24, 2010

Comment Period on Expanding Gulf War Presumptives to Include Functional G-I Disorders Extends through Dec. 17

Federal Register:
Department of Veterans Affairs
38 CFR Part 3
RIN 2900-AN83
Presumptive Service Connection for Diseases Associated With Persian Gulf War Service: Functional Gastrointestinal Disorders
Agency:  Department of Veterans Affairs
Action:  Proposed rule.

SUMMARY:  The Department of Veterans Affairs (VA) is amending its adjudication regulations concerning presumptive service connection for medically unexplained chronic multi-symptom illnesses associated with service in the Southwest Asia theater of operations for which there is no record during service.  This amendment is necessary to implement a decision of the Secretary of Veterans Affairs that there is a positive association between service in Southwest Asia during certain periods and the subsequent development of functional gastrointestinal disorders (FGIDs), and to clarify that FGIDs fall within the scope of the existing presumption of service connection for medically unexplained chronic multi-symptom illnesses.  The intended effect of this amendment is to clarify the presumption of service connection for these illnesses based on service in Southwest Asia theater of operations during the Persian Gulf War.

Dates:  Comments must be received by VA on or before December 17, 2010.
Addresses:  Written comments may be submitted through http://www.Regulations.gov.

Detailed information on the committee’s findings may be found at http://www.iom.edu/Reports/2010/Gulf-War-and-Health-Volume-8-Health-Effects-0f-Serving-in-the-Gulf-War.aspx

The report findings are organized by category and can be found under the heading, “Table of Contents.”

Monday, November 15, 2010

RAC Presentations Available Online

Written by Anthony Hardie, 91outcomes.com 

(91outcomes.com) – The presentations made at the last meeting of the Congressionally chartered Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI) are now available online for the public.

Due to VA security restrictions, RAC staff currently have to travel to a VA location about an hour away from their work location in order to upload the presentations to the website.

RAC staff are committed to meeting veterans’ needs, and are working with VA staff on a solution that will have the presentations made at RAC meetings publicly available in a timely fashion. 

See:  http://www1.va.gov/RAC-GWVI/Presentations_November_2010.asp

Iraq: The $3 Trillion War

Sunday, November 14, 2010

Gulf War Veterans: Participate in Treatment Studies

 

To participate in clinical trials focused on treatments for ill Gulf War veterans, see ClinicalTrials.gov:  http://clinicaltrials.gov/ct2/results?term=gulf+war

20 Years After the War, DoD at Odds with VA, Institute of Medicine, Science


U.S. Defense Department still touts “stress” research while one-third of veterans of 1991 Gulf War who remain disabled due to chronic multi-symptom illness still seeking effective treatments

Written by Anthony Hardie, 91outcomes.com 

(91outcomes.com) – Nearly two decades after the war’s end, the U.S. Department of Defense (DoD) continues to tout its research into “stress” for veterans of the 1991 Persian Gulf War, despite years of published research studies, including the by federal VA and the Institute of Medicine, that show otherwise.

 gwi_fhp_rsp

DoD graphic touting “stress” research for Gulf War veterans.  Retrieved from the DoD website, November 14, 2010. 

A 2008 report by the Congressionally chartered U.S. Department of Veterans Affairs Research Advisory Committee on Gulf War Veterans’ Illnesses showed that Gulf War illness is real, affects roughly one-fourth to one-third of the 697,000 veterans of the war, and is likely the result of exposures to a combination of chemicals.

And, a 2010 report by the Institute of Medicine, part of the National Academy of Sciences, showed that 250,000 Gulf War veterans remain ill and disabled as the result of chronic multi-symptom illness that is unrelated to any psychiatric or psychological disorders.

The DoD’s webpage shows the following, proudly proclaiming many years of research into “stress” as a cause of Gulf War veterans’ chronic multi-symptom illnesses. 

It is widely recognized the stress can aggravate physical health conditions.  However, more than two decades of peer reviewed scientific research recognized by the IOM and the federal VA in their voluminous reports have shown that stress is, at most, an aggravating factor for complex and chronic multi-system, multi-symptom illnesses that continue to afflict and disable roughly one-third of the veterans who served in the Gulf War two decades ago.

