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Sunday, February 27, 2011

Connecticut reaching out to Persian Gulf War and other veterans

 

Dr. Linda S. Schwartz, commissioner of the Connecticut Department of Veterans’ Affairs is urging all citizens to take a moment to remember the state’s veterans of the Persian Gulf War, also known as the First Gulf War. This year marks the 20th anniversary of the war authorized in response to Iraq’s aggression against Kuwait in the summer of 1990.

Twenty years ago this month the Persian Gulf War entered its final decisive phase of “Operation Desert Storm” — the ground offensive led by U.S. and Coalition forces that would drive Saddam Hussein’s forces from Kuwait in just 100 hours.  The war began on Jan. 16, 1991 with the most aggressive and strategic air campaign against military targets in Iraq and Kuwait in modern military history. Coalition Forces liberated Kuwait City on Feb. 26 and President George H.W. Bush ordered a unilateral cease fire effectively ending combat operations on Feb. 27. A formal cease-fire agreement formally ending the War was signed on April 6, 1991.

Over 532,000 U.S. forces served as part Operation Desert Storm. There were a total of 147 U.S. battle deaths during the Persian Gulf War, 145 non-battle deaths, and 467 wounded in action.

The Persian Gulf War also marked the first significant Presidential Call-up of the U.S. Reserve components, including the National Guard, since the Korean War.  Several units of the Connecticut Army National Guard were activated and saw service in support of the First Gulf War. 

“This is an important time in our history to pause and salute the veterans of the Gulf War,” said Dr. Schwartz.  “This brief but important war marked this nation’s return to a heavy reliance on our Reserve soldiers, sailors, airmen and marines.  Citizen-soldiers from around our state stepped forward and deployed with their units both in support of the force’s build-up, war fight, and re-deployment.

“Now 20 years later — as these veterans reach their 40s, 50s, and 60s — many may be dealing with the lingering, stressful impacts of war and deployments.  There are also veterans from this First Gulf War who still serve in uniform today and have subsequently served in Afghanistan and Iraq. It is vital that our Gulf War veterans reach out for help and secure the benefits they have earned. Our Department is ready and eager to serve them in any way possible.”

The Connecticut DVA has district advocacy offices staffed with accredited benefit counselors in Bridgeport, Newington, Norwich, Waterbury and West Haven.  DVA benefit counselors are able to help veterans access Federal VA benefits, including applying for disability compensation, as well as connect veterans with all available state benefits and assistance.

Contact and location information for DVA district offices is available at www.ct.gov/ctva. Veterans may also call the agency’s toll-free Veterans Info Line at 1-866-9CT-VETS (1-866-928-8387) for further information and assistance.

It is estimated that there are 40,800 Gulf War-era veterans currently living in Connecticut, which includes the veterans of the wars in Iraq and Afghanistan.

Friday, February 25, 2011

Gulf War Illness Medical Research Funding Pre-Announcement

Department of Defense Gulf War Illness Research Program:  Anticipated Funding Opportunities for Fiscal Year 2011 (FY11)

The Department of Defense Gulf War Illness Research Program (GWIRP) is administered by the US Army Medical Research and Materiel Command (USAMRMC) through the Office of Congressionally Directed Medical Research Programs (CDMRP).

Congressional funds for the Fiscal Year 2011 (FY11) GWIRP have not yet been appropriated. However, the GWIRP is providing information in this pre-announcement to allow investigators time to plan and develop applications. The GWIRP anticipates offering the following award mechanisms for FY11 pending availability of congressional funds. This pre-announcement should not be construed as an obligation by the government.

Investigator-Initiated Research Award
Independent investigators at all academic levels are eligible to apply.

  • Supports new ideas in basic and clinical developmental research focusing on Gulf War Illness (GWI).
  • Preliminary data are not required, and if provided, do not necessarily have to come from the GWI research field.
  • Clinical trials are not allowed under this mechanism.
  • The maximum allowable funding for the entire period of performance is $600,000 for direct costs.
  • The maximum period of performance is 3 years.
  • More cost-effective studies not requesting the full funding amount are encouraged.

Innovative Treatment Evaluation Award
Independent investigators at all academic levels are eligible to apply.

  • Supports exploratory or small-scale studies evaluating potential treatments not previously studied in GWI.
  • Pilot Phase II or Phase I/II trial combinations are permitted.
  • Preliminary data are not required, though proposed studies must be supported by logical rationale.
  • Studies having substantive preliminary/preclinical data should submit to the Clinical Trial Award (see below).
  • The maximum allowable funding for the entire period of performance is $450,000 for direct costs.
  • The maximum period of performance is 3 years.
  • More cost-effective studies not requesting the full funding amount are encouraged.

Clinical Trial Award
Independent investigators at all academic levels are eligible to apply.

  • Supports larger, more definitive Phase II or III clinical trials focusing on treatments for GWI.
  • Preliminary/preclinical data are required indicating potential substantial benefit for veterans with GWI.
  • Pilot or exploratory studies focusing on treatments lacking preclinical/preliminary data should submit to the Innovative Treatment Evaluation Award (see above).
  • The maximum period of performance is 4 years.
  • The maximum allowable funding for the entire period of performance is $1,500,000 for direct costs.
  • More cost-effective studies not requesting the full funding amount are encouraged.

Clinical Trial Development Award
Independent investigators at all academic levels are eligible to apply.

  • Supports preliminary development of a clinical trial including protocol development, regulatory approval, test article purity and formulation, recruitment strategy development, etc.
  • Awardees will be expected to apply to a future GWIRP Clinical Trial Award.
  • The Clinical Trial Development Award does not fund original research, only activities to support planning for a future clinical trial.
  • The maximum allowable funding for the entire period of performance is $100,000 for direct costs.
  • The maximum period of performance is 1 year.

All applications must conform to the final program announcements and application instructions that will be available for electronic downloading from the Grants.gov website. The application package containing the required forms for each award mechanism will also be found on Grants.gov. A listing of all USAMRMC funding opportunities can be obtained on the Grants.gov website by performing a basic search using CFDA Number 12.420.

A pre-application is required and must be submitted through the CDMRP eReceipt website (http://cdmrp.org) prior to the pre-application deadline. Applications must be submitted through the federal government's single-entry portal, Grants.gov.

Requests for email notification of the release of CDMRP program announcements may be sent to help@cdmrp.org. For more information about the GWIRP or other CDMRP-administered programs, please visit the CDMRP website (http://cdmrp.army.mil).

Point of Contact:


VA Issues Responses to RAC Recommendations on Planned National Follow-up Study of Gulf War Veterans

The VA’s Environmental Epidemiology Service (EES), Office of Public Health and Environmental Hazards (OPHEH), offers the following responses to the public comments offered by the Research Advisory Committee on Gulf War Veterans' Illnesses (RAC-GWVI) regarding the planned “Follow-Up Study of a National Cohort of Gulf War and Gulf War Era Veterans."

The public comments provided by the RAC-GWVI were provided as part of the Office of Management and Budget (OMB) 30 day public comment period, in response to an announcement of the proposed study published by the Department of Veterans Affairs (VA) in the Federal Register.

1.  First comment:

“The VA should "suspend current plans to field the Follow-Up Study of a National Cohort of Gulf War and Gulf Era Veterans, the large longitudinal survey under development by VA’s Office of Public Health and Environmental Hazards, pending extensive revisions of the survey instrument."

"The Committee continues to consider longitudinal assessment of the health of Gulf War veterans to be an essential element of the federal Gulf War research effort. Unfortunately, as currently designed, the proposed survey fails to collect data on the most pressing health issues related to Gulf War service, while collecting excessive information on more peripheral concerns.

Major examples include:
- No follow-up on essential elements of VA’s initial survey of Gulf War veterans
- Lack of systematic, comprehensive data on symptoms associated with Gulf War service
- Lack of systematic, comprehensive data on diagnosed medical conditions
- Lack of information on the health of veterans’ family members
- Lack of information on veterans’ use of health care services and treatments"

VA response: The EES appreciates the Committee's interest in this survey and is grateful to committee members for taking the time to provide comments. The panel of 30,000 Gulf War and Gulf Era Veterans who will be contacted as part of the planned survey were initially contacted as part of EES longitudinal studies in 1995-1997 (the National Health Survey of Persian Gulf Era Veterans), and many were resurveyed 10 years later in 2003-2005 (the Longitudinal Health Study of Persian Gulf War Era Veterans) (Kang et al., 2000; Kang et al., 2009). The planned survey represents the second time that the overall panel of surviving Gulf War and Gulf Era Veterans will be re-contacted for a follow-up survey. The Longitudinal Health Study of Persian Gulf War Era Veterans, which is an active IRB-approved protocol of this same panel of Veterans, includes linkages of survey data with VA medical records databases. The proposed survey includes questions about recent hospitalizations and outpatient clinic visits in the past 12 months (questions 5a, 5b, 6a, 6b). These questions are retained from previously administered studies and provide open text response fields. Thus, many of the Committee's concerns (for example, the need for comprehensive data on diagnosed medical conditions and information on Veteran's use of health care services and treatments) are actively being addressed by EES investigators.

