VCS Advocacy in the News - July 2011

VCS Advocacy in the News
July 6, 2011


VCS Attends White House Meeting

An honor and a pleasant surprise: VCS's Paul Sullivan was selected to attend a "Champions of Change" round table discussion about veterans issues on June 27.  VCS raised issues important to veterans during a meeting that lasted more than two hours.  The White House was receptive to the concerns we raised.

"Champions of Change" honored Vietnam War veteran Jim Binns as part of President Obama's Winning the Future initiative.  VCS nominated Jim for nearly 10 years of diligent advocacy for our 250,000 ill Gulf War veterans. 

On the same day, VCS presented our views supporting more research, treatment, and benefits to VA's Research Advisory Committee on Gulf War Veterans' Illness, the panel chaired by Jim Binns.  Our attendance at these important events is possibly only because of your support and the dedication of our VCS staff.


Important Lawsuit Update and News

On Friday, July 1, 2011, the Department of Veterans Affairs filed a petition for rehearing en banc with the Court of Appeals for the Ninth Circuit.  VA's petition asks the Court of Appeals to assign a panel of eleven judges to rehear and revisit the issues previously addressed in the May 10, 2011, decision of a three-judge panel at the Court of Appeals.

That prior decision ruled, in favor of VCS and Veterans United for Truth, that VA is violating the Constitutional right of veterans to timely mental health care and service-connected disability compensation.   VCS and Veterans United for Truth have not yet filed a response to VA's petition.

The Lancet medical journal mentioned the VCS / VUFT court decision showing that VA mental health care was heavily criticized.

The San Diego Union Tribune discusses the landmark Appeals Court opinion in hopes "that the judiciary's scathing critique will spur Congress and the President to help disabled veterans immediately."

USA Today also cites the court case showing individual veterans struggles with the claims backlog.


VCS FOIA Research Assists with Study on Cost of Wars

A very important new study by Catherine Lutz at Brown University reports on the very high human financial costs of the Iraq and Afghanistan.

VCS worked closely with Professor Lutz to include the most recent official government information about military casualties and veteran healthcare and disability benefit activity obtained exclusively by VCS under FOIA.  Your support of VCS helps us uncover important facts you and Americans need to know.

Other Important News Clips

The New York Times reports on new research on Gulf War, Iraq War, and Afghanistan War illnesses revealing an increase in respiratory illnesses.

New scientific research shows the coenzyme Q10, an antioxidant, improved a variety of 20 symptoms related to Gulf War illness in veterans.

Veterans with PTSD are more likely to develop increased health problems as they age, new research shows.

A new Pentagon survey find that troops are facing more intense fighting in Afghanistan.

Thank You,
 Veterans for Common Sense

House Passes Defense Appropriations Bill, CDMRPs Retained

(91outcomes.com) - The U.S. House of Representatives passed its version of the FY12 Defense Appropriations Act this morning by a vote of 336-87.  


Despite many rumours of expected floor amendments to reduce or eliminate funding for the acclaimed Congressionally Directed Medical Research Programs (CDMRPs), none were proposed on the House floor.


"You can perhaps chalk this up to luck, but I do think our grassroots advocacy made a difference," said Mark Vieth, Senior Vice President of Washington, DC-based lobbying firm Cavarocchi Ruscio Dennis Associates. 


Vieth, whose successful advocacy work includes leading an active coalition of several dozen health advocacy groups and support of two rare diseases that are part of the CDMRP research portfolio, said, "I believe the combined actions of all the groups in this coalition allowed us to hit every member of the House."


"The House Appropriations Committee certainly received signals that amendments were in the works, so I think our efforts may have convinced those considering amendments to back down," said Vieth.


Most of the programs suffered a twenty percent cut from previous year's levels, however.  A rare amendment sponsored by Rep. Dennis Kucinich (D-Oh.) and approved by a three-fifth's margin increased funding for CDMRP Gulf War Illness (GWI) treatment research by 25 percent over last year's level.  


The Senate has not yet passed an appropriations bill for Defense Department for the upcoming fiscal year, meaning this year's process is far from over.  


The highly regarded CDMRP, with a growing portfolio of important successes, supplements and complements other federal research programs like the National Institutes of Health (NIH) and the U.S. Department of Veterans Affairs.  VA research funds only VA employees, and has primarily approved research proposed solely by individual investigators.  


CDMRP programs, by contrast, focus on funding only the very best research that falls within strategic goals and funding plans developed by integration panels for each of the researched diseases.  Many of CDMRP's programs focus on broad collaborative efforts.  


And, unlike most other federal research programs including VA and most NIH programs, CDMRP also fully integrates not only medical research peer reviewers, but also consumer reviewers -- individuals directly affected by each disease being researched -- in every aspect of its planning, review, and final research recommendations.


CDMRP funding is highly competitive for the relatively small amount of available funding.  Approval for CDMRP grant funding is a highly prestigious honor in the medical research community.   


CDMRP health research programs are directed by Congress and virtually all are military related.  The programs range from those that are most visibly related to current military service, including traumatic brain injury, psychological health, and Gulf War Illness chemical injuries, to those that have direct, but longer-term association to military service, including ALS, MS, MDS, and an array of cancers and other diseases that are more highly prevalent among military servicemembers than those without comparable military service.  


The greater prevalence of these diseases among current and former military servicemembers is thought to be due to an array of hazardous exposures during military service -- often in combination -- including chemical, radiological, explosive blasts and other war traumas, and extremes in environment, stress, duress, and other factors.   


Demonstrating the value of this Congressionally directed funding, last week, a USA Today article heralded a CDMRP-funded study had found the first successful treatment to alleviate some GWI symptoms.


This success comes on the heels of another USA Today trumpeted CDMRP success identifying a blood test that shows brain injury severity, a critical factor in determining whether troops can be sent back to duty or must continue to recover to prevent further, exponentially significant brain damage.  


--Anthony Hardie, Madison, Wis.


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MORE INFORMATION:  Congressionally Directed Medical Research Program, http://cdmrp.army.mil 

VCS Praises Recent Gulf War Illness Actions, Calls on VA to Do More

 

Dear Friends,

I was glad to have an opportunity to make a short verbal presentation to the Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI) last week. 

Due to the meeting running a bit late, I shortened my comments. Here are my notes from what I wanted to say. 

To summarize, Veterans for Common Sense (VCS) is pleased that:

1. The RAC continues holding public meetings; and we strongly support the continuation of the RAC.

2. The CDMRP scientific research is realizing highly promising results, as shown by the new Congressionally Directed Medical Research Program-sponsored research by Dr. Beatrice Golomb shared with the RAC.  VCS strongly supports the CDMRP.

3. VA issued a new set of Gulf War reports.  VCS shared our suggestions to improve the Gulf War Veterans Information System (GWVIS) reports (now called the pre-9/11 phase of the war).  The RAC submitted a far more detailed list of suggested improvements, and VCS supports the RAC's proposal.  Please thank the RAC members for their diligence on this.  With robust, accurate, and timely reports, VA can develop and implement far better policies for our veterans.

In other matters, VCS still supports the urgent need to either rescind or amend Presidential Review Directive 5.  That's the 1998 White House policy that promotes the use of public relations ("risk communications") to deflect concerns about post-war illnesses.  In our view, science should be used first, not propaganda and spin.  The issue of ending or amending PRD5 is important because DoD and VA use the same public relations tactics to claim the toxic pollution from Iraq War burn pits and the radiation from three Japanese nuclear power plant meltdowns are harmless.