It is unclear why that DoD remains at odds with the conclusions of science, the Institute of Medicine, and the federal VA tasked with aiding and assisting veterans of past and current wars.

91outcomes Live on Philadelphia Radio Today

 

(910utcomes.com) – Today Philadelphia radio talk show host Chris Moore will host me (Anthony Hardie) during an hour-long talk show focused on Gulf War veterans and helping to spread the word about 91outcomes.com and veteran-driven efforts to help other veterans. 

The show will air on KDKA-FM 89.3 Pittsburgh at 5:00 p.m. Eastern (4 p.m. Central, 3 p.m. Mountain, 2 p.m. Pacific). 

Veterans and others are welcome to call-in during the show, at 1-800-876-1316. 

KDKA-FM 89.3 Pittsburgh is a 50,000-watt radio station that is heard in 36 states and Canada.

For more information, see http://pittsburgh.cbslocal.com

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http://pittsburgh.cbslocal.com/

Thursday, November 11, 2010

Veterans Day: We Remember Our Own – the Living, and those who Lived Among Us

Dan Devlin was my unit commander, and a good man.  We lost him earlier this year.  Thanks to Joel for posting this picture to our BSBC page.   -Anthony Hardie

Sunday, November 7, 2010

Boston University and Veterans Advocate for Improved Care

 

Written by Lisa Chedekel, chedekel@bu.edu

101102_flag2(Boston, Mass. – Boston University) -- Some of the wounds of war are invisible to the untrained eye: traumatic brain injuries, post-traumatic stress disorder, and illnesses traced to chemical exposures, to name a few.

These injuries, which affect hundreds of thousands of veterans of the first Gulf War and the ongoing wars in Iraq and Afghanistan, have been compounded by delays and controversy in recognizing, treating and compensating the veterans who suffer from them, according to Boston University Law School and Boston University School of Public Health experts and veterans' advocates who spoke at the annual Pike Conference, Oct. 29, 2010 in Boston.

"The VA's come a long way in the last few years, but there is still a lot of work that needs to be done," said conference panelist Paul Sullivan, a Gulf War veteran who heads the non-profit advocacy group Veterans for Common Sense. "We need more research, more treatment options, more doctors and mental health professionals… We [also] need facts and figures about the wars."

Sullivan joined fellow veteran Anthony Hardie and a line-up of BU School of Public Health professors at the conference to discuss the continuing challenges in research and treatment for troops who served in the 1991 Gulf War, as well as those now returning from Iraq and Afghanistan. 101011_2010pike.jpg

Chief among those challenges has been a 20-year battle, waged by veterans of the Gulf War, to get recognition and treatment for a cluster of debilitating symptoms known as Gulf War illness. Two years ago, a scientific panel directed by Roberta White, the conference keynote speaker and chair of the BUSPH Environmental Health Department, issued a landmark report affirming that neurotoxic exposures are causally associated with Gulf War illness. The U.S. Department of Veterans Affairs has since agreed to re-examine the disability claims of Gulf War veterans.

"So much time was squandered," said Hardie, who serves on the scientific panel. He said he and other veterans were told for years, "'There's nothing wrong with you guys. It's all in your head.'"

He called White "one of our leading champions" in studying the causes of Gulf War illness.

BUSPH faculty members spoke of the need to ensure that the new generation of veterans receives prompt treatment for post-traumatic stress disorder [PTSD], traumatic brain injury, and mental-health problems.

Michael Grodin, professor of health law, bioethics & human rights at BUSPH and of family medicine and psychiatry at BU School of Medicine, said he was especially concerned about troops with PTSD and other mental-health problems being re-deployed multiple times into the war zone. He said that while there has been progress in understanding PTSD, "I think we need to utilize many treatment approaches."

George Annas, chair of health law, bioethics & human rights at BUSPH and a professor at the BU schools of law and medicine, noted that the military is grappling with an increase in the suicide rate among active-duty soldiers. Recently, the Army announced two major research project aimed at trying to understand risk factors and examine which suicide-prevention programs are successful.

"What intervention programs work? We don't know much about that," Annas said. "In this case, we're back where we were with the Gulf War syndrome, in 1992 -- we recognize there's a problem, and now we need to figure out what to do about it."