In developing the survey instrument for the planned survey, EES researchers carefully considered existing questionnaires including the survey instruments used for the 1995-1997 and 2003-2005 surveys (OMB numbers 2900-0558 and 2900-0637). All questions pertaining to diagnosed medical conditions and symptoms associated with Gulf War service, which were successfully used in the 2003-2005 survey, were retained in the newly developed questionnaire.

These include 46 questions on physician-diagnosed medical conditions (questions 8a items 1-7, 8b, 8c Items 8-23, and 8d) and more than 47 questions on symptoms (questions 14a item 1-8, 14b items 1-8), question 19, and question 22 items a-p, and question 26 items a-g. Three additional symptoms (wheezing in your chest, problems with coughing, a fever or chills), which had been included in the 1995-1997 survey, were also included In the planned survey. In addition, EES researchers added a series of questions on amyotrophic lateral sclerosis (ALS), irritable bowel syndrome (IBS), and functional dyspepsia (Rome criteria) which were recommended by Cooperative Studies Program collaborators at VA Medical Centers in Durham, North Carolina, and Miami, Florida. The Rome questions on IBS (http://www.romecriteria.org/questionnaires/ have previously been used in surveys of Veterans by EES researchers. In developing the questionnaire, EES researchers have strived to retain questions that are needed to assess the persistence of symptoms over time, and the incidence and prevalence of major medical conditions in this panel of Veterans. Another important consideration was the need to collect updated information about potential confounding variables and effect modifiers about health risk factors (for example, cigarette smoking and alcohol consumption). Another goal was to enhance the questionnaire by including questions on the use of complementary and alternative medicine which were successfully used by EES researchers in the National Health Study of a New Generation of U.S. Veterans, and which were adapted from those used in the Department of Defense (DoD) Millennium Cohort Study. A further goal was to incorporate questions on important womens' health topics which were obtained from National Health and Nutrition Examination Survey (NHANES) questionnaires (http://www.cdc.gov/nchs/nhanes/nhanes_questionnaires.htm). The specific questions on womens' health added to the questionnaire were recommended by experts in the VA OPHEH Women Veterans Health Strategic Health Care Group.

We agree with the Committee that additional information is needed about the health of Gulf War Veteran's family members. However, there is a limit to the number and scope of questions that can be included in a single survey. The literature on survey methodology indicates that response rates are lower when potential respondents are asked to complete an overly lengthy questionnaire. A series of detailed questions on pregnancy outcomes was included in the 1995-1997 questionnaire and those data have generated key findings published in the peer reviewed literature (Kang et al., 2001). A validation study of reported birth defects is ongoing. On average, the members of this panel of Veterans are now in their early 50's and many are likely to be beyond their reproductive years or have adult children. For these reasons, the Committee's recommendation to obtain additional data about the health of Gulf War Veteran's family members should ideally be addressed in a separate research study.

2.  Second comment:

"The Gulf War longitudinal study represents a major commitment of time and funding. It should be designed as an integral part of VA’s new Gulf War research program, and support the objectives of the program. Extensive revisions should be undertaken in conjunction with researchers outside VA who have specific expertise in assessing the health problems of Gulf War veterans, and should be reviewed and approved by the Gulf War Research Steering Committee."

VA response: We are pleased that the Committee has the vision of seeing this follow-up study as an integral part of VA's Gulf War research program. This study was specifically listed among the many research-focused recommendations in the Final Draft Report of the Gulf War Veterans' Illnesses Task Force to the Secretary of Veterans Affairs (March 2010). In developing the scientific protocol and questionnaire, EES researchers consulted with a number of outside experts, reviewed key articles published in the peer-reviewed scientific literature, and reviewed important reports on the health of Gulf War Veterans including the Institute of Medicine Committee on Gulf War and Health 2009 report on "Gulf War and Health: Volume 8: Update of Health Effects of Serving In the Gulf War" and the Research Advisory Committee on Gulf War Veterans' Illnesses 2008 report on "Gulf War Illness and the Health of Gulf War Veterans:  Scientific Findings and Recommendations." The objectives of the planned follow-up survey address many of the recommendations in these reports. For example, the Research Advisory Committee's 2008 report states on page 4 that "Although Gulf War illness is the most prominent and widespread issue related to the health of Gulf War veterans, it is not the only one. Additional issues of importance include diagnosed medical and psychiatric conditions affecting Gulf War veterans…"

The planned survey has been designed by EES investigators, with appropriate consultation with outside experts, on a tight time-table in order to successfully field the survey in conjunction with the 20th anniversary of the end of the 1991 Gulf War and in keeping with plans for follow-up surveys of this panel of Veterans at 10 year intervals. Accomplishments to date have included preparation of the contract acquisition package, scientific protocol, OMB package, draft questionnaire, and contingent approval by the Institutional Review Board (IRB) at the VA Medical Center in Washington, DC. A suspension of current plans to field the survey in early 2011, in order to allow for additional scientific review of the questionnaire by a very broad group of experts, would likely delay the survey by as much as a year and there would be no guarantee that funds would be available to resurrect the survey after such a prolonged and unexpected delay.

A further issue is that EES researchers are active members of a Planning Committee for a large-scale genomics study and biorepository for Gulf War Veterans which is being planned through the VA's Cooperative Studies Program. Lead members of the Planning Committee for the Cooperative Studies Program initiative have reached out to the principal investigators of all known epidemiologic studies of U.S. Gulf War Veterans (including Dr. Lea Steele who is a member of the Research Advisory Committee on Gulf War Veterans' Illnesses) in order to seek ways to re-contact members of the original cohorts. The planned approach is for the EES survey to be fielded beginning in early 2011 and then for the pilot study for the Cooperative Studies Program genomics study and biorepository to be initiated in Summer 2011. A suspension of current plans to field the EES survey in early 2011 would hinder plans for this multi-institutional collaborative initiative.

3.  \Third comment:

"The Committee became aware of the pending survey only through the chance observation by a veteran who noticed a Federal Register posting required by the Paperwork Reduction Act disclosing the existence of the survey. The posting did not include the survey itself. Committee staff then requested and were given a copy of the survey. The Research Advisory Committee and the Gulf War Research Steering Committee should each have been provided the opportunity to review the survey prior to posting."

VA response: We regret any misunderstanding about the process for posting notices about proposed data collection in the Federal Register. The VA publishes notices about planned surveys in the Federal Register in order to comply with OMB requirements and ensure the widest possible distribution. The VA Advisory Committee on Gulf War Veterans 2009 report on "Changing the Culture: Placing Care Before Process" recommends on page 14 that a longitudinal study be conducted" and notes on page 15 that the physical and mental conditions of these Veterans is likely to have evolved over the last 18 years and that there is a need to chart the course of their illnesses over time. These are exactly the types of studies that EES investigators have conducted and are planning to conduct.

4. Fourth comment:

"Without having had the opportunity to undertake an exhaustive review, the Committee notes the following examples of deficiencies to be addressed:

The survey fails to collect the most important types of data required to assess priority health issues specific to Gulf War service, while collecting detailed information in areas that are less pressing. This is reflected, overall, by the relatively few questions that provide data on undiagnosed symptomatic illness and diagnosed medical conditions, compared to the many pages of questions devoted to psychological problems and digestive issues.

Undiagnosed symptoms and symptom complexes are the most prevalent health concern resulting from Gulf War service. The proposed survey collects only limited data on symptoms of selected types. Further, symptoms in different areas are not queried in a consistent way, and are not consistent with symptom data collected in VA’s initial Gulf War survey. As a result, survey data will not provide clear, systematic information either on veterans’ current symptoms or changes in their symptoms over time, and cannot be used to construct a representative case definition for Gulf War illness."

VA response: The Institute of Medicine Committee on Gulf War and Health 2009 report on "Gulf War and Health: Volume 8: Update of Health Effects of Serving In the Gulf War" highlighted the need for studies of irritable bowel syndrome (IBS) and functional dyspepsia in Gulf War Veterans including studies that use symptom-specific criteria (for example, the Rome criteria). IBS has often been considered to be a part of unexplained multi-symptom illness (Kang et al., 2009). As mentioned above, the Rome criteria questions on IBS and gastric dyspepsia were recommended to EES investigators by outside medical experts who are playing a key role in planning the Cooperative Studies Program genomics study and biorepository for Gulf War Veterans. As noted above, all questions pertaining to symptoms associated with Gulf War service, which were successfully used in the 2003-2005 survey, were retained in the newly developed questionnaire. These include 47 questions on symptoms (questions 14a. item 1-8, 14b. items 1-8), question 19, and question 22 items a.-p., and question 26 items a.-g. The Committee is correct that some changes were made in symptom-related questions between the 1995-1997 and 2003-2005 surveys (OMB numbers 2900-0558 and 2900-0637). These improvements in survey content were made by EES and VA experts because of changes in the scientific understanding of Gulf War Veteran illnesses during that time period.