VCS also hopes the RAC will continue to do outreach, issuing more press releases and performing more public events so our veterans and the public are aware of the situation facing us. The RAC is the positive exception to VA's rule of perpetuating the myth the Gulf War was fast, cheap, and low-casualty.  The facts now show the Gulf War has lasted nearly 21 years (turning into the Iraq War in 2003).  The financial costs for research, healthcare and disability benefits are in the billions per year and expected to reach a total of $1 trillion over 40 years.  And, sadly, there are 250,000 ill from the 1991 phase of the war without treatments or answers.  Making the situation worse is the fact there are 650,000 more VA patients from the Iraq / Afghanistan war flooding into VA competing for resources.

We want to commend the RAC, as anything the RAC does is an improvement over VA's many years of inaction by most VA leaders.  VCS remains disappointed that VA does such a poor job informing Gulf War veterans about research, healthcare, and benefits. 

Thank you again for the opportunity to submit a longer statement for the record.  I hope you had a pleasant Fourth of July.

Best,

Paul

Paul Sullivan
Executive Director
Veterans for Common Sense
www.VeteransForCommonSense.org

Kucinich Amendment Increases Gulf War Illness Budget by 25 Percent

(91outcomes.com)  Through the leadership efforts of Rep. Dennis Kucinich (D-Ohio), today's House floor votes increased the CDMRP Gulf War Illness treatment-focused research budget by 25 percent, as we were seeking. We hope that the final vote will preserve the acclaimed Congressionally Directed Medical Research Program ("CDMRP"), which primarily Tea Party members of the House want to eliminate, claiming it's duplicative of NIH funding.  While it is true that some of the CMDRP subjects are the same as those researched by NIH, such as some of the cancer programs, the funded research is primarily high-risk, high-gain and would not otherwise be funded. This is particularly true for programs like GWI, which VA also researches.    However, VA only funds VA employees, meaning the treatment-focused CDMRP studies would never be funded by VA.   Additionally, most if not all of VA's GWI research is "investigator-initiated" and to date has lacked strategic focus. The proof is in the outcomes, with the first and only successful GWI treatment so far having been funded through the CDMRP and not VA. CDMRP has had just $31 million in appropriations for GWI; VA and DoD combined have spent over $400 million without finding a single treatment to help GWI patients. According to the Institute of Medicine (IOM) -- VA's gold standard -- 250,000 of the 696,842 veterans of the 1991 Gulf War, or more than one in three, suffer from chronic multi-symptom illness not explained by any physical or psychiatric disorder. [Personal note: The battle for CDMRP funding continues next in the Senate, where I'll be next week hoping to help in the broader efforts to fully restore or increase all CDMRP funding and increase GWI funding to at least $25 million, the level recommended by the IOM.] --Anthony Hardie, Madison, Wis. ======== Kucinich Continues Long-Term Fight for Gulf War Illnesses Research Funding

Kucinich Amendment Increases CDMRP Gulf War Illness Treatment Research Budget by 25% Washington D.C. (July 6, 2011) – Congressman Dennis Kucinich (D-OH) today continued his his long-term commitment to funding research into the cause and cure of Gulf War Illness by offering an amendment to the Defense Appropriations Act, H.R. 2219, which will increase the amount of money available to the Gulf War Illnesses Research Program by 25% over last year’s level to $10 million. Congressman Kucinich took to the floor today to urge support for the amendment. See the video here. The amendment passed today by a vote of 253 to 167 and will be included in the underlying bill. “Today, along with the support my colleague, Representative Michaud, I am offering this amendment to help an estimated 250,000 ailing veterans of the first Gulf War-- over one-third of those who served. It will bring the modest budget for the Gulf War Illnesses Research Program within the Congressionally Directed Medical Research Program (CDMRP) in line with that of its peer programs, to $10 million. “Too many veterans of the first Gulf War suffer from persistent symptoms such as chronic headache, widespread pain, cognitive difficulties, unexplained fatigue, gastrointestinal problems, respiratory symptoms, and other abnormalities that are not explained by traditional medical or psychiatric diagnoses.  Research shows that as these brave soldiers age, they are at double the risk for ALS or Lou Gehrig’s disease as their non-deployed peers. There may also be connections to Multiple Sclerosis and Parkinson’s disease. Sadly, there are no known treatments for the lifelong pain these veterans endure. “In a new landmark report, the Institute of Medicine has recognized that, and called for a major national research effort to identify treatments.  The scientific community has responded with a dramatic increase in the quality and quantity of proposals that are submitted to the Congressionally Directed Medical Research Program, otherwise known as CDMRP.  “In the FY 12 Defense Appropriations bill, CDMRP programs with direct relevance to current forces received a 25% increase.  The research conducted by the Gulf War Veterans Illnesses Research Program is vital not only for ill Gulf War veterans, but also for other military forces.  “As summarized by the IOM committee chair on the topic, Dr. Stephen Hauser, Gulf War illnesses research is ‘vital to the health and effectiveness of current and future military forces, in addition to Gulf War veterans.’   “Most encouraging, CDMRP-funded researchers have completed the first successful pilot study of a medication to treat one of the major symptoms of Gulf War illness.  Just last month, a report was released on the first successful medication program study in the history of Gulf War illness research.  The study showed that the low-cost supplement, Coenzyme Q10, produced significant improvement in one of the most serious symptoms of Gulf War illness, fatigue with exertion, as well as improvements in nearly every other symptom.  It is not a cure, and the study needs be replicated in a larger group, but the result is extremely encouraging. The next step is for clinical trials, which will only be funded by the CDMRP. “The amendment’s offset comes from the Pentagon Channel, which is costly. It is over $29 million in the past 3 fiscal years. It is redundant; there are 8 other armed forces network television services providing news, entertainment, lifestyle, documentary and religious programming to service members and their families across the globe and it does not provide a vital service.  This research is critical to our troops in the field now as well as those that will be fighting in the future. “According to the VA’s Research Advisory Committee on Gulf War Veterans’ Illnesses, the known causes of GWI are from exposures incurred in Iraq, like certain pesticides, or are from exposures incurred before deployment, like pyridostigmine bromide, a drug taken as an antidote to the nerve gas, Sarin.  There is also some evidence for a link between GWI and exposure to low-level exposure to nerve agents, close proximity to oil well fires, receipt of multiple vaccines, and combinations of Gulf War exposures.  “Current forces in Iraq and Afghanistan can still incur each of these exposures. That is why the Chair of the IOM Committee report on Gulf War Illnesses said that ‘This IOM report makes findings and recommendations vital to the health and effectiveness of current and future U.S. military forces, in addition to Gulf War veterans.’ “This is a time for us to say thank you to those who served; to say that we understand the suffering that Gulf War veterans have had with this illness and that we are dedicated to finding higher levels of research to make sure that we can relieve their suffering.

Scientists say Pentagon misleads on dust study

Scientists say Pentagon misleads on dust study By Kelly Kennedy, USA TODAY

WASHINGTON — The Pentagon is falsely claiming its research shows that airborne dust in Iraq and Afghanistan poses no health risk to U.S. troops, say three scientists whose review of that research found it riddled with mistakes.

Military officials then falsely said the review of their research backed their conclusion that the dust in the two war zones is no different from that in California, scientists Philip Hopke, Mark Utell and Anthony Wexler say.

The scientists, who issued their report last year for the National Research Council (NRC) of the National Academy of Sciences, were part of a team that reviewed a 2008 study at the request of the Pentagon.

The earlier report, which was conducted for the military by the Nevada-based Desert Research Institute, made a series of incorrect conclusions and used faulty research methods, the 2010 study showed.