Leonard Glantz, a professor of health law, bioethics & human rights, said suicide prevention is difficult in both civilian and military life, and that identifying risk factors among soldiers is challenging because the number of suicide cases is relatively small.

Sullivan's group, which has battled for data from the U.S. Department of Veterans Affairs, calculates that the VA's Gulf War, Iraq and Afghanistan patient count will reach 1.5 million by the end of 2014. Data obtained by the group shows that as of June 30, 2010, the VA had treated 594,000 Iraq and Afghanistan veterans -- up 29,000 from the previous three months. Of those, 295,000 were diagnosed with at least one mental health condition.

Hardie encouraged BU researchers to apply for available federal funding to study effective treatments for injured veterans.  (http://cdmrp.army.mil)

"We've had a lot of success over 20 years," he said, "but 20 years is a long time to wait for health care."

Annas said BUSPH faculty members hope to continue working with veterans' advocacy groups on research and ethical issues.

Thursday, October 28, 2010

Boston University Health Law Conference Focuses on Gulf War, Post-9/11 Veterans

 

Coming Home Injured: Care and Advocacy for America’s Veterans


Seventh Annual Health Law Pike Conference

Friday, October 29, 2010

Boston University School of Law, Room 1270
765 Commonwealth Ave, Boston, MA 02215

pikeOne in four veterans of the 1991 Gulf War suffer from an illness caused by exposure to toxic chemicals, according to a BUSPH-based research panel. Almost two decades after the war ended, however, no effective treatments have been found. This year's Pike Conference will explore the post-Gulf War experience of veterans seeking medical help, the problems encountered and concrete advocacy steps that can be taken to improve the quality of care.

Boston University Schools of Law and Public Health will sponsor a one-day forum, Coming Home Injured: Care and Advocacy for America's Veterans. Scientific, medical, and legal experts will contribute to framing the issues, but the primary emphasis will be on the experience and suggestions for action of the veterans themselves.

The annual Pike Conference is held to honor Neal Pike, a BU School of Law graduate, distinguished lawyer, and lifelong advocate for individuals with disabilities.

The event is free and open to the public.

 

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

Conference Schedule

8:45 a.m. Welcome
Deans of School of Law and School of Public Health ‘

9:00 a.m. Conference Overview
Care of Veterans in US since World War II

Veterans of the First Gulf War

9:10 a.m. - Gulf War Illness: Documenting Health Effects of Serving in the Gulf War
Roberta F. White, School of Public Health

10:00 a.m. Commentary & Audience Discussion
Wendy Mariner, School of Public Health/Law

10:30 a.m.- 10:45 a.m.  Break

10:45 a.m. Advocacy for Gulf War Veterans: Getting Them the Care They Need (and Deserve).  Panel:
Anthony Hardie, Research Advisory Committee on Gulf War Illness

Paul Sullivan, Veterans for Common Sense

12:00 p.m. Presentation of the Pike Prize

12:15 p.m. – 1:30 p.m.  Lunch

Veterans of Iraq and Afghanistan (Post-9/11)

1:30 p.m.  Diagnosing and Treating Post Traumatic Stress Disorder and Traumatic Brain Injury
Michael Grodin, School of Public Health

2:15 p.m.  Research (and Prevention) of Suicide in the Military (and after Discharge)
George Annas, School of Public Health/Law

2:45 p.m. Commentary & Audience Discussion, led by Leonard Glantz, School of Public Health/Law

3:30 p.m. Advocacy for Post-9/11 Veterans: Where do we go from here?

4:30 p.m.  Wrap-up and plans for future actions

 

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Click here to view the Conference Brochure and Schedule (PDF)

Friday, October 22, 2010

VA Breaks Promises on Gulf War Veterans Data Report

 

VA officials Can Expect Agitated Veterans at November 1-2 RAC meetings in Boston if Completed Report is Not Public by then

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) – Gulf War veterans and many of the Institute of Medicine-reported 250,000 veterans suffering from Gulf War Illness (Gulf War Syndrome) have found encouragement at the new VA, with an internal Task Force and lengthy Task Force report and task list, a new internal Gulf War Steering Committee, and redone research proposal requests that specifically exclude stress or psychiatric studies and require a focus on treatments that would improve the health and lives of ill Gulf War veterans.