5.  Fifth comment:

"Federal advisory panels and Congressional committees have called on VA to determine if Gulf War veterans have excess rates of neurological diseases such as multiple sclerosis and Parkinson’s disease, or increased rates of cancers and other diagnosed medical conditions. But 20 years after the Gulf War, we still know very little about the prevalence of diagnosed medical conditions in Gulf War veterans. It is extremely important that this survey obtain systematic data on physician-diagnosed medical conditions, as well as information on hospitalizations and surgeries since the Gulf War. Examples of the types of data required include information on specific \neurological diagnoses and difficult-to-diagnose neurological conditions, data on specific cancer types and noncancerous tumors, migraines, autoimmune conditions, chronic infectious diseases, respiratory conditions, dermatological conditions, gastrointestinal conditions, and cardiovascular conditions."

VA response: We agree with the Committee that additional studies of neurological outcomes are needed. EES researchers have a separate study, currently in the contract acquisition phase, which will examine neurological mortality in Gulf War Veterans in follow-up to an earlier report (Barth et al., 2010). The planned survey includes questions about an array of physician-diagnosed medical conditions, clinic or doctor visits during the past 12 months (including the reasons for visits or diagnosis), and hospitalizations during the past 12 months (including the reasons for hospitalizations or diagnosis). It is not practical to ask the respondents to report information about all "hospitalizations and surgeries since the Gulf War" since some respondents may have been hospitalized numerous times over the 20-year time period. However, self-reported information about hospitalizations will now be available from three time periods (1995-1997, 2003-2005, and 2011-2012); additional review of VA medical records databases is ongoing.

6.  Sixth comment:

"The survey currently includes an extensive number of questions related to psychological problems (e.g., depression, anxiety, PTSD, substance abuse). While problems of this nature are found in Gulf War veterans, they are less common than in other war veterans, and there is no reason they should constitute such a large proportion of the Gulf War survey instrument. Similarly, the current survey devotes nearly four pages to detailed questions on gastrointestinal function and symptoms, giving them much more emphasis than other problems of importance."

VA response: The planned questionnaire includes the 17-item PTSD Checklist (PCL-17) and the Patient Health Questionnaire (PHQ) to assess major depressive disorder and other mental disorders. The PHQ is a brief self-report assessment of common mental disorders developed specifically for primary care. PHQ allows brief provisional primary care diagnoses of certain disorders including major depressive disorder and probable alcohol abuse or dependence. The additional set of questions about anxiety or panic attacks can be omitted based upon the Committee’s recommendations.

In general, we have tried to cover both general medical conditions and selected psychological conditions that are common in the general population and Veteran populations (major depression, PTSD, and other anxiety disorders) (Kang et al., 2009; Toomey et al., 2007). In planning the study, we have not drawn a sharp distinction between psychological conditions such as PTSD and medical conditions that have a biological basis since there is substantial evidence from neurological and genetics research that PTSD and other common psychological disorders are likely to have genetic, biological, and environmental determinants. In order to examine symptom-based conditions such as fibromyalgia, chronic fatigue syndrome-like illness, and unexplained multi-symptom illnesses in large-scale epidemiologic studies, it can be useful from a scientific or statistical perspective to be able to control for potential confounding factors or effect modifiers (for example, major depression). The Institute of Medicine Committee on Gulf War and Health 2009 report on "Gulf War and Health: Volume 8: Update of Health Effects of Serving In the Gulf War" highlighted the need for follow-up studies of neurologic and psychiatric outcomes.

The questions that were included from the Rome criteria for IBS and functional dyspepsia include several skip patterns. With the use of web-based survey techniques and built-in skip patterns, respondents who do not report discomfort or pain in their abdomen or chest (unrelated to heart problems) will not see the majority of the questions on IBS and functional dyspepsia. Respondents completing paper versions of the survey will see these items, but will be directed to bypass them.

7.  Seventh comment:

"The survey does not include questions related to the health of veterans’ family members, although this remains a concern for Gulf War veterans. Important areas for which systematic data are needed include information on children’s health —both congenital abnormalities and problems that develop later in life (e.g. childhood cancers, developmental disorders of learning and attention), and information on birth outcomes and fertility."

VA response: We agree with the Committee that additional information is needed about the health of Gulf War Veteran's family members. However, as noted above, there is a limit to the number and scope of questions that can be included in a single survey. A series of detailed questions on pregnancy outcomes was included in the 1995-1997 questionnaire and those data have generated key findings published in the peer review literature. Additional data about the health of Gulf War Veteran's family members (such as childhood cancer and developmental disorders of learning and attention) should ideally be collected as part of a separate study.

8.  Eighth comment:

"Although the last section of the survey includes questions on veterans’ use of several complementary and alternative medical (CAM) therapies, there is no systematic information collected on veterans’ use of healthcare services at VA and elsewhere, or their use of more conventional treatments at VA and elsewhere. There have been some indicators that most veterans with Gulf War illness do not use VA healthcare services, but that some may use services more intensively than veterans of other eras. It is not known if veterans with Gulf War illness have benefited from care provided by VA and outside sources, or from any specific treatments. It is also not known what proportion of veterans with Gulf War illness and other medical conditions have applied for and received disability benefits. Current data in these areas would be extremely useful."

VA response: We agree with the Committee about the value of collecting additional data about health care services utilized by Gulf War Veterans at VA and non-VA facilities. As mentioned above, the Longitudinal Health Study of Persian Gulf War Era Veterans, which is an active IRB-approved protocol of this same panel of Veterans, includes linkages of survey data with VA medical records databases.

9. Ninth comment:

"Several sections of the survey should include an “other” category to allow veterans to provide information that would otherwise be lost when the respondent is limited by choices provided in the questionnaire."

VA response: We agree with this Committee recommendation and can easily insert and "other" category to capture more information.

10.  Tenth comment:

“With the planned expansion of the Gulf War brain bank/tissue repository, the survey presents an opportunity to provide information on tissue and organ donation to the large group of Gulf War-era veteran survey participants. A brief introduction to the program could be provided, along with contact information for those interested in learning more. "

VA response: We appreciate this suggestion. All materials mailed to the participants as part of the survey have to be reviewed and approved by the IRB. Including materials about the brain bank, tissue repository, or organ donation in the same package as the survey may impact survey participation or create misperceptions among the study participants. A follow-up mailing to participants to introduce other opportunities to participate would have the support of EES.

Cited References
Kang HK, Mahan CM, Kee KY, et al. Illnesses among United States Veterans of the Gulf War: a population-based survey of 30,000 veterans. JOEM 2000;42:491-501.
Kang HK, Li B, Mahan CM, et al. Health of US veterans of 1991 Gulf War: a follow-up Survey In 10 years. JOEM 2009;51:401-10.
Kang H, Magee C, Mahan C, et al. Pregnancy outcomes among U.S. Gulf War veterans: a population-based survey of 30,000 veterans. Ann Epidemiol 2001;11:504-11.
Barth SK, Kang HK, Bullman TA, Wallin MT. Neurological mortality among U.S. veterans of the Persian Gulf War: 13-year follow-up. Am J Ind Med 2009;52:663-70.
Toomey R, Kang HK, Karlinsky J, et al. Mental health of US Gulf War veterans 10 years after the war. Br J Psychiatry 2007;190:385-93.

AP: Gulf War Illness 20 Years Later

Thursday, February 24, 2011

EX-CIA ANALYST: "BUSH IGNORED OUR WARNINGS"

On Desert Storm Ground War's 20th Anniversary, Newly Published Intelligence Memoir Reveals Former President, Advisors Ignored Warnings Saddam Intended To Invade Kuwait

(Washington, DC) -- President George H. W. Bush and his senior advisors ignored a steadily growing stream of alarms from a key U. S. intelligence agency in the week before Saddam Hussein's invasion of Kuwait, a former CIA analyst charges in a new book.

"From July 20, 1990 onward, Bush and his key advisors were warned on a daily basis about the Iraqi military buildup on Kuwait's border," said former CIA analyst Patrick G. Eddington. "But instead of listening to his intelligence professionals, he ignored them."

Eddington makes this and other charges in his newly published book, Long Strange Journey: An Intelligence Memoir, an account of his nearly nine years at the CIA. Eddington's tenure at the Agency spanned the transition from the Cold War to the new era of American interventionism in the Persian Gulf and the Balkans. The book draws upon Eddington's direct experience reporting on the events described in the book, as well as thousands of pages of previously classified documents secured through litigation he pursued during the last decade with the help of Washington, D.C. attorney Mark S. Zaid (www.MarkZaid.com).

“Patrick Eddington has been on a dogged crusade for nearly 20 years to force the CIA and Pentagon to reveal the truth of what took place before, during and after the first Gulf War, especially on the still crucially important topic of chemical weapons. Few federal employees have ever been willing to sacrifice their career the way Eddington has in order to ensure the public is informed of its government’s secret knowledge,” said Mr. Zaid.

In the book, Eddington asserts that detailed satellite-imagery derived intelligence reports on the Iraqi military build up were transmitted daily from the National Photographic Interpretation Center (NPIC) to the White House, Pentagon, State Department and elsewhere in Washington, but that the warnings were disregarded in preference for the assurances from King Hussein of Jordan and President Hosni Mubarak of Egypt that Saddam was bluffing.

“Had our warnings been heeded, it’s possible action could have been taken in time to prevent the invasion, and the larger war that followed,” said Eddington.