• MORE: Researcher links toxins in war-zone dust to ailments

It is simply not true that research supports the Pentagon's claim that Middle Eastern dust is similar to that in the United States or that it poses no health risks, says Hopke, a Clarkson University scientist who conducted the National Research Council study.

"It's a bit disappointing when they know that, realistically, the data does not support that conclusion," he says.

Both studies were conducted to better understand risks as the number of U.S. troops who served in Iraq and Afghanistan and developed mysterious and severe respiratory conditions skyrocketed after their service. Since the start of the wars in 2003 and 2001, neurological disorders per 10,000 active-duty servicemembers have risen by 251%, while respiratory issues jumped by 47%, according to a USA TODAY analysis of military morbidity records from 2001 to 2010.

In a series of interviews and written memos in recent months, Pentagon health officials have claimed that the 2008 study found nothing wrong with the dust from the Middle East. "It is not noticeably different from samples collected in the Sahara Desert and desert regions in the U.S. and China," Craig Postlewaite, head of the Pentagon Force Protection and Readiness Office, told USA TODAY for a May story.

That USA TODAY report, Postlewaite and other Pentagon officials later said, "attempts to form a 'cause and effect' relationship" but there is "no evidence on which to base such a relationship."

In a blog on the Defense Department's website, Navy Capt. Patrick Laraby cited the NRC study directly: "After an exhaustive review, the NRC was unable to identify any health risks and indicated that they would need more data to determine whether there were any risks," Laraby wrote.

Utell, a professor at the University of Rochester School of Medicine who headed the National Research Council study, said it's incorrect for the Pentagon to claim the council's research found "no adverse health effects."

Instead, he said, the 2010 study found there could be negative health effects from the dust and that the 2008 research was so flawed "that they wouldn't be able to determine that with their study."

Utell, Hopke and Wexler, of the University of California-Davis, say their study found that the military's research in the 2008 report was flawed from the beginning, and the council made no statement that the dust is safe or similar to that back home.

In fact, they said the Army's research was so "ill-founded" that it couldn't be used to determine anything other than that the fine particulate matter levels in the Middle East far exceeded recommended World Health Organization levels.

Postlewaite did not respond directly to questions about how he and others represented the two studies. Instead, he said the council praises the military's "ability to carry out such a large-scale exposure-monitoring study in the midst of a military operation."

Utell agreed that the military took on a big task that could lead to better surveillance, but he and Wexler said military medical command were told even before they began the 2008 study that it was faulty.

"It is troubling that they did not take the scientists' recommendations to heart," Utell said.

Wexler said these kinds of studies have been performed before, so researchers should have known that the sampling equipment they used would be overwhelmed by sandstorms, that samples should not be kept in plastic containers in a hot environment because they could become contaminated, and that samples should be taken every third day - as has been the EPA standard since 1997 - rather than every sixth day.

"It's not like it's rocket science," Wexler said.

He said the researchers used "inappropriate" methods to test for metals, and that when they did perform analyses correctly, they did not release the results.

"It was just weird," Wexler said. "Were there people in the military trying to cover up and get away with something? Who knows. It could also be the best they could do with the resources they have."

Johann Engelbrecht, the Desert Research Institute scientist who led the 2008 study, called the council report "probably a fair judgment" and said he planned to use its recommendations for his upcoming report. That report is being paid for by a $1.2 million earmark put in the defense budget by Senate Majority Leader Harry Reid, a Nevada Democrat.

DRI, Engelbrecht said, is independent and was not pressured by the military.

Military Times Article Claiming TRICARE Increase Funds CDMRP is Factually Inaccurate

The email below is in response to a factually inaccurate Military Times article that stated the Congressionally Directed Medical Research Programs (CDMRP) were being funded through raised TRICARE rates.

The U.S. House Appropriations Committee clarified that assertion is false.

The email is from Mark Vieth, who represents two rare disease organizations and has taken a leading role in lashing together a broad coalition of CDMRP support groups.

--Anthony Hardie, Madison, Wis.

------

Dear Friends, 

Many of you may have seen an article published in Army Times or Navy Times that suggested that the CDMRPs are funded through reductions in the TRICARE budget.  

I asked Brooke Boyer on the House Appropriations Committee if there was any validity to this, and I wanted to share her response below:

“This article is not factually correct. 

 "Every mark in our bill is done on an individual basis; one mark that decreases funds does not have anything to do with a mark that increases funds elsewhere.  Furthermore, the $330 million that was reduced is FY12 money in the budget request, not FY11 money. 

 "TRICARE funding is operation and maintenance funding, which is only available for one year.  The Committee believes that the budget request overestimates the amount of TRICARE funding necessary in FY12, hence the reduction.”

Mark D. Vieth, Senior Vice PresidentCavarocchi Ruscio Dennis AssociatesWashington, DC

-------

The flawed information in the Military Times article appears to have been based on the following Senate hearing testimony:

Rick Jones, National Association for Uniformed Services - “And after hearing, for more than a year, that Secretary of Defense and the Chairman of the Joint Chiefs say that rising costs retiree health care was crippling our nation's national security, we read that the House Appropriations Committee intends to use $330 million of unexecuted money in the TRICARE health program for funding additional congressionally-directed medical research programs, many of which are outside traditional battlefield medicine, and/or duplicate subjects covered by the National Institute of Health. It's not appropriate.  Our folks might be outraged when they hear this, that their health care (inaudible) pay more for the monies going for additional research in areas unrelated to military”

  

CDMRP-Funded Study Finds the First Treatment for Gulf War Illness Symptoms

A new Congressionally Directed Medical Research Program (CDMRP) study has found the first successful treatment for some aspects of Gulf War Illness (GWI), a neurological disease with immunological dysfunction resulting in an array of chronic, debilitating symptoms that affects more than one in three veterans of the 1991 Gulf War.

The finding comes on the heels of highly flawed Washington Post and Military Times (Army Times, Marine Corps Times, etc.) articles suggesting the tiny CDMRP is duplicative and is taking needed DoD funding from elsewhere.

For GWI, research funding is available through two sources, the U.S. Department of Veterans Affairs (VA) and the CDMRP.  VA funding is restricted to VA employees.  CDMRP funding is available to any qualified researchers, including in academia or the public or private sectors, through a highly competetive, peer-reviewed process that includes "consumer reviewers" at every stage of the review process. ("Consumer reviewers" are individuals who are personally affected by the disease or disorder being studied.)

The study, led by Dr. Beatrice Golomb of the University of California-San Diego, has found that use of Coenzyme Q10, a powerful anti-oxidant, alleviates some of the most commonly reported symptoms of Gulf War Illness, including headaches, inability to focus, and fatigue after exertion.

The study found that some participants also had reduced chronic diarrhea and improved blood pressure levels.

The treatment uses liquid gel caps of the ubiquinone form of CoQ10 (not "ubiquinol") at 100mg and 300mg daily doses.  Taking the CoQ10 too late in the day, especially at higher doses, may have negatively impacted sleep quality.

The study found that pain relief was greater at the higher dosage.   Dr. Golomb said her study used CoQ10 produced by Jarrow Formulas.

The treatment was targeted at, and appears to have positively impacted the mitochondrial dysfunction believed to be a resultant component of GWI. In 2010, the Institute of Medicine estimated that 250,000 of the 696,842 veterans of the 1991 Gulf War are affected by this chronic multi-symptom illness.

The CDMRP was first funded for GWI in FY2006, and Dr. Golomb's study was among that first group that was funded.  