However, as noted by the VA’s Advisory Committee on Gulf War Veterans (ACGWV) chairman Charles Cragin, good decisions cannot be made without good data.   In its written final report, Cragin’s committee called for prompt restoration of Gulf War Veterans Information System (GWVIS) reports to provide that data.

The email chain shown below, submitted by longtime Gulf War veteran advocate Kirt Love, who requested and succeeded in seeing created the ACGWV, is regarding repeated promises, broken again and again by current VA officials regarding the GWVIS, which provide critically important data about Gulf War veterans.

On the positive side, it is good news to hear that the new report is a, “100+ page report contains a lot more statistics than the old GWVIS,” and, “The goal of the new report is to provide a more integrated and consistent set of data,” than the old GWVIS reports originally developed by legendary Gulf War veteran advocate and former VA data employee Paul Sullivan

On the negative side, however, “As such, it is taking [VA] a lot more time to validate and proof than anticipated,” says VA’s top data official.

The timeline of  VA’s newest set of broken promises, most made by VA Senior Executive Service official William Kane,  is as follows:

  • February 2009:  As a member of VA’s now-completed Gulf War Veterans’ Advisory Committee, Love requested the new GWVIS report, which was expected by committee members, the RAC, and Gulf War veterans and advocates in a timely manner.
  • February 25, 2010:  Love again requests an update, after a year has gone by.  Nearly a week later, a VA official responds to tell Love they plan on “publishing updated GWVIS reports by the end of June 2010.  We plan to publish quarterly after that.”
  • August 11, 2010.  With the June 2010 deadline now long past, Love contacts VA again.  The response from the VA official:  We have a   “targeted completion date of the end of September.”
  • September 24, 2010.  Love asks VA if the “end of September” date is still valid. The official responds saying, “It will probably be more like early October.”
  • October 18, 2010.   With the “end of September” and “early October” deadlines now past, Love contacts VA yet again.    Three days later, a top VA data official responds, “I am expecting the remaining validation work and concurrence process to take approximately 2 weeks,” meaning early November at the earliest.
  • October 21, 2010.  A justifiably frustrated Love publishes the email chain of more broken promises at Gulflink. 

It should be noted that on November 1-2, 2010, the Research Advisory Committee on Gulf War Veterans’ Illnesses will meet in Boston, Mass.  VA officials should expect justifiably pointed questions from highly agitated Gulf War veteran members and other advocates if the very long overdue GWVIS has not been finalized and publicly released before that time.

The full text of Kirt Love’s email chain is available below and from Love’s “gulflink” Yahoo group, at:  http://groups.yahoo.com/group/gulflink/message/11977

MORE INFORMATION: 

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

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Thursday, February 25, 2010 11:03 AM
To: Kane, William (SES), VBAVACO
Subject: Fw: February 2008 vs August 2008 GWVIS report totals

Mr. Kane
My name is Kirt P. Love, disabled veteran. Founder and member
of the VA ACGWV committee that concluded in September 2009.
Short and sweet, I sent a email into VBA requesting a answer about
discrepancies in the GWVIS report released Feb 2009. The numbers
compared flaws from the Feb 2008 report to the Aug 2008 report.
In May I pushed harder and Thomas Kniffen got involved. There
was a subcommittee meeting of the ACGWV with VBA on June
30th to discuss the state of report errors. I attended.
Its been 8 months since that meeting and one year since I sent
the original email into VA on this topic. I understand that this has
been in debate for some time over coding issues at VBA.
Will there be a timeline for the updated reports being released?
Will the 2009 report coincide with this?
Will the VBA website post this information with a explanation
of what transpired?
http://www.vba.va.gov/REPORTS/gwvis/index.asp
I imagine some of this will be shared with Jim Binns at the RAC
meeting next week. As I share information with Jim on what took
place with my committee.
Thank you for your time and attention.
                                                Sincerely
                                                Kirt P. Love
                                                Director, DSBR
                                                        former member of the ACGWV committee

 

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

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Tuesday, March 02, 2010 11:39 AM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

    In case you were not present at the 2 Mar RACGWVI meeting, we committed to a goal of publishing updated GWVIS reports by the end of June 2010.  We plan to publish quarterly after that.  As before, we'll post the reports on our website.  Thanks for your interest in the matter.