Other revelations from Long Strange Journey:

That the CIA’s much-publicized failure to accurately characterize Iraq’s chemical warfare capabilities actually goes back decades and spans three wars.

That Saddam’s intent to invade Saudi Arabia was real and was only averted by President George H.W. Bush’s dispatch of American troops to the desert kingdom, contrary to what journalist Tim Weiner has claimed in his recent book, Legacy of Ashes.

How Saddam Hussein’s forces trained for the invasion of Kuwait, how that activity was missed or misinterpreted by the American intelligence community in the year before the attack, and how U.S. intelligence sharing with Iraq may have given Saddam the confidence that he could redeploy forces off his border with his arch enemy Iran and send additional Iraqi forces south to occupy Kuwait.

That the federal government deliberately attempted to suppress evidence of chemical exposures among Desert Storm veterans.

How the CIA’s post-Desert Storm tilt towards deepening its support to Pentagon operations compromised the Agency’s independence, and the role the CIA played in supporting Pentagon operations in Haiti and the Balkans in the 1990's.

Eddington's book has drawn praise from government watchdog groups and former Congressional investigators.

"This is a 'must read' for the Obama White House and concerned citizens, alike," said Burt Wides, who headed the Church Committee's investigations of the CIA and was Special Counsel to President Carter for oversight of all U.S. intelligence agencies.

"Partly an examination of Eddington's life as an analyst and partly a story of his difficulties in trying to convince officials to acknowledge the chemical-agent danger, Long Strange Journey is a valuable narrative about a talented young officer's experiences--and anguish--while serving in the middle ranks of America's premier secret agency," said Dr. Loch Johnson, Regents Professor at the University of Georgia and also a former Church Committee investigator.

"Long Strange Journey gives us a peek into the bowels of the intelligence community, and it isn't a pretty picture...Part spy thriller, part scandal, part love story, this book will make you hope there are more like him fighting for truth and justice behind the CIA's veil of secrecy," said Mike German, Senior Policy Counsel for National Security and Civil Liberties at the ACLU.

“Long Strange Journey is a gripping depiction of Eddington's struggle to force the CIA, Pentagon and Congress to acknowledge the Gulf War Syndrome's causes," said Danielle Brian,  Executive Director of the Project on Government Oversight. "It follows an idealistic young intelligence analyst's painful realization that the government institutions he loved would resort to hiding behind secrecy, intimidation, retaliation and deception rather than own up to its mistakes and take care of the veterans it had sent in harms way. It is a must-read for anyone who wants to know how the intelligence community really works.”

Concurrent with the release of the book, Eddington is also posting a number of partially declassified intelligence reports cited in the book on his blog, www.longstrangejourney.com. The book is available in paperback and electronic form from amazon.com.

Agenda for Meeting of the Research Advisory Committee on Gulf War Veterans’ Illnesses Released

Public Meetings of the Research Advisory Committee on Gulf War Veterans’ Illnesses, February 28 – March 1, 2011

=========

Monday, February 28, 2011

LOCATION:  U.S. Department of Veterans Affairs, 810 Vermont Avenue, Room 230, Washington, DC

Agenda

8:00 – 8:30 Informal gathering, coffee

8:30 Call to order Mr. Jim Binns, Chairman, RAC-GWVI

8:30 – 8:55 Veterans Service Organizations’ Remarks on the 20th Anniversary of the Gulf War – official representatives of the American Legion, VFW, DAV, VMW, and PVA  8:55-9:20 DOD/CDMRP Gulf War Illness Research -- Dr. Melissa Forsythe, COL, USA (Ret.) of the DOD Congressionally Directed Medical Research Program (CDMRP)

9:20-10:00 National Survey of GW veterans -- Dr. Aaron Schneiderman, VA Office of Environmental Agents

10:00-10:15 Break

10:15-11:45 VA Gulf War Research Program and panel discussion with key investigators with VA Gulf War Steering Committee participating --  Led by Dr. Joel Kupersmith, with  Dr. Timothy O’Leary, Dr. Dawn Provenzale, Dr. Christopher Brady, Dr. Maxine Krengel, staff of the VA Office of Research and Development, Dr. Aaron Schneiderman, and staff of the VA Office of Environmental Agents

11:45-12:15 Chief of Staff’s Remarks on the 20th Anniversary of the Gulf War -- Hon. John Gingrich, Chief of Staff, U.S. Department of Veterans Affairs

12:15-1:00 NIH Undiagnosed Disease Program --  Dr. John Gallin, Director, NIH Clinical Center, NIH Undiagnosed Diseases Program

1:00-2:00 Lunch

2:00-2:30 Gulf War Veterans’ Perspectives on the 20th Anniversary, by Members of the RAC-GWVI -- Rev. Joel Graves,  Mr. Anthony Hardie, COL Marguerite Knox

2:30-3:15 Washington WRIISC research update -- Dr. Mian Li, VA Washington, DC

3:15 Adjourn

===================

Tuesday, March 1, 2011

LOCATION:  U.S. Department of Veterans Affairs, Lafayette Building, 811 Vermont Ave. NW, Room 1143, Washington, DC   -- **NOTE CHANGE IN MEETING LOCATION FOR THIS DAY**

Agenda

8:00 – 8:30 Informal gathering, coffee

8:30-9:15 Palo Alto WRIISC research update -- Dr. Wesson Ashford, Palo Alto VAMC

9:15-10:00 Palo Alto WRIISC complementary and Alternative therapies for GW veterans  -- Louise Mahoney, Palo Alto VAMC

10:00-10:45 New Jersey WRIISC complementary And alternative therapies for GW veterans --  Dr. Anna Rusiewicz , Dr. Gudrun Lange, staff of the VA New Jersey Healthcare System

10:45-11:00 Break

11:00-11:45 Washington WRIISC complementary and Alternative therapies for GW veterans -- Dr. Jeanette Akhter, VA Washington, DC

11:45-12:30 Committee discussion led by Mr. Jim Binns, Chairman,with Dr. Kimberly Sullivan and the members of the RAC-GWVI  

12:30-1:00 New Research Update -- Dr. Kimberly Sullivan and the members of the RAC-GWVI

1:00-1:30 Public Comments

1:30pm Adjourn

Paul Sullivan: Response to VA on New Gulf War Data Report

 
February 23rd, 2011

Dear John,

I am truly disappointed in the sloppy report on Gulf War veterans.

VA has abandoned too many Gulf War veterans, a clear violation of your policy, taken from the Soldier’s Creed, to “never leave a fallen comrade.” That’s about a quarter million veterans left twisting in the wind under your failed leadership.

http://www.va.gov/vetdata/docs/SpecialReports/GW_Pre911_report.pdf

Here’s why.

First, VA didn’t bother to contact stakeholders to prepare, review, or announce the release of the report. So much for your propaganda about working with veterans: you mislead us. If it wasn’t for the Persian Gulf Veterans Act of 1998 that I and other veterans fought hard to pass, there would be no IOM and RAC reports to counter hundreds of millions of dollars in public relations garbage spewed out by VA and DoD starting in 1991 saying Gulf War veterans were not ill, or that any conditions were only psychological.

Second, I do see some material VCS requested was in the report (such as some costs). However, the report lacks totals (for example, for healthcare costs). There are no costs for some areas (disability compensation, education, etc.). There are made-up terms with no basis in law that are very confusing (what the heck is “Pre 9/11″). Some areas need more salient data (such as combined degree of disability just for the deployed population).

If a veteran, legislator, or reporter asked the question, “how many unique Gulf War veterans have ever sought VA healthcare or filed disability claims after deployment, and how much did it all cost?”, VA can’t answer. That means VA failed the most simple question. You seem to be living in a cave, wandering out only to toss out a press release or report, yet otherwise do nothing for the 250,000 who remain ill without treatment after 20 years.

Third, the report again whitewashes history. The U.S. took offensive action to invade Iraq and Kuwait only AFTER the U.S. gave the green light to Iraq’s Saddam Hussein that the U.S. wouldn’t get involved in a border dispute. How sad, that, 20 years later, VA has treated more than one million patients from the two-decade disaster. I see VA still holds to the “quick victory, low casualty” lie first started in March 1991. The U.S. shamefully stood by while Iraqi Republican Guard troops with tanks and helicopters killed innocent civilians who were encouraged to revolt by then President George H. W. Bush. Every time our government fails to admit these failures, including the failure to care for our veterans in a timely or honest manner, then the more likely the chance our government will repeat them. You are the leaders now and you have a responsibility to set the fact straight.

I regret to say that, without increased funding for research and treatment in the tens of millions of dollars per year, plus much more involvement of Gulf War veterans, the final verdict is that VA’s Gulf War Task Force was a complete failure (but VA did put out a few pretty press releases and reports).

The only time you, as Chief of Staff, ever spoke directly with Gulf War veteran leaders on policy matters, you failed to respond, as you promised. At the top of our list was depleted uranium research. As of today, VA has done nothing substantive in this area. That’s disgraceful.