Read today's Page 4 USA Today news story about the new CDMRP-funded study:

• Anti-oxidants ease Gulf War Syndrome, study finds - USATODAY.com

Gel cap CoQ10 is available at highly discounted prices online at www.swansonvitamins.com.   Dr. Golomb also recommends Carlson brand cod liver oil.


-Anthony Hardie, Madison, Wis.

DAV Calls for Mandatory Reporting of all Sexual Assaults in VA Facilities

DISABLED AMERICAN VETERANS
807 Maine Ave., SW • Washington, D.C. 20024 • Phone (202) 554-3501 • Fax (202) 863-0233

NEWS RELEASE
FOR IMMEDIATE RELEASE
June 9, 2011

DAV Calls for Mandatory Reporting of all Sexual Assaults in VA Facilities

WASHINGTON — The Disabled American Veterans (DAV) finds very disturbing a Government Accountability Office (GAO) report which cites 284 cases of alleged, attempted or confirmed sex assaults on patients and employees at Department of Veterans Affairs (VA) medical centers between January 2007 and last July.

“It is fundamental that our VA hospitals offer a safe environment as well as top-flight medical care,” said DAV National Commander Wallace E. Tyson. “This is very disturbing news, and we urge the VA to put into place the report’s recommendations at all medical centers, clinics and other facilities.”

The GAO report examined sexual assaults at VA medical centers and found that many times the victims’ reports are mishandled or inappropriately acted upon based on decisions by local physicians and administrators.

The DAV strongly recommends the creation of a task force to ensure the VA adopts a culture of safety and promptly develops a uniform policy for the reporting of all sexual assaults.

“We look to the VA and the administration to make safety a priority in our VA medical centers,” Tyson said.

“Mandatory reporting is absolutely necessary. There must be a strict requirement set immediately that all allegations of sexual assaults be reported to an independent body of oversight,” Commander Tyson said.

“These reports can no longer be allowed to be dealt with solely at the local level.”

“This is not a gender-specific issue – this is an issue for every veteran, family member and caregiver.

Every person who enters a VA facility must know the government is doing everything possible to keep them safe. VA needs to be a place of care not of fear.”

The 1.2 million-member Disabled American Veterans, a non-profit organization founded in 1920 and chartered by the U.S. Congress in 1932, represents this nation’s disabled veterans. It is dedicated to a single
purpose: building better lives for our nation’s disabled veterans and their families. For more information, visit the organization’s Web site www.dav.org.

###

CDMRP Has Many Supporters

June 8, 2011

Chairman Bill Young --  Ranking Member Norm Dicks
Subcommittee on Defense Appropriations
H-140, the Capitol --  1016 Longworth HOB
Washington, D.C. 20515 -- Washington, D.C. 20515

Dear Chairman Young and Ranking Dicks:

As you prepare for the full committee markup of the fiscal year 2012 Defense Appropriations Act, we write to thank you for including $223 million for cancer research in the bill. We are hopeful that this life-saving cancer research funding as well as the funding for other medical research will remain in the bill after the full committee markup.

Should there be efforts during the full committee markup to strip funding for the Congressionally Directed Medical Research Programs (CDMRP) from the bill, the undersigned organizations respectfully request that you oppose such attempts and demonstrate your continued support for the funding.

Funding for the CDMRP is an opportunity to advance the best research to eradicate diseases and support the warfighter for the benefit of the American public. These research programs target diseases that impact directly the welfare of the American military, their families and the public. For example, CDMRP supports medical research on several forms of cancer (breast, blood, colorectal, melanoma, pediatric, brain, lung, ovarian, and prostate) and other diseases (like neurofibromatosis and bone marrow failure) that have lead to breakthroughs on nerve regeneration and traumatic brain injury. The CDMRP also funds research on Gulf War Illness, psychological health, spinal cord injury, and hearing and vision loss (which comprise a significant portion of current battlefield injuries). Other activities target diseases and conditions such as Lupus, Multiple Sclerosis, Scleroderma, ALS, and Autism.

The programs also represent a unique partnership among the public, Congress, and the military. The Department of Defense’s CDMRP supports high-quality medical research, concentrating its resources on research mechanisms which complement rather than duplicate the research approaches of the major funders of medical research in the United States. Although the diseases included in this program are diverse, the research on these disease types is often synergistic. For example, investigators increasingly look at the molecular profiles of cancer, often finding connections across cancers affecting different body sites. Advances or progress related to one cancer fuels the research on the other cancers in this program, and treatments initially approved for one cancer are routinely found to be effective in others.

The undersigned respectfully request your continued support for fiscal year 2012 funding of all programs within CDMRP.

Sincerely,

The ALS Association
American Academy of Dermatology Association
American Association for Cancer Research
American Cancer Society Cancer Action Network
American College of Gastroenterology
American College of Surgeons Commission on Cancer
American Congress of Obstetricians and Gynecologists (ACOG)
American Gastroenterological Association
American Society for Gastrointestinal Endoscopy
The American Legion
Aplastic Anemia & MDS International Foundation
Arkansas Ovarian Cancer Coalition
Arkansas Prostate Cancer Foundation
Asian & Pacific Islander American Health Forum
Association of American Cancer Institutes
Autism Speaks
Cancer Support Community
Caring Together, Inc.
Celma Mastry Foundation for Ovarian Cancer Research Inc.
Charlene Miers Foundation for Cancer Research
Children’s Cause for Cancer Advocacy
Children's Tumor Foundation
Chris4Life
Colon Cancer Alliance
Colon Cancer STARS
Colorado Ovarian Cancer Alliance
CureSearch for Children's Cancer
Disabled American Veterans
Fight Colorectal Cancer
Friends of Cancer Research
FORCE: Facing Our Risk of Cancer Empowered
Georgia Ovarian Cancer Alliance, Inc.
Get Your Rear In Gear
GRACE'S
HERA Women's Cancer Foundation
Hope for Heather
ICAN - International Cancer Advocacy Network
Intercultural Cancer Council Caucus
International Myeloma Foundation
Kaleidoscope of Hope Foundation
Kidney Cancer Association
Leukemia & Lymphoma Society
Linda Young Ovarian Cancer Support Program, Benedictine Hospital
LIVESTRONG
Lung Cancer Alliance
Lupus Foundation of America, Inc.
Lymphoma Research Foundation
Malecare Cancer Support
Melanoma Research Foundation
Men's Health Network
Minnesota Ovarian Cancer Alliance, Inc.
MIOCA (Michigan Ovarian Cancer Alliance)
Multiple Myeloma Research Foundation
National Alliance of State Prostate Cancer Coalitions (NASPCC)
National Brain Tumor Society
National Coalition for Cancer Survivorship
National Lung Cancer Partnership
National Marrow Donor Program
National Multiple Sclerosis Society
National Patient Advocate Foundation
Neurofibromatosis, Inc. Arizona
Neurofibromatosis, Inc. California
Neurofibromatosis Midwest
Neurofibromatosis, Inc., Network
Neurofibromatosis, Inc., Northeast
NF Inc. Minnesota
NF, Inc. Michigan
Nine Girls Ask
OASIS of Southern California
Olympus America Inc.
Oncology Nursing Society
Ovacome Ovarian Cancer Support and Advocacy of Tampa Bay
Ovar’Coming Together
Ovarian and Breast Cancer Alliance of Washington State
Ovarian Awareness of Kentucky
Ovarian Cancer Advocacy Alliance
Ovarian Cancer Alliance of Arizona
Ovarian Cancer Alliance of California
Ovarian Cancer Alliance of Florida
Ovarian Cancer Alliance of Greater Cincinnati
Ovarian Cancer Alliance of North Florida, Inc.
Ovarian Cancer Alliance of Ohio
Ovarian Cancer Alliance of Oregon and Southwest Washington
Ovarian Cancer Coalition of Greater California
Ovarian Cancer National Alliance
Ovarian Cancer Orange County Alliance
Prevent Cancer Foundation
Preventing Colorectal Cancer.Org
Prostate Cancer Foundation
Prostate Cancer International
Prostate Conditions Education Council
R.O.A.R.!
Sandy Rollman Ovarian Cancer Foundation, Inc.
Sarcoma Foundation of America
SHARE: Self-Help for Women with Breast or Ovarian Cancer
Society for Gastroenterology Nurses and Associates (SGNA)
Society of Gynecologic Oncology
The Teal Tea Foundation
Teal Tulips (formerly R.O.C.C.S.)
Texas Neurofibromatosis Foundation
Tuberous Sclerosis Alliance
United Ostomy Associations of America
Us TOO International
Us TOO - Richmond , Va Group
Vietnam Veterans of America (VVA)
Virginia Prostate Cancer Coalition
Washington State Neurofibromatosis Families
Wisconsin Ovarian Cancer Alliance
Women Against Prostate Cancer
Women’s Cancer Awareness Group
Y-ME National Breast Cancer Organization
You'll Never Walk Alone
ZERO — The Project to End Prostate Cancer