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

From: Kirt Love <kirt@gulflink.org>
To: Kane, William (SES), VBAVACO
Sent: Wed Aug 11 11:24:27 2010
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Mr. William
It is August 11th 2010, it has been 14 months since
the ACGWV met with VBA about the GWVIS report
issues.
The March RAC meeting you promised a June delivery
date for the updated GWVIS. It is now mid August
and not even a explanation.
Is there a publication date?
                                            Sincerely
                                            Kirt P. Love
                                            Director, DSBR
                                                Former member VA ACGWV committee

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

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Wednesday, August 11, 2010 11:25 AM
Subject: Re: February 2008 vs August 2008 GWVIS report totals


Thanks for your follow-up note.

It was decided that rather than resuming publication of the GWVIS report, a new report would be generated by the Office of Policy and Planning (OPP). The goal of the new report is to provide a more integrated and consistent set of data.

We are currently working with OPP and other VA offices to generate the report with a targeted completion date of the end of September.

Thanks again for your interest.

---------

 

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Friday, September 24, 2010 1:19 PM
To: Kane, William (SES), VBAVACO
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Is this still on for the end of September?
                                Sincerely
                                Kirt P. Love
                                Director, DSBR

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

----- Original Message -----
From: Kane, William (SES), VBAVACO
To: kirt@gulflink.org
Sent: Friday, September 24, 2010 1:15 PM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

    It will probably be more like early October.  The draft report was prepared and is being reviewed internally with comments due on 9/28.  Depending on the nature of the comments and the time it takes for corrections, the release could be later than 30 September.

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

From: Kirt Love [mailto:kirt@gulflink.org]
Sent: Monday, October 18, 2010 12:48 PM
To: Kane, William (SES), VBAVACO
Subject: Re: February 2008 vs August 2008 GWVIS report totals

Its now mid October, is this about to go out?
                                        Sincerely
                                        Kirt P. Love
                                        Director, DSBR

 

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

----- Original Message -----
From: Tran, Dat (SES) VACO
To: kirt@gulflink.org
Sent: Thursday, October 21, 2010 4:29 PM
Subject: RE: February 2008 vs August 2008 GWVIS report totals

Kirt:
VA analysts are still going through the draft report to validate all the statistics and proof all the narratives. This 100+ page report contains a lot more statistics than the old GWVIS. As such, it is taking us a lot more time to validate and proof than anticipated.
Once the validation is completed, we will circulate the report internally for final review and concurrence. I am expecting the remaining validation work and concurrence process to take approximately 2 weeks. Please feel free to contact me if you have any questions.  Hope all is well with you. As soon as the report is concurred internally for release, I’ll let you know.
Best,
Dat

 

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

---------- Forwarded message ----------
From: Kirt Love <kirt@gulflink.org>
Date: Thu, Oct 21, 2010 at 10:05 PM
Subject: Fw: February 2008 vs August 2008 GWVIS report totals - new GWVIS report
To: Gulflink <gulflink@yahoogroups.com>
Cc: Jim Binns, rac@bu.edu, ANTHONY HARDIE,

Dear Readers
See what I meant. VA knows that to make this go
away they need this report to hit in November. Congress
is out for the holiday season and nothing gets going
again until March 2011. They want this to go out silent
and be ignored as long as possible. The last year
is the hint based on there past track record.
I told you all they would continue to stall. I told you
that they wouldnt make the September, and then
October deadlines.
There is even conflicting internal information on the
status of this report. As another department person
had said this was already in concurrence. Now Dat
is saying its back in review.
I have little faith the report will have teeth. But, it is
also a reflection on Gingrich and his task force much
less the bad lip my committee gave it. Just have
to see, as the word "Narratives" has gotten my
attention. That usually means some at least some
investigation work requiring oration.
Well, you wont see this anywhere else but "Gulflink".
                                            Sincerely
                                            Kirt P. Love
                                            Director, DSBR

Wednesday, October 20, 2010

ATSDR Launches National ALS Registry

 

(Centers for Disease Control & Prevention) - In a groundbreaking step to learn more about Amyotrophic Lateral Sclerosis, also known as ALS or Lou Gehrig's disease, the federal Agency for Toxic Substances and Disease Registry (ATSDR) has launched the National ALS Registry.