While VA may be dramatically improving in some areas, especially billions of dollars in new funding advocated by VCS, Gulf War illness remains your greatest continuing significant failure. And there appears to be no relief in sight. VCS and other groups are left to use FOIA to obtain information VA refuses to otherwise release voluntarily. And even when we do submit FOIAs, VA refuses to respond.

VA’s new leaders have had two years to clean up the Gulf War illness mess you inherited; too bad VA only made it worse. Shame on VA.

Best, Paul.


Paul Sullivan
Executive Director
Veterans for Common Sense
http://www.VeteransForCommonSense.org
900 Second Street, NE
Suite 216
Washington, DC 20013
(202) 558-4553

“Please assist our veterans today.”

VA: The Gulf War Ground Assault: 20 Years Later

Written By John R. Gingrich February 23, 2011 at 12:01 pm

It’s hard to believe that 20 years have passed since the ground assault of Operation Desert Storm began on February 23, 1991. The air war had begun on January 17—as Brandon Friedman recalled in a recent entry—and now our time to begin operations had arrived. On that day, I was commanding a field artillery battalion in the 1st Infantry Division positioned along Saudi Arabia’s border with Iraq. As on the eve of every war and battle, there were a lot of unknowns, a lot of questions, and a lot of concerns as we prepared to carry out the mission assigned to us.

Although many of the specific memories and details of that day—and of subsequent days after we had advanced into Iraq and Kuwait—have faded, some memories have remained very clear. Among them are the character, the personalities, and the faces of the Soldiers it was my privilege to serve with and to lead.

Like American Soldiers of every generation, those with whom I served were a great and diverse mixture of young people—from every part of our great country and from every culture, ethnicity, and economic background. But their differences did not define them. What defined them, in my memory, was their willingness to serve, their dedication, and the way they put their hearts and souls into every assigned task—no different than the young men and women serving today, and over the past decade, in Iraq and Afghanistan.  All of them personify the four simple promises of the Soldier’s Creed:

• I will always place the mission first.
• I will never accept defeat.
• I will never quit.
• I will never leave a fallen comrade.

Two decades ago, I wasn’t thinking of the day I’d be a Veteran myself, or of the Department of Veterans Affairs. I never dreamed I’d get to help serve Veterans at VA. But when Secretary Shinseki provided the opportunity for me to come back into government service, I didn’t hesitate. And as he’s often said about serving at VA, it provides an opportunity to give back to the Soldiers with whom we served and those we went to war with—and that’s a rare privilege not extended to every former service member.

For many Veterans of the Gulf War, the intervening years have not been without trouble and trials. And some of the problems they’ve faced and the conditions they suffer are related to their honorable service.  Many studies have been made of Gulf War Syndrome, and it is still not possible to say, with certainty, exactly what causes the conditions associated with it. It’s important to continue searching for causes of these illnesses, but a primary mission at VA is to care for and treat the Veterans who suffer from them—period.

That’s why VA recently provided presumption of service connection for nine new diseases associated with service during Operation Desert Storm. That’s why the work of the Research Advisory Committee on Gulf War Veterans Illnesses and the Gulf War Advisory Commission, both established in 2008, are so important. That’s why we must re-double our efforts to care for Veterans, their families, and their caregivers—of every generation.

VA will complete its mission to care for Gulf War Vets. VA will not accept defeat. We will not quit, and we will not leave behind a Veteran who has fallen to a Gulf War illness.

20 years is a long time, and for me those years have flown by quickly. But the Soldiers with whom I was privileged to serve, part of the more than 22 million Veterans who have kept this country free and safe, remain foremost in my memory.  It is an honor to serve them, and to seek better care, services, and benefits for every generation of our Nation’s Veterans.

John R. Gingrich (pictured on the left) is the Chief of Staff for the Department of Veterans Affairs. He served in the U.S. Army for 30 years and commanded a Field Artillery battalion in the 1st Infantry Division during Operation Desert Storm.

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SOURCE:  VA, http://www.blogs.va.gov/VAntage/?p=1522#comment-2600

Saturday, February 19, 2011

LUNG CANCER ALLIANCE HAILS VETERANS ORGANIZATIONS’ CALL FOR PILOT CT SCREENING PROGRAMS

“We’ve known for years that our veterans are being diagnosed and dying of lung cancer at higher rates than civilians,” says Lung Cancer Alliance leader

Washington, DC -- Lung Cancer Alliance (LCA) hailed four key veterans organizations that on February 16, 2011 called for pilot CT screening programs for veterans at high risk for lung cancer and included the recommendation in the Independent Budget - an annual document listing their top priorities for federal funding.

LCA’s Chairman of the Board Admiral T. Joseph Lopez USN (Ret) called this “a responsible and timely action.”

The Independent Budget for Fiscal Year 2012, released yesterday by AMVETS, Disabled American Veterans (DAV), Paralyzed Veterans of America (PVA) and Veterans of Foreign Wars (VFW), included a section on the impact of lung cancer and urged that the VA set up pilot programs that would offer CT screening to veterans at high risk for lung cancer.

“We’ve known for years that our veterans are being diagnosed and dying of lung cancer at higher rates than civilians,” said Admiral Lopez.

“Now that the National Lung Screening Trial (NLST) has confirmed that CT screening can save tens of thousands of lives a year, I would urge the Veterans Administration to act expeditiously on the recommendation of our top veterans organizations to bring this benefit to the men and women who have served their country.” he said.

Lung cancer has a disproportionate impact on veterans, who have historically had higher smoking rates than civilians, and have been exposed during active duty to carcinogens, such as Agent Orange during the Vietnam War, asbestos on ships and submarines and depleted uranium in weapons and tanks during the Gulf War.

The leading cancer killer, lung cancer accounts for 30% of all cancer deaths, and takes more lives each year than the next four biggest cancers - breast, prostate, colon and pancreatic cancers - combined.

The long-standing debate over screening was resolved last November when the NLST, an eight year randomized controlled trial with 53,000 participants, demonstrated that CT scanners could find lung cancer at an early curable stage and reduce lung cancer deaths by at least 20% over chest x-rays.

By contrast, the overall mortality reduction of mammography screening on breast cancer is 15%.

Subsequent analyses of data collected in other NCI studies indicate that the mortality reduction of CT screening for lung cancer compared to no screening at all may be over 60%.

“The debate is over,” said Admiral Lopez. “CT screening does save lives.”  

Detecting and treating lung cancer at early stage is far less expensive than late stage, he pointed out, and added:  "Screening not only saves lives and money but enables those treated and cured to continue to lead productive lives."

"Pilot screening programs should be implemented immediately so this benefit is delivered to our veterans safely, effectively and efficiently.” Admiral Lopez concluded.

Research into CT screening for lung cancer was initiated in 1992 by the International Early Lung Cancer Action Program (I-ELCAP) which over the years has incorporated imaging advances as they occur and developed the most robust and accurate method for reading the scans and diagnosing lung cancer.

National and international researchers using the I-ELCAP protocol are seeing ten year survival rates of nearly 80%.

Lung cancer rarely shows definitive symptoms until the disease has progressed to a late, inoperable stage, and until now, screening has not been recommended, even for people at very high risk.

Consequently the five year survival rate for lung cancer is still only 15%.

Lung Cancer Alliance is the only national non-profit organization devoted solely to support and advocacy for all those living with or at risk for lung cancer. Lung Cancer Alliance is committed to leading the movement to reverse decades of stigma and neglect by empowering those with or at risk for the disease, elevating awareness and changing health policy.

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For more information on lung cancer screening please go to:

http://www.lungcanceralliance.org/eirc/screen/screening_positions.html

Friday, February 18, 2011

Ex-CIA analyst Patrick Eddington accuses agency of ‘sitting on’ Gulf War illness documents

Written by Jeff Stein, “Spy Talk”, Washington Post

(Washington Post) - A former CIA intelligence analyst says in a new book that the agency is “sitting on” 1.5 million documents that could shed new light on the mysterious maladies that have afflicted veterans of the 1991 Persian Gulf War.


“Twenty years after these veterans were exposed to Iraqi chemical agents and other toxins, they should not have to keep begging the government they fought to defend to make this information public,” the former analyst, Patrick G. Eddington, said in an interview Wednesday in advance of next week’s publication of his book, “Long Strange Journey: An Intelligence Memoir.”

Eddington, who quit the CIA in 1996 because he felt veterans were not getting the full truth about chemical contamination, contends that the agency has continued to resist full declassification of the documents because it “risks embarrassment and condemnation from Congress and veterans if the documents show evidence of additional exposure incidents that were not investigated or followed up."

CIA spokesman George Little rejected Eddington’s charge.

“It’s simply wrong to suggest that the CIA hasn’t publicly released documents on Gulf War illnesses,” he said in response to a query. “In fact, such material is readily available on our Web site.”

Soon after the end of the so-called "100-hour war" that ousted Saddam Hussein’s troops from Kuwait, U.S. troops and civilians began complaining of “fatigue, headache, joint pains, sleep disturbances and memory problems,” according to a list of symptoms compiled by the Veterans Administration.

Arguments have raged for years over the causes of “Gulf War Syndrome,” including whether it was caused by blundering U.S. attacks on Iraqi chemical weapons depots.