CDMRP Survives House Approp’s Committee– but Many Programs Including GWI, ALS, MS Would be Cut by 20 Percent

 

(www.91outcomes.com) -- The full House Appropriations Committee met today to markup the FY12 Defense Appropriations bill.  

Despite many rumors that the acclaimed Congressionally Directed Medical Research Program (CDMRP) would be eliminated, there were no CDMRP-related amendments during today’s markup.  It is certainly possible that all the Hill advocacy by dozens of health organizations over the last several weeks made the difference in preventing that.

However, under the House plan, there would be many changes to the previously successful CDMRP programs.  The final FY12 Defense Appropriations Bill as recommended by the Full Committee included the following:

1.      Several existing CDMRP programs would not be funded at all: most notably the sort of catch-all Peer Reviewed Medical Research Program; Neurofibromatosis; Pain Management; Global Deployment of the Force medical research; Armed Forces Institute of Regenerative Medicine; and SBIR to the core funded RDT&E.

2.      Two programs with the most direct military relevance would see 25% increased funding: Traumatic Brain Injury and Psychological Health (increased from $100m to $125m); Orthopedic (from $24m to $30m).

3.      Three new programs were created: Hemorrhage Control; Restorative Transplantation; and, a Joint Warfighter Medical Research Program -- totaling $75m.

4.      The other 17 programs funded in FY11 would be continued but cut by 20%. Despite the most direct military relevance, these included Spinal Cord Injury, Vision, Gulf War Illness, and Alcohol and Substance Abuse Disorders.

FY11 appropriations first, followed by the FY 12 Full Appropriations Committee Bill Recommended Amounts:

1.      ALS $8,000 -- $6,400
2.      Armed Forces Institute of Regenerative Medicine $4,800 -- -0-
3.      Autism Research $6,400 -- $5,100
4.      Bone Marrow Failure Disease Research Program $4,000 -- $3,200
5.      Duchenne Muscular Dystrophy $4,000 -- $3,200
6.      Global HIV/AIDS Prevention $10,000 -- $8,000
7.      Traumatic Brain Injury and Psychological Health $100,000 -- $125,000
8.      Global Deployment of the Force medical research funding -Department of Defense requested transfer to maintain full funding for the program $125,000 -- -0-
9.      Gulf War Illness Peer-Reviewed Research Program $8,000 -- $6,400
10.     Multiple Sclerosis $4,800 -- $3,200
11.     Peer-Reviewed Alzheimer Research $15,000 -- $12,000
12.     Peer-Reviewed Breast Cancer Research Program $150,000 -- $120,000
13.     Peer-Reviewed Cancer Research Program $16,000 -- $12,800
14.     Peer-Reviewed Lung Cancer Research Program $12,800 -- $10,200
15.     Peer-Reviewed Orthopedic Research Program $24,000 -- $30,000
16.     Peer-Reviewed Ovarian Cancer Research Program $20,000 -- $16,000
17.     Peer Reviewed Vision research in conjunction with the DoD Vision Center of Excellence $4,000 -- $3,200
18.     Peer-Reviewed Prostate Cancer Research Program $80,000 -- $64,000
19.     Peer-Reviewed Spinal Cord Research Program $12,000 -- $9,600
20.     Research in Alcohol and Substance Use Disorders $5,200 -- $4,500
21.     SBIR to the core funded RDT&E $1,200 -- -0-
22.     Tuberous Sclerosis Complex (TSC) $6,400 -- $5,100
23.     Pain Management Task Force Research $4,000 -- -0-
24.     Peer Reviewed Medical Research Program $50,000 -- -0-
25.     Neurofibromatosis Research $16,000 -- -0-

New for FY12:

1.      Hemorrhage Control -- $10,000
2.      Joint Warfighter Medical Research Program -- $50,000
3.      Restorative Transplantation Research Program -- $15,000

**UPDATE from Katie Weyforth Vanlandingham of Van Scoyoc Associates: Neurofibromatosis was funded (located in a different part of the bill than the other programs) and like most of the other CDMRP programs took at 20% cut from FY11. The Peer-reviewed medical research program is usually only funded in the Senate bill (and then ends up in the conference report) because they do not individually fund most of the CDMRP programs in their bill.
--

Anthony Hardie
Madison, Wis.

New Study Says Sleep Key to Cognitive Performance

(91outcomes.com) – A new study published in the current edition of the Journal of Sleep Research shows that proper sleep has a profound impact on the ability to learn.

Disturbed or dysfunctional sleep is a commonly reported symptom of Gulf War Illness (GWI), Post-Traumatic Stress Disorder (PTSD), and Traumatic Brain Injury (TBI) –- relatively common disorders among veterans of the last two decades of military service.

According to a USA Today article by Randy Dotinga about the study:

The research doesn't prove that sleep will help you learn more effectively. But it does provide more evidence that your brain doesn't just rest and dream when you're asleep, said study co-author Rebecca Spencer, an assistant professor at the University of Massachusetts at Amherst.

Dotinga’s article about the study suggests that important integration of learning takes place during sleep:

Sleep researcher Michael Anch, an associate professor at Saint Louis University, said the study "emphasizes the growing awareness of the importance of sleep for optimal cognitive functioning."

"This study is consistent with other studies suggesting that sleep allows you to integrate learned information from various brain regions, which is not allowable by instant decisions," Anch said. "This gives credence to the notion that if you have a decision to make, sleep on it!"

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---Anthony Hardie, Madison, Wis.

Gulf War Health Research Meetings to be Held in Wash., DC June 27-28

(91outcomes.com) – The next meeting of the U.S. Department of Veterans Affairs Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI) will be held in Washington, DC on June 27-28, 2011 at the VA central office at 811 Vermont Ave., NW. 

Among the presenters are Dr. Nancy Klimas, one of the world’s leading researchers on Chronic Fatigue Syndrome (CFS/ME) and Dr. Lea Steele, past Scientific Director of the RAC-GWVI and the principal author of the groundbreaking 2008 RAC Report demonstrating that GWI is real.  Both Klimas and Steele are among the world’s leading researchers on GWI.