The registry is a national database that provides an opportunity to better understand one of the most common neuromuscular diseases worldwide, affecting people of all races and ethnic backgrounds – especially between the ages of 55 and 75.

The registry will gather and organize information about potential and known risk factors and symptoms of ALS. The information can help researchers evaluate shared risk factors common among patients, such as heredity or possible environmental exposures, and help estimate the number of ALS cases diagnosed each year.

"A National ALS Registry provides researchers and physicians with more thorough information about ALS that will further empower them in the fight to treat and possibly prevent this disease," said Christopher Portier, Ph.D., director of ATSDR. "Today, the cause or causes of ALS are largely unknown; this is the first nation-wide registry created to enhance our knowledge about this disease."

ALS causes human nerve cells to stop functioning and eventually die. A diagnosis of the disease leads to muscle weakness, paralysis, and eventually death. No one knows how many people are living with ALS, though scientists estimate 30,000 people in the United States have the disease.

Each entry in the registry includes a patient health history, work experiences, and family medical histories. Individual patient information on the registry will be confidential and will not be publicly released. Patients choosing to participate can visit www.cdc.gov/als to register.

"The more people participate in the registry, the more comprehensive and diverse the data will be to help researchers and physicians better understand this disease," said Kevin Horton, Dr.P.H., ATSDR's ALS program administrator. "In addition, the registry provides a means to share information about research findings and clinical trials."

For more information, visit www.cdc.gov/als. The ATSDR website is www.atsdr.cdc.gov.

Editor's Note: The Agency for Toxic Substance and Disease Registry, ATSDR, is a federal public health agency of the U.S. Department of Health and Human Services. Its mission is to prevent harmful exposures and diseases related to toxic substances. It is commonly referred to as CDC's sister agency.

###
U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES

Monday, October 18, 2010

Gulf War Presumptive Chronic Pain Condition and Costochondritis: Pain the Chest and Ribs

From Fibromyalgia & CFS Blog

Adrienne Dellwo  By Adrienne Dellwo, Fibromyalgia & Chronic Fatigue Guide

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

Do you get a horrible burning pain in your chest and ribcage? Have you thought you were having a heart attack, only to have doctors say your heart is fine? If so, you may have costochondritis.

This was actually my first fibromyalgia-related pain. When it hit, I ended up in the ER with a suspected heart attack. The doctor ruled out anything cardiac or intestinal, then poked a few spots where my ribs and breastbone come together. That hurt like crazy, so he said I had an injury there and that it would heal in a few days.

Of course, it didn't heal. It comes and goes, causing the worst of my pains and a lump on my breast bone that looks like half a golf ball. In the medical community, it's a debate as to whether this is costochondritis, somehow made chronic by fibromyalgia, or just another symptom of fibromyalgia that mimics costochonritis. Personally, I think it's a separate condition. My chest pain is accompanied by a lump on my breastbone that gets better with ice and anti-inflammatories. That doesn't sound like fibromyalgia to me!

Note: If you start getting chest pain, don't assume it's costochondritis or fibromyalgia! Always treat chest pain as a possible heart problem and get it checked out immediately.

Learn more about costochondritis, its symptoms, how it's diagnosed, and how you can treat it:

Do you have costochondritis? How bad is it? Do you think it's part of FMS or a separate condition? Leave your comments below!

Learn more or join the conversation!

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New Study: Gulf War Presumptive Pain Condition Overlaps with Restless Legs Syndrome

Many People With Fibromyalgia May Also Have Restless Legs Syndrome and Poor Sleep Quality, New Study Finds

By Bill Hendrick, WebMD Health News; Reviewed by Laura J. Martin, MD

Oct. 15, 2010 -- People who have fibromyalgia are much more likely to also have restless legs syndrome, according to a new study. Restless legs syndrome is a baffling disorder that causes uncomfortable sensations in the legs and/or the urge to move the legs.

The study, published in the Oct. 15 issue of the Journal of Clinical Sleep Medicine, found that 33% of people with fibromyalgia also had restless legs syndrome, compared to 3.1% who did not have fibromyalgia.

The findings are important because sleep disruption caused by restless legs syndrome may exacerbate the symptoms of fibromyalgia, researchers say.

But the good news, they say, is that restless legs syndrome can be treated and may improve the quality of life of people who have fibromyalgia.