In 1998, the agency admitted to having more than a million previously undisclosed documents on the Gulf War, including chemical weapons incidents, in a CIA inspector general’s report on allegations by Eddington and his wife, also a CIA analyst, that agency bosses had retaliated against them for their criticism.

“The amount of the data the agency admitted sitting on in 1998 is what I found staggering,” said Eddington, now an aide to Rep. Rush Holt (D-NJ), who was chairman of the House intelligence committee’s oversight panel from 2007 through 2010.

Last year Holt inserted a provision into the fiscal year 2010 Intelligence Authorization Act mandating a CIA declassification review of its documents.

“Given how the CIA embarrassed itself 15 years ago on this issue, it’s not terribly shocking the agency would drag its feet on declassifying this material,” Eddington maintained, “but that doesn’t make it any less unconscionable.”

Despite CIA spokesman Little's denial of Eddington's charges, the former analyst is not backing down.

“Clearly, those 1.5 million documents are not on their Web site," he said. “They’re trying to peddle the nonsense that, since they’ve put a pitiful handful of documents on their Web site, Gulf War Syndrome-related intelligence is ‘readily available.’”

“Just as soon as they declassify in full those 1.5 million documents and post them to CIA.gov," he added, "I’ll be happy to acknowledge that—after nearly 15 years—they’ve taken a real step to come clean on what they know."

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Source:  Spy Talk, Washington Post:  http://voices.washingtonpost.com/spy-talk/2011/02/ex-cia_analyst_patrcik_eddingt.html

Promising Gulf War Illness Treatment Study Recruiting Participants in North Carolina

Respected GWI researcher to investigate two promising treatments for GWI with premier DoD-CDMRP funding

91outcomes Editor’s Note:

This Gulf War Illness treatment study is funded by the peer-reviewed, Congressionally Directed, U.S. Department of Defense Gulf War Illness Medical Research Program (CDMRP-GWI), the nation’s premier GWI research program.

Low Dose Naltrexone (LDN), one of the two drugs to be investigated for GWI in this study, has been found to have significant health benefits in patients with Multiple Sclerosis (MS) and several other chronic multi-symptom health conditions.  For more information on LDN, see:  www.lowdosenaltrexone.org.

The study’s Principal Investigator, Dr. William Meggs, is a respected scientist who has served on the Congressionally chartered U.S. Department of Veterans Affairs (VA) Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI) for many years. 

-Anthony Hardie

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GULF WAR ILLNESS STUDY

If you served in the 1991 Gulf War and developed symptoms of Gulf War related illness, you may be eligible to participate in a treatment protocol conducted by Dr. William J. Meggs at the Brody School of Medicine at East Carolina University, in Greenville, North Carolina and sponsored by the Department of Defense.

After a telephone screening interview, participants who qualify and wish to participate will be brought to the Brody School of Medicine at East Carolina University, in Greenville, North Carolina, to undergo an evaluation.

The study will test the benefits of two approved generic drugs, naltrexone and dextromethorphan, in treating the symptoms of Gulf War illnesses. These drugs will be studied because they are beneficial in illnesses similar to Gulf War illnesses, safe, readily available, and reduce inflammation in the brain that may be responsible for some of the symptoms that Gulf War Veterans are having.

If you feel that you may qualify for this study and are interested in participating, please contact Dr. William J. Meggs either by email [ meggsw@ecu.edu, copy to farmera@ecu.edu ], or telephone [252-744-2954].

Wednesday, February 16, 2011

CNN: Get Some Sleep: Fibromyalgia raises restless leg risk

By CNN HEALTH

Lisa Shives, M.D., is the founder of Northshore Sleep Medicine in Evanston, Illinois. She blogs on Tuesdays on The Chart. Read more from her at Dr. Lisa Shives’ Sleep Better Blog.

Kim is a 44-year old woman who came to sleep clinic to investigate her fitful and unrefreshing sleep.  She has also suffered from fibromyalgia, or FM,  for many years and has always assumed that her poor sleep was due to the fibromyalgia and that the best thing was to try to treat the FM.  She has been on the antidepressant Cymbalta for about one year and felt remarkable improvement in her FM symptoms.  However, she feels that her sleep is even worse. Upon further questioning, she did meet the clinical criteria for restless legs syndrome; she  answered yes to all four diagnostic questions.

I wasn’t surprised because a recent study published in the Journal of Clinical Sleep Medicine shows that adults with fibromyalgia have a much higher prevalence and risk of RLS than adults without the condition.

The study analyzed 172 people with a diagnosis of fibromyalgia. The mean age of participants was 50 years; 93 percent of the population was female. These patients were compared with 63 healthy subjects with a mean age of 41 years.

Fibromyalgia, a disorder that causes significant pain and fatigue, was identified by self-report or review of medical records and was confirmed by authors of the study. RLS, a sleep-related movement disorder, was diagnosed using a self-administered, validated questionnaire, which is the only way to diagnose this disorder.  RLS is what we call a “clinical diagnosis,” meaning that there is no test that confirms or excludes the diagnosis.

Results show that the prevalence of RLS was approximately 10 times higher in participants with fibromyalgia than in the group of control subjects. Participants suffering from both fibromyalgia and RLS reported an increased amount of sleep disruption, compared with their peers who suffered only from fibromyalgia.

The outcomes of the study indicate that a great deal of the sleep disruption that occurs in patients with fibromyalgia could be caused by RLS, but doctors have to think to evaluate this or patients have to explain very explicitly what they are feeling when they toss and turn and can’t go to sleep.  Although the cause of fibromyalgia is unknown, we know a little more about RLS (see my previous blog on RLS). We know that the antidepressants used to treat fibromyalgia may cause or exacerbate the RLS symptoms.

Many times though as we help the patients weigh the good and bad sides to this medication, they decide that the Cymbalta has such clear benefits that they elect to stay on it and add a medication for the RLS.  That is what Kim and decided to try for her after we did a sleep study that showed that she had significant periodic limb movement disorder, one  that is often seen in association with RLS but can be occur without RLS.  The RLS was preventing her from falling asleep; she typically tossed and turned and rubbed her legs for one to two hours. Then when she was asleep, the leg movements continually disturbed her sleep by causing arousals on average 30 times per hour.

Now that her RLS is well treated with a low -dose dopamine agonist (that is a synthetic analog of a naturally occurring neurotransmitter), she is a new woman.  Improvement in her sleep seemed to help lessen her FM pain even further so now she is able to exercise more which in turn seems to help her sleep better.

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SOURCE:  CNN Health, http://pagingdrgupta.blogs.cnn.com/2011/02/15/fibromyalgia-raises-restless-leg-risk/

Sunday, February 13, 2011

Gulf War Illness, other CDMRP Programs to Remain Fully Funded this Year under Congressional Funding Bill

House Continuing Resolution contains full funding for Gulf War Illness treatment research, funding for ALS, MS, Lung Cancer, and 21 other key military medical research priorities

Written by Anthony Hardie, 91outcomes.com

(91outcomes.com) – The continuing appropriations (CR) legislation expected to be considered in the U.S. House of Representatives this week contains full funding for the Congressionally Directed, treatment-focused Gulf War Illness Medical Research Program (CDMRP), a move that will be of great relief to the Gulf War veteran community. 

Since the failure of the omnibus appropriations bill at the end of the 112th Congress last December, the Gulf War Illness advocacy community has remained vigilant as current year funding was left as an unwritten promise by Congressional leaders.

As it was funded in the past few years, the Gulf War Illness peer-reviewed treatment-focused research program on which I have served since its initial funding in 2006 would be funded under the House bill at $8 million.  Our program vision statement directs that funded research must help to improve the health and lives of those suffering from Gulf War Illness. 

Led by Chairman Jim Binns, the Congressionally chartered Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI) on which I serve recommended, sought creation of, and has been instrumental in the funding for the CDMRP program for peer-reviewed Gulf War Illness treatment research.

The House CR would also provide an $8 million appropriation for ALS research funding, a substantial increase over last year.  ALS has been found in epidemic-level rates in veterans of the 1991 Gulf War and is a presumptive condition for service-connection for any U.S. veteran.

ALS, also known as Lou Gehrig’s disease, is a rapidly degenerative neurological condition that usually claims the lives of its victims in as short as 18 months after initial diagnosis.  Heavily engaged in advocacy efforts, the ALS Association’s mission is is to lead the fight to treat and cure ALS through global research and nationwide advocacy while also empowering people with Lou Gehrig’s Disease and their families to live fuller lives by providing them with compassionate care and support.

Multiple Sclerosis (MS) funding is also included in the House version of the CR, at $4.8 million.  MS is believed by Gulf War veterans to also be highly prevalent among veterans of the 1991 Gulf War.   The National MS Society, heavily involved in advocating for this funding, is a collective of passionate individuals who want to do something about MS now—to move together toward a world free of multiple sclerosis.

MS is a presumptive condition for VA service-connection if it’s diagnosed within seven years of discharge from active duty. 

Under the House version of the CR, peer-reviewed Lung Cancer research would be funded at $12.8 million.  The Lung Cancer Alliance, the only national non-profit organization dedicated solely to patient support and advocacy for people living with lung cancer and those at risk for the disease, has substantial concerns about lung cancer in Gulf War and other veterans.