Also presenting is Dr. Beatrice Golomb, a renowned researcher and clinician and the first Scientific Director of the RAC-GWVI, who will be presenting the results of the first positive treatment trial for Gulf War Illness.  The study, funded by the acclaimed Congressionally Directed Medical Research Program (CDMRP), finds that Coenzyme Q10 is effective at the mitochondrial level in helping to relieve some GWI symptoms.

Other distinguished presenters include:  Dr. Polly Matzinger of the National Institutes of Health, NIAID; Dr. Gordon Broderick of the University of Alberta, who works closely with Dr. Klimas and Dr. Steele; and, Dr. Scott Panter of the San Francisco VA Medical Center.

VA officials from the Office of Research and Development will also be presenting, including Dr. Timothy O’Leary, Dr. William Goldberg, and
Dr. Joseph Salvatore. 

A committee discussion on the new comprehensive plan for GWI research, which has been developed following a conference with the VA Gulf War Steering Committee, will take up most of the second day of the RAC-GWVI’s meetings.

The tentative RAC-GWVI agenda is as follows.  All meetings are open to the public and public input is both welcome and encouraged during the scheduled public input sessions on both days of the meetings.

The final agenda will be posted at:  http://www.va.gov/RAC-GWVI/Meetings.asp 

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Monday, June 27, 2011

Sonny Montgomery Conference Room, 2nd Floor, U.S. Department of Veteran Affairs, 810 Vermont Avenue, Washington, DC

8:00 – 8:30 Informal gathering, coffee

8:30 – 8:35 Welcome, introductory remarks, Mr. Jim Binns, Chairman, RAC-GWVI

8:35 – 9:30 Altered immune functions in Gulf War illness and potential therapies, Dr. Nancy Klimas, Miami VA Medical Center

9:30 -10:30 From Cytokines to Cells to Gene Expression: An Integrative Approach to the Study of Gulf War illness, Dr. Gordon Broderick, University of Alberta

10:30 – 10:45 Break

10:45 – 11:45 The Danger Model of innate immune system activation, Dr. Polly Matzinger, National Institutes of Health, NIAID

11:45 – 12:30 Intranasal administration of toxicants and therapeutics, Dr. Scott Panter, San Francisco VA Medical Center

12:30 - 1:30 Lunch

1:30 – 2:15 Complex factors in the etiology of Gulf War Illness, Dr. Lea Steele, RAC-GWVI

2:15 – 3:00 Co-Enzyme Q10 treatment trial for Gulf War illness, Dr. Beatrice Golomb,  RAC-GWVI

3:00 – 3:45 Gulf War Pre-911 Report overview, Mr. Joseph Salvatore, VA Office of Policy and Planning

3:45 – 4:00 Break

4:00 - 4:30 Federal Advisory Committee Ethics Training, Mr. Jonathan Gurland, VA

4:30 – 5:00 Update of VA Gulf War research funding, Dr. William Goldberg, VA Office of Research and development

5:00 – 5:30 Public comment

Tuesday, June 28, 2011

***PLEASE NOTE DIFFERENT MEETING LOCATION***
Lafayette Building, 811 Vermont Ave., NW, Room 1143, Washington, DC

8:00 – 8:30 Informal gathering, coffee

8:30 - 9:30 Update of VA Gulf War Cooperative  Studies, Dr. Timothy O’Leary, VA Office of Research and development

9:30 – 10:15 Committee Discussion: VA Gulf War Comprehensive Research Strategy, led by Mr. Jim Binns, Chairman, Dr. Roberta White, Scientific Director, RAC-GWVI

10:15 – 10:30 Break

10:30 – 12:00 Committee Discussion (continued): VA Gulf War Comprehensive Research Strategy

12:00 – 12:30 Public comment

12:30 Adjourn

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--Anthony Hardie, Madison, Wis.

New CDMRP Study Shows Brain Blast Injuries Differ from Concussions, May be New Form of Disease

(91outcomes.com) -- A new study by Dr. Christine McDonald and colleagues funded by the Congressionally Directed Medical Research Program (CDMRP) and published in The New England Journal of Medicine (NEJM) has found that brain injuries from blasts differ from athletic and other concussions, are more extensive and subtle than previously known, and may even constitute an entirely new disease.

While blast injuries are the “signature” wound of the current wars in Iraq and Afghanistan, like the recognition of PTSD after the Vietnam War, new recognition of brain blast injuries has the potential to explain some military service members’ unexplained illnesses going back as far back in history as high explosives have existed.

According to an article by Gregg Zaroya -- a respected military writer with USA Today (itself a world leader in reporting military and veterans news often overlooked by other publications) -- the McDonald study determined the following:

Mild brain injuries from an explosion  appear to be different and more extensive than mild brain injuries that result from playing sports.

The study looked specifically at how blasts damage the brain's wiring. Researchers found neural pathways disrupted in areas of the brain that are not affected in civilian cases of mild brain injury — such as from sports injuries or car accidents.

These were areas of the brain regulating emotions and impulsive behavior and governing coordination, movement, organization and planning, says David Brody, a neurologist who co-authored the study.

The axonal brain injuries  -- damage at the level of the basic nerve cell building block of the brain and nervous system -- were not visible using standard CT scans.  However, using research-oriented DTI scanning, the damage at the level of the axons was clearly visible and confirmed the researchers’ hypothesis.

According to a New York Times article about the study by health writer Denise Grady:

This study “may help explain why some military personnel exposed to blasts have symptoms of brain injury even though their CT and M.R.I. scans look normal.”

The study is yet another important success for the veteran-acclaimed Congressionally Directed Medical Research Program (CDMRP), which also funds treatment studies for Gulf War Illness (GWI) through annual lobbying efforts of veterans’ advocates with Congress, which must provide funding each year for the various CDMRP programs.

--Anthony Hardie, Madison, Wis.

Promising New Treatment for GWI Sinusitis Funded for CDMRP Study

 

(91outcomes.com)  A new treatment to help relieve some of the worst of the chronic sinusitis symptoms that affect Gulf War Illness patients has been funded for an important study by the acclaimed Congressionally Directed Medical Research Program (CDMRP).

The study is being led by Dr. David Rabago, M.D. at the University of Wisconsin-Madison, and is expected to begin accepting study subjects this year, once all the various study protocols have been approved.

The study is of a nasal spray, called Xlear, which is available over the counter though it’s often difficult to find.

Please contact me at admin@91outcomes.com if you’re interested in participating.

Below is more information on this promising new treatment.

--Anthony Hardie

 

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Common Questions – Xlear Nasal Spray

Are there any clinical studies showing how effective Xlear is in preventing upper respiratory infections and other problems in the upper airway?

(Answer by Dr. A.H. "Lon" Jones D.O.) While there is clinical experience and clinical trials are being done, they are not pursued as much as they are in pharmaceutical trials because the results could not be used. This demands an explanation as to why not.

Xlear works like soap in the nose. Everyone knows that soap is the most effective way we know to prevent the spread of communicable disease. We know this because our doctors tell us, the U.S.A. Center for Disease Control tells us and the television tells us. But there have been no clinical trials to prove this claim.

Soap and water wash bacteria from the hands so they don’t get into our eyes when we rub them, or our nose. It is a very effective means of blocking the spread of infectious disease, but for the soap industry to make the health claims that are clearly appropriate would make soap into a drug and under the control of the Food and Drug Administration.

Like soap and water for the hands, Xlear is just an effective and natural way of cleaning the nose. It is not a drug and the company marketing it makes no drug claims. But if you are handling bacteria all day, and we all are whether we like it or not, you may find it useful to wash your hands occasionally; and if you are breathing contaminated air you may find washing your nose just as beneficial.