Fibromyalgia affects 2%-4% of the U.S. population and is more common in women, according to the American College of Rheumatology.

A Visual Guide to Fibromyalgia

Sleep Disturbances Are Common in Fibromyalgia Patients

“Sleep disruption is common in fibromyalgia and often difficult to treat,” Nathaniel F. Watson, MD, one of the authors and an associate professor of neurology at the University of Washington in Seattle, says in a news release. “It is apparent from our study that a substantial portion of sleep disruption in fibromyalgia is due to restless legs syndrome.”

The study involved 172 people with fibromyalgia, 93% of whom were women. They were compared with 63 people who were free of pain and fatigue. Those in the control group were younger, with a mean age of 41, compared to 50 for those with fibromyalgia.

A measure of sleep quality showed that problems with sleeping were more severe among people with fibromyalgia and restless legs syndrome.

The researchers conclude that a substantial portion of sleep disturbance found in patients with fibromyalgia may be related to restless legs syndrome.

They suggest that doctors routinely ask fibromyalgia patients about the symptoms of restless legs syndrome, because treatment may improve their sleep and quality of life.

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Fibromyalgia, Irritable Bowel Syndrome, and Chronic Fatigue Syndrome are all presumptive conditions for Gulf War veterans, meaning disability claims are, in theory, nearly “automatic”

 

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Restless Leg Syndrome (RLS) Overview

Restless leg syndrome is a disorder in which there is an urge or need to move the legs to stop unpleasant sensations.

Symptoms

RLS leads to sensations in the lower legs that make you uncomfortable unless you move your legs. These sensations:

  • Usually occur at night when you lie down, or sometimes during the day when you sit for long periods of time
  • May be described as creeping, crawling, aching, pulling, searing, tingling, bubbling, or crawling
  • May last for 1 hour or longer
  • Sometimes also occur in the upper leg, feet, or arms

You will feel an irresistible urge to walk or move your legs, which almost always relieves the discomfort.

Most patients have rhythmic leg movements during sleep hours, called periodic limb movement disorder (PLMD).

All of these symptoms often disturb sleep. Symptoms can make it difficult to sit during air or car travel, or through classes or meetings.

Note: Symptoms may be worse during stress or emotional upset.

Treatment

There is no known cure for restless leg syndrome, but there are treatments that can help improve symptoms.

Treatment is aimed at reducing stress and helping the muscles relax. The following techniques may help:

  • Warm baths
  • Gentle stretching exercises
  • Massage

Low doses of pramipexole or ropinirole (Requip) can be very effective at controlling symptoms in some people.

If your sleep is severely disrupted, your health care provider may prescribe medications such as Sinemet (an anti-Parkinson's medication), gabapentin and pregabalin, or tranquilizers such as clonazepam. However, these medications may cause daytime sleepiness.

Patients with iron deficiency will receive iron supplements.

Low doses of narcotics may sometimes relieve symptoms of restless leg syndrome.

Causes

Restless leg syndrome (RLS) occurs most often in middle-aged and older adults. Stress makes it worse. The cause is not known in most patients.

RLS may occur more often in patients with:

A form of RLS may be passed down in families. This may be a factor when symptoms start at a younger age. The abnormal gene has not yet been identified.

Restless leg syndrome can result in a decreased quality of sleep (insomnia). This lack of sleep can lead to daytime sleepiness, anxiety or depression, and confusion or slowed thought processes.

Tests & diagnosis

There is no specific examination for restless leg syndrome. The health care provider will not usually find any abnormalities, unless you also have peripheral nerve disease. Blood tests (CBC and serum ferritin) may be done to rule out iron deficiency anemia, which in rare cases can occur with restless leg syndrome.

Examination and testing may be used to rule out other disorders with similar symptoms.

Prognosis

Restless leg syndrome is not dangerous or life-threatening, and it is not a sign of a serious disorder. However, it can be uncomfortable and disrupt your sleep.

Prevention of Symptoms

Techniques to promote muscle relaxation and stress reduction may reduce the incidence of restless leg syndrome in people prone to the condition.

Complications

Insomnia may occur.

When to contact a doctor

Call for an appointment with your health care provider if:

  • You have symptoms of restless leg syndrome
  • Your sleep is disrupted