Led by House Rules Committee Chairman David Drier, new to the current 113th Congress is a House Rules website that allows for relatively transparent and easy tracking of upcoming legislation and bills currently under consideration by the House.    Internet resources for tracking are posted below this article.

Twenty-one other CDMRP peer-reviewed military medical research programs would also be funded under House CR.   The full listing of the critically important CDMRP military medical research programs and their proposed funding levels under the House CR are as follows:

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

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MORE INFORMATION:

H.R. 1, Full Year Continuing Appropriations Act, 2011:  http://rules.house.gov/Legislation/legislationDetails.aspx?NewsID=100 

CR DoD Funding Tables:  See Page 54 of 55 --  http://www.rules.house.gov/Media/file/PDF_112_1/legislativetext/2011crapprops/FY%202011%20Department%20of%20Defense%20Base%20Funding.pdf

Amending the CR - A Basic Guide

 

The  U.S. House is scheduled to consider the continuing resolution during the week of February 14, 2011.

This will be the first general appropriations bill likely to be considered by the House under an open process in several years and perhaps the only continuing resolution ever considered that way.

In light of the length of time since the House last considered an appropriations bill under these circumstances, along with recent rule changes and some unique aspects of this legislative vehicle, this document is intended to assist

Members and their staff with questions that could arise as offices consider whether to draft amendments and in what form.

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MORE INFORMATION:

For the .PDF Guide, click here

Read More »

Saturday, February 12, 2011

Guest Editorial: Asbestos Exposure during the Gulf War

 

Written by Eric Stevenson, Special to 91outcomes 

Although the EPA formally began regulation of the use of asbestos in the 1970s, evidence of the military’s use of the substance continued even after it was banned for other commercial purposes. Furthermore, the use of military ships containing the dangerous mineral, including the Atlantic Freighter, continued even after the widespread knowledge of the negative consequences of exposure to this material. The Atlantic Freighter, a Vessel built by South Korea, was used by the United States Military Sealift Command in 1990 and also carried out supply missions during the Gulf War.

In 2007, the owner of the ship, the Crown Corporation, advised former and current crew members to get medical testing for the presence of mesothelioma symptoms, indicating that the material was not removed after its discovery in 1990. Another vessel that served in the Persian Gulf, the USS Worden, was laid down in 1961, which is well before asbestos use was regulated. This ship also served extensively in military operations throughout its 30-year history, carrying thousands of former soldiers during her service. In addition to this cruiser, the Gulf War also required the use of naval aircraft carriers for the frequent aerial bombing that took place, especially in the initial stages of the conflict. Like the Worden and Atlantic Freighter, these older vessels also might have contained dangerous asbestos materials.

Unfortunately for Gulf War veterans who might have served on these obsolete vessels, asbestos exposure was extremely high because of the likelihood the material were exposed. Naval vessels endure tremendous strain throughout their daily operations, both from the physical act of sailing and the exposure to the harsh ocean climate. While relatively safe if undamaged, asbestos on these ships stood a far greater chance of being both damaged and present in areas of the ship that could affect crewmen. In addition, because the hull of naval vessels remains relatively enclosed, receiving little air circulation, these men faced an increased risk of asbestos exposure, especially as the ships aged and the material escaped in greater quantities.

Unfortunately for those exposed to asbestos, mesothelioma symptoms remain latent for decades, frequently mimicking other lesser illnesses when they do appear. This late recognition leads to the delayed treatment of the cancer, which seriously hurts a patient’s prognosis. On average, patients typically only survive between eight and 14 months after initial diagnosis.

Unfortunately, the military does not provide support for veterans unless they can prove their asbestos exposure took place in the military alone. Historically, this has been difficult for former military members, many of whom later take manufacturing and construction jobs that involve frequent asbestos exposure. With 30% of those who contract mesothelioma having served in the military, all individuals who suspect exposure need to get tested in order to ensure a swift course of treatment is began if the presence of asbestos is identified in the veteran’s system. Although the phase out of asbestos use began more ten years before the start of the Gulf War, history has shown that those who served in the war are not free of the additional medical risk of asbestos, adding to the lasting legacy of a war that sent many military members home with serious illness.

Wednesday, February 9, 2011

Comments from 91outcomes Readers

In recognition of our Gulf War veterans, here’s comments sent to 91outcomes from two of them.

Anthony, 91outcomes.com 

============

Thank God for Murray.  I've been watching her for some time, and have been in the same room with her in D.C.\

She's got this Vet's vote...   It's about time we got ONE of 'em on our side.  Love it, and her.

Please pass this to her.
W.T., CWO3, USN, (ret) Vietnam Vet--in Country '66, recipient of combat action ribbon. 

Could use a word to the big VA people whoever they
are that I'd like my ischemia claim moving before I die, and leave a widow...

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“So much more than I could accomplish”

Mister Hardie,

   My name is J.A. and I also am a Desert Storm Veteran. I also was in Operation Just Cause when stationed with the 82 Airborne Division. As with many of our Veterans of the Gulf War I suffer from many ailments, but yet find myself in "The Battle after the War" with the Veterans Administration. My Appeal has been Rebutted from Washington to find itself back at Regional Office. Sometimes it is exhausting trying to fight the bureaucratic system that was established to help our Veterans, not to hinder them. I have met to many Veterans that just give up on the VA do to treatment, attitude and reluctant denial that they have experienced. A while back I started a Facebook Cause and Page called "Desert Storm Soldiers Exposed." I have helped many Veterans and I still will remain my drive, but you Sir have created something of what I could even fathom. As quickly I stumbled upon your site, I posted your link to my Cause.

   I would like to advise you of what I have gone through the last several years, but that would take to much of your honorable valued time. One year and about eighteen hours ago I became unemployable, to what was hard for me because I loved my job. Three months prior I was diagnosed with Multiple Sclerosis by a private Neurologist after several visits and tests in about three months. For over a year I have been on all the medications to treat for MS by the VA, but yet kept my on a "Probable" MS status. That was until I had submitted the Private Doctors notes to Release of Records and shown a copy to my VA Neurologist did they finally place it as my diagnosis. That is just one of many issues that I had dealt with, and still do. I'm hoping with the return of my file to Washington, I will finally obtain what is just.

   I would like to thank you for dedication, advocacy and of course your Military Service.

Godspeed, 
J.A., Port Richey, Florida

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DC Area Clinical Trial for Gulf War Veterans Now Recruiting Gulf War Veteran Paid Volunteers

 
Editor's note:  As of Feb. 1, 2012, recruitment is complete for this study.  No further study participants are being recruited.

***********

The purpose of this study is to determine if submaximal exercise by bicycle stress tests with pulmonary measurement of VO2MAX plus maximal isometric hand grips on 2 consecutive days causes a higher level of "exertional exhaustion" in GWI compared to healthy veterans (HVets)...
Date First Received: February 7, 2011
Last Updated: February 7, 2011
Verified by: Georgetown University, February 2011
Clinical Trial Phase: N/A | Start Date: July 2009
Overall Status: Recruiting
Estimated Enrollment: 80