How do you pronounce "XLEAR"?
The "X" in the name Xlear is representative of xylitol, the primary active ingredient in Xlear Nasal Spray. The proper pronunciation is "CLEAR".

What is Xylitol?
Xylitol is a natural sugar. It is derived from sources such as fruits, vegetables, corn stalks/husks/cobs, birch wood, nutshells, etc. Xylitol is classified as a sugar alcohol and small amounts are produced in the human body.
Xylitol has been shown in numerous clinical studies to provide substantial health benefits to the user. The chemical structure of xylitol prevents bacteria from metabolising and digesting the xylitol after ingesting it, reducing the production of by-products that enable the bacteria to adhere to nasal tissues.

What is Xlear Nasal Spray?
Xlear Nasal Spray is an all-natural product that helps the body's natural cleaning process wash away bacteria, pollens, dander, moulds, allergens and other irritants that cause nasal congestion. Xlear contains xylitol, a naturally occurring substance and one of bacteria's natural enemies. When certain harmful bacteria enter the body, they attach to the membranes of the nose and throat. Xlear Nasal Spray merely flushes harmful bacteria and pollutants away.

What are the benefits of Xlear Nasal Spray?
Over 90% of all infection-causing bacteria enter through the nose. Clinical studies have shown that Xlear Nasal Spray with xylitol, when used regularly can substantially reduce sinus and upper respiratory infections including otitis media (middle ear infections) by reducing the ability of harmful bacteria, pollens, allergens and other irritants from adhering to nasal tissue.

Is it safe for children/infants/ or use during pregnancy?
Xlear Nasal Spray is all-natural, drug free and non-habit forming.* Xlear contains purified water, saline and grapefruit seed extract-all found in over-the-counter nasal moisteners that have been used for years. Xylitol is the key ingredient that makes Xlear Nasal Spray so revolutionary and effective.
* [For some strange reason, in South Africa we are not allowed to make the claims - “drug-free” or “all-natural” - unless you literally pick a peach and squeeze it into a bottle! Saline solution is made from purified water and salt, both of which are natural. GSE is extracted from Grapefruit seeds, also natural, and xylitol is produced every day in your own body! An unnatural drug? You make up your own mind...]

The World Health Organization and the FDA have given xylitol their safest ratings for food additives. Babies and small children can use Xlear Nasal Spray without restriction. If you have any concerns or questions before taking this or any other over-the-counter product, consult first with your physician.

Will it interfere with any other medication that I am taking?
Xlear Nasal Spray contains only natural ingredients and no negative interactions are known. However, always consult with your physician if you have any questions before using this or any other over-the-counter product.

How is it used?
Tilt your head forward and seal off the nasal passage by closing off one nostril. Close your mouth and give the bottle a quick, firm squeeze, inhaling deeply to pull the mist into the sinus cavities. Do this once or twice for each nostril. Xlear Nasal Spray should be administered to infants and children in the same way. If the infant or child is resistant to this method of application, have him or her lie down and place two drops of Xlear Nasal Spray in each nostril.

How often should I use Xlear Nasal Spray?
For the first 2 to 4 weeks of Xlear Nasal Wash usage, adults and children should administer it 3 to 4 times a day. After the 1st month, it should be used twice a day as a preventative measure.

For infants and small children who are in day care, exposed to infectious bacteria or suffer from chronic middle ear infection, Xlear Nasal Spray should be administered 3 to 4 times a day. Please click here to read an article on Child Ear Infections by Gerry Bozeman, a Supervisory Registered Play Therapist.

What can I expect after I begin using Xlear Nasal Spray?
Antihistamines and decongestants are widely used for temporary relief of nasal stuffiness and other symptoms of sinus problems and infections - turning off the body's natural washing process. This provides temporary relief but soon wears off and sets up a cycle of dependence. Xlear Nasal Spray thins the mucous and assists the body's natural process of clearing the nasal passages and washing away bacteria, allergens, pollen and other pollutants. When you begin using Xlear, you may experience an increase in mucous flow, indicating that the washing process is taking place.

Where can I purchase Xlear Nasal Spray?

http://www.swansonvitamins.com/Search?keyword=xlear&doSearch=true&ntt=&n=0&ntk=Level1&x=0&y=0

Will the Xlear Nasal Spray freeze in the mail during shipping?
The xylitol and saline in the Xlear lower the freezing point to about 5-10 degrees below zero degrees Celsius. Freezing does not affect Xlear. (Fortunately, we live in Sunny South Africa, so freezing is unlikely to occur, even if you do live in Sutherland!)

What is the shelf life of Xlear Nasal Spray?
The minimum shelf life for Xlear Nasal Spray is two years.

Vote to Fund Neuro-Immune Disease and CFS Research

The Chase Community Giving Foundation is currently sponsoring a Vote to Fund charities, with $500,000 to the most popular!

You can vote for up to five charities using Facebook!

Please take a moment to vote for these two, today – the contest ends tomorrow, May 25, 2011 so hurry!

Neuro-Immune Disease Research

The Whittemore Peterson Institute for Neuro-Immune Disease (WPI) was created to answer a critical need for discovery and medical treatments for those with serious illnesses that impact the body and the brain.

These often debilitating and life-long diseases, including M.E., CFS, fibromyalgia, post Lyme disease, GWI and autism, have too few medical solutions. WPI continues to make significant strides through the work of our innovative research program. Translating novel research into effective patient treatments for millions around the world will begin with the opening of our 10,000 sq. ft. medical facility.

Here we can engage in revealing clinical trials and provide onsite care to those who are unable to pay. We require money for initial expenses and to establish a patient fund. WPI’s commitment to discovery has already inspired much hope worldwide. Now it is time to put hope into action by offering meaningful patient care to these underserved populations.

 

 

Chronic Fatigue Syndrome Research

 

In spite of its odd-sounding name, chronic fatigue syndrome (CFS) is as disabling as cancer, multiple sclerosis and late HIV disease. As many as 17 million children and adults around the world have CFS, and we still don’t understand its causes.

To end the suffering CFS inflicts, the CFIDS Association of America is building a critical mass of rigorous research that validates the biological basis for CFS and leads to better ways to diagnose and treat it. We’re putting research first to achieve the vision of a future in which the life-altering disability, stigma and isolation of CFS no longer exist.

Your vote will help us award grants to support new research studies exploring diagnostics and treatments; expand our SolveCFS BioBank with more samples and clinical information on patients and healthy volunteers; and build a data-sharing platform to help researchers aggregate and analyze information using powerful bioinformatics tools. Based in Charlotte, NC, our work has worldwide impact.

 

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If the links above don’t work, then Here’s how to vote:
 
#1.Go to the Chase Community Giving Facebook page: http://www.facebook.com/ChaseCommunityGiving
 
#2. "Like" this page
 
#3. Then click here http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-fo
 
#4. And then VOTE! by voting here
http://apps.facebook.com/chasecommunitygiving/charities/205904991-whittemore-peterson-institute-for-neuro-immune-disease

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Please forward this message to everyone you know.

Five Ways to Effectively Treat Chronic Pain Symptoms

(www.91outcome.com) -- Chronic pain can be debilitating.  Sadly, it affects tens of thousands of veterans of the 1991 Gulf War suffering from Gulf War Illness and related chronic health conditions.  Worst of all, many of these patients report not receiving effective treatments for these debilitating symptoms.

There are many ways of treating pain beyond over the counter NSAIDs like Tylenol, Advil, or Motrin, which are often reported to not help at all when dealing with debilitating chronic pain.

And, before resorting to the effective, but also addictive and potentially mind-numbing narcotic or opioid controlled substance prescription pain drugs like Oxycodone, Hydrocodone, Oxycontin, or even Morphine and its derivatives, there are a lot of other options.

1.  For fibromyalgia, a presumptive service-connected condition for Gulf War veterans, there are now several approved prescription medications that have been proven to help many affected. 

These are:

• Savella (Milnacipran HCl);
•  Lyrica (Pregabalin), and
• Cymbalta (Duloxetine). 

2. Neuropathic and neurologic pain (including burning pain, tingling, twitching, numbness, buzzing, electric shock feelings, parasthesias, Restless Leg, etc.) is increasingly being reported in many Gulf War veterans (including myself). 

In fact, one current CDMRP study is investigating the prevalence of Small Fiber Peripheral Neuropathy in Gulf War veterans with chronic pain in their extremities, likes feet, legs, hands, and/or arms.

In addition to trying the prescription drugs listed above, neuropathic and neurologic pain are often successfully treated with a number of types of prescription medications normally prescribed for Parkinson's Disease (PD) called non-ergoline dopamine agonists. 

Not only do these medications often effectively help keep these terrible neuro symptoms at bay, they also can have the welcome side effect of countering the negative sexual function side effects caused by some of the other medications listed here.

The non-ergoline dopamine agonists include:

• Ropinirole (Requip, Ropark, Adartrel, Ropinotergotirole);
• Rotigotine (Neupro); and
• Pramipexole (Mirapex, Mirapexin, Sifrol).

Additionally, medications that affect GABA, a brain chemical, may help. In addition to Lyrica (Pregabalin), listed above, this includes:

• Gabapentin (Fanatrex, Gabarone, Gralise, Neurontin, Nupentin)

3.  Depression and Anxiety.  Surprisingly to many people, drugs to treat depression and anxiety affect the same parts of the brain involved in some types of pain and so may help relieve pain as well. 

Tricylcic antidepressants (TCAs), including Amytriptyline (Elavil, Endep, Dohme, Sharpe), are often prescribed for fibromyalgia and neurologic pain before trying the more advanced (and more expensive) other treatments listed above.

SSRI’s, which affect the Serotoin levels in the brain that are also known to be associated with pain, may also be helpful. 

4.  Sleep.  Finally, getting restful sleep is critically important to keeping pain at bay and keeping other GWI symptoms at their minimum. 

One medication being used frequently off-label in Iraq and Afghanistan veterans to help ensure restful sleep is Quetiapine (Seroquel).  

This medication is also sometimes prescribed to help with Restless Leg Syndrome.  

I take it too, and while there are definitely side effects, I’ll take the trade off any day.

5.  Combinations of these.  Like for many people with chronic pain, in my case a combination of several of these -- plus a LOT of rest and carefully safeguarding against any form of physical or emotional stress -- is what helps keep the pain and neuro symptoms at bay.

For me, Seroquel has been a life saver in getting me to sleep, keeping me asleep, and waking up feeling rested again after nearly two decades of not feeling rested after my terribly fragmented sleep.  I combat the weight gain with an over the counter supplement called CLA, available online from www.swansonvitamins.com. 

And the PD medications are genuinely effective in keeping my worst neuro burning and other symptoms at a minimum.  If I miss just one day, wow am I reminded how well they work with the immediate recurrence of the worst of the neuro symptoms!

--Anthony Hardie

UPI: Sand Contaminated with Heavy Metals, Bacteria, Fungi May Have Caused Illness in Some Gulf War Troops

 

The UPI is reporting a news story that microfine sand particulate matter may be at the root of some Gulf War veterans’ illnesses.

According to the story:

U.S. Navy Capt. Mark Lyles, chairman of medical sciences and biotechnology at the Center for Naval Warfare Studies at the Naval War College in Newport, R.I., and colleagues found dust particles collected in Iraq and Kuwait contain 37 metals, including aluminum, lead, manganese, strontium and tin -- heavy metals linked to neurological disorders, cancer, respiratory ailments, depression and heart disease, USA Today reported. 

The dust contains 147 different kinds of bacteria, as well as fungi, the scientists say.

Read more: http://www.upi.com/Health_News/2011/05/12/Dust-may-help-explain-military-illness/UPI-77391305258812/#ixzz1MF1OgwCq

I Don’t Know What It’s Like

VA: Personalized Medicine and the Million Veteran Program

Personalized Medicine and the Million Veteran Program

By Timothy O'LearyMay 4, 2011

Imagine your next visit to the doctor’s. After reviewing your health history and your VA electronic medical record, she says: “Your blood pressure medicine isn’t working quite as well as I would like, but I know what will work for you!”

How can she be so certain?

The answer could lie in a new VA Research initiative that will help clinicians personalize medical treatment. Called the Million Veteran Program, the initiative is being launched today on a national scale as part of VA Research Week. Through the anticipated participation of as many as one million Veteran volunteers, MVP will help researchers better understand the effects that genes have on health and illness, with the ultimate objective of improving Veterans’ health care. By collecting, analyzing, and comparing a rich mix of Veteran patient data—genetic profile, health history, lifestyle–MVP will help customize health care in a way that was once unimaginable, bringing us closer to personalized medicine for Veterans, and ultimately, all Americans.

It must be emphasized that MVP is first and foremost a partnership between Veterans and VA. As Dr. Joel Kupersmith noted earlier this week in VAntage Point, it is an example of the many types of research collaborations we celebrate as part of Research Week.

Over the next five to seven years, Veterans who choose to participate in MVP will help to create the world’s largest research database of genetic, military exposure, and health information. This database, built on a foundation of protecting Veteran privacy, will be used for studies that lead to new ways of preventing and treating illnesses in Veterans and all Americans. As part of this research partnership, Veterans are being asked to provide a blood sample, from which their DNA will be extracted; complete a health information survey; and allow access to their medical record. Using the data collected, researchers will be able to study how genetic variations, environmental factors, and military service are associated with illness and health.

VA has been conducting genomic research for a number of years, and genetic tests are already used clinically, for example, to determine if Veterans who have blood clots in the legs are predisposed to developing them again, and to help diagnose and treat colon and breast cancers and other diseases. Importantly, MVP will provide a foundation upon which VA investigators can design and conduct future studies that use genetic, environmental, and military service information to help prevent disease and improve medical care.

Three factors are key and cannot be overemphasized. First, participation in MVP is entirely voluntary. Further, a decision to participate, or not participate, will not in any way affect Veterans’ access to health care or benefits.

Second, as I mentioned earlier, data security is a top priority. Samples collected from Veterans for MVP will be labeled with a code instead of their name, address, date of birth or social security number. Researchers who are allowed to analyze these samples will not have access to this type of personal information.

Third, this research will be carried out in a culturally sensitive manner that respects ALL Veterans and their ethnic and cultural identity.

MVP is being rolled out in phases and will ultimately be open to participation by all Veterans receiving care in the VA health care system. Today there are more than 20 sites, with more coming online each month.

You can learn more about MVP at Thursday’s Research Forum, when I moderate a panel on this topic beginning at 10:00am. I hope you’ll consider joining us in Room 230 VACO, or listen via internal broadcast.

In addition to his role as Deputy CRADO, Dr. O’Leary, is Director, Office of Clinical Science Research and Development (CSR&D. His clinical and research expertise is in the use of molecular genetics for diagnosis and treatment of disease.

--SOURCE:  VA VAntage Point, http://www.blogs.va.gov/VAntage/?p=2826