Brief Summary
Condition Keyword(s):
Additional Keyword(s) Provided by Sponsor:
Condition MeSH Term(s), Assigned with an Experimental Algorithm:
The purpose of this study is to determine if submaximal exercise by bicycle stress tests with pulmonary measurement of VO2MAX plus maximal isometric hand grips on 2 consecutive days causes a higher level of "exertional exhaustion" in GWI compared to healthy veterans (HVets).
Study Type: Observational
Study Design: Observational Model: Cohort, Time Perspective: Cross-Sectional
Study Primary Completion Date: September 2012
Arms, Groups and Cohorts in this Clinical Trial
  • : GWI
    • Veterans of the 1990-1991 Persian Gulf War who have autonomic, neurological and other symptoms
  • : HC
    • Healthy veterans of the 1990-1991 Persian Gulf War
Criteria for Participation in this Clinical Trial
Inclusion Criteria:
  • Evidence of military enlistment between August 1, 1990 and July 31, 1991, and deployment for 30 consecutive days to:
  • Persian Gulf waters and adjacent land areas
  • Other global locations
  • U.S. only
  • Status prior to 1990 and 1991:
  • Active duty
  • National Guard
  • Reserves
Exclusion Criteria:
  • Current active duty military personnel
  • Any one who was not active duty military personnel between August 1, 1990 and July 31, 1991
  • HIV/AIDS; pregnancy or lactation; potential hepatitis; drug addiction; chronic inflammatory, infectious, or autoimmune medical illnesses not associated with GWI;
  • incarceration; dementia, other cognitive limitation; or reliance on a care-giver in order to respond to the questionnaires and other study tests.
  • Amputations of one or both hands and forearms will be permitted but hand grip tests will not be tested
Gender Eligibility for this Clinical Trial: Both
Minimum Age for this Clinical Trial: 38 Years
Maximum Age for this Clinical Trial: 86 Years
Are Healthy Volunteers Accepted for this Clinical Trial?: Accepts Healthy Volunteers
Clinical Trial Sponsor Information
Lead Sponsor: Georgetown University Other
Overall Clinical Trial Officials and Contacts
James N Baraniuk, MD Principal Investigator Georgetown University  
Overall Contact: Yin Zheng, MS 202-687-8231 gwiresearch@georgetown.edu
Related Publications
References
Gray GC, Reed RJ, Kaiser KS, Smith TC, Gastañaga VM. Self-reported symptoms and medical conditions among 11,868 Gulf War-era veterans: the Seabee Health Study. Am J Epidemiol. 2002 Jun 1;155(11):1033-44. Erratum in: Am J Epidemiol. 2005 Feb 1;161(3):302.
Baraniuk JN, Casado B, Maibach H, Clauw DJ, Pannell LK, Hess S S. A Chronic Fatigue Syndrome - related proteome in human cerebrospinal fluid. BMC Neurol. 2005 Dec 1;5:22.
Janssen B, Hohenadel D, Brinkkoetter P, Peters V, Rind N, Fischer C, Rychlik I, Cerna M, Romzova M, de Heer E, Baelde H, Bakker SJ, Zirie M, Rondeau E, Mathieson P, Saleem MA, Meyer J, Köppel H, Sauerhoefer S, Bartram CR, Nawroth P, Hammes HP, Yard BA, Zschocke J, van der Woude FJ. Carnosine as a protective factor in diabetic nephropathy: association with a leucine repeat of the carnosinase gene CNDP1. Diabetes. 2005 Aug;54(8):2320-7.
Casado B, Zanone C, Annovazzi L, Iadarola P, Whalen G, Baraniuk JN. Urinary electrophoretic profiles from chronic fatigue syndrome and chronic fatigue syndrome/fibromyalgia patients: a pilot study for achieving their normalization. J Chromatogr B Analyt Technol Biomed Life Sci. 2005 Jan 5;814(1):43-51.
Fukuda K, Nisenbaum R, Stewart G, Thompson WW, Robin L, Washko RM, Noah DL, Barrett DH, Randall B, Herwaldt BL, Mawle AC, Reeves WC. Chronic multisymptom illness affecting Air Force veterans of the Gulf War. JAMA. 1998 Sep 16;280(11):981-8.
Additional Information
Information obtained from ClinicalTrials.gov on February 07, 2011
Link to the current ClinicalTrials.gov record. http://clinicaltrials.gov/show/NCT01291758
Study ID Number: 2009-229
ClinicalTrials.gov Identifier: NCT01291758
Health Authority: United States: Institutional Review Board
Laboratory Website

Clinical Trials Authorship and Review
Clinical Trials content is provided directly by the U.S. National Institutes of Health via ClinicalTrials.gov and is not reviewed separately by ClinicalTrialsFeeds.org. Every page of specific clinical trials information contains a unique identifier which can be used to find further details directly from the National Institutes of Health.

Monday, February 7, 2011

USA TODAY: Exposure to Gulf War pesticide in womb linked to children’s learning disabilities

Babies exposed to high levels of pesticides while in the womb may suffer from learning problems, a new study suggests.

Written by Liz Szabo, USA TODAY

  • Children exposed to the highest pesticide levels in utero were three times as likely to have a mental delay compared to children with lower levels.(USA Today) - Children exposed to the highest pesticide levels in utero were three times as likely to have a mental delay compared to children with lower levels.

The study focused on a chemical called permethrin, one of the pyrethroid pesticides, commonly used in agriculture and to kill termites, fleas and household bugs, says lead author Megan Horton of the Columbia Center for Children's Environmental Health. Most of the pregnant women in this New York-based study were exposed by spraying for cockroaches.

Permethrin — among the most commonly detected pesticides in homes — is being used more often today as older organophosphorous pesticides are phased out because of concerns that they harm brain development, says Horton, whose study is being published today in Pediatrics.

Researchers measured 348 pregnant women's exposures by asking them to wear backpack air monitors, Horton says. Researchers followed the women and their children for three years.

Children exposed to the highest pesticide levels before birth were three times as likely to have a mental delay compared to children with lower levels, the study says. Children with the highest prenatal exposures also scored about 4 points lower on an intelligence test, the Bayley Mental Developmental Index. That test has a mean score of 100, with most people's scores falling within 15 points of that range.

That's about the same intelligence loss caused by lead, says Philip Landrigan, a pediatrics professor and environmental health expert at New York's Mount Sinai School of Medicine.

Pyrethroid pesticides kill bugs by "being toxic to the developing brain," Landrigan says. The results are "very believable and should be taken seriously," Landrigan says.

Because the study is the first to link permethrin with brain damage, researchers need to conduct additional studies before concluding that the pesticide really harms the brain, says Mary Fox, an assistant professor at John Hopkins' Bloomberg School of Public Health.

Even without definitive data, however, Fox says it makes sense for pregnant women to reduce their exposure to bug sprays and other pesticides.

To control bugs, for example, she suggests fixing water leaks, keeping food tightly covered and, if necessary, spraying outside instead of inside the home.

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91outcomes Editor’s Note: 

Toxic exposures to military strength Permethrin -- the pesticide cited in this new study -- are among the many toxic exposures linked by scientific researchers to Gulf War veterans’ illnesses, including Gulf War Syndrome.

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Article Source:  USA Today, http://yourlife.usatoday.com/parenting-family/babies/story/2011/02/Exposure-to-pesticides-in-womb-linked-to-learning-disabilities/43401024/1?csp=34news&utm_source=feedburner&utm_medium=feed&utm_campaign=Feed%3A+usatoday-NewsTopStories+%28News+-+Top+Stories%29&utm_content=My+Yahoo

Health.com: Men Get Fibromyalgia Too

Written by Sarah Klein, Health.com

91outcomes Editor’s note:  **Fibromyalgia is a presumptive condition for VA disability service-connection for Gulf War veterans.*  See your veterans service officer to file a claim.

Men Get Fibromyalgia Too

 

Mark Maginn had excruciating pain all over his back, hips, and neck for 15 years before a doctor finally gave his problem a name—fibromyalgia. "I was fully prepared to live my life in excruciating pain," says Maginn, 61, a former psychotherapist living in San Francisco. "I was relieved that there was a diagnosis, but it's more than a little disconcerting [when] you realize you've got this thing that's going to be with you forever."

Fibromyalgia can take years to diagnose—three to five years on average—but Maginn's situation may have been complicated by that fact that he's a man. Fibromyalgia is diagnosed in 2% to 4% of the population but is about nine times more common in women than men.

The lower numbers mean that doctors are less likely to consider the diagnosis in the first place, and, what's more, fibromyalgia may look slightly different in men than women. The condition may be milder in men, who may also have fewer symptoms. Some research has suggested that men tend to have less frequent flare-ups of their symptoms, which also are likely to last for shorter periods of time.

However, one Israeli study found that men with fibromyalgia actually had more severe symptoms, decreased physical function, and lower quality of life than women the same age with fibromyalgia.

Maginn, a volunteer advocate for the American Pain Foundation, has been able to tame about 60% to 70% of his symptoms with the help of the drug Lyrica, although he says he still has "days when [that pain] is so lousy that even the drug doesn't have any effect on it."

Part of the reason men are less likely to be diagnosed may be due to deeply ingrained social norms that teach men to hide their feelings, making them less likely to seek help for something that could be viewed as a weakness, like body pain.

"Doctors need to question their male patients about pain to get their patients to talk, [because we] are sometimes reluctant to talk about it," says Maginn.

Unfortunately, fibromyalgia still has a serious credibility problem. Even if men are willing to talk, not all doctors believe what they are hearing. "When people can't see what the trouble is, they have a tendency not to believe in the trouble," says Maginn. "Pain is invisible."

Doctors both before and after Maginn's diagnosis doubted his fibromyalgia was real, he says. "I had one doctor suggest that I see a psychotherapist or psychiatrist because the pain was probably all in my head. That infuriated me."

He's certainly not alone. In a 2007 survey, more than 25% of the 2,000 fibromyalgia patients questioned reported that their doctors did not view fibromyalgia as a "very legitimate" disorder. For Maginn, this process grew frustrating, as he continued to meet with doctors who didn't believe him enough to look for answers. "It didn't prevent me from seeking out help, but it made the search for help more fraught with difficulty," he says. "If I had been somebody [else], I could see where I would have just given up trying to work with doctors."

Maginn says he wasn't reluctant to talk to his doctor about his symptoms, but isn't immune to all the stigma surrounding fibromyalgia in men. He is not able to stand for long periods of time and was forced to leave work on disability, which made him vulnerable.

"I'm sensitive to not being the breadwinner, a traditional male role," he says. "Since I'm not and my wife is, I'm sensitive to people looking at me and wondering what's wrong because they can't see anything."

Fortunately for patients, the U.S. Food and Drug Administration's approval of three drugs—Cymbalta, Lyrica, and Savella—for fibromyalgia has helped to bring the condition out of the closet, says Patrick Wood, MD, a member of the medical advisory board of the National Fibromyalgia Association. "With the release of recent medications, there's been a greater orientation to the reality of this disorder and emphasis to make it something that's treated as a legitimate condition."

But in addition to disbelief and social norms, there are also some physical variations that make fibromyalgia different in men. The current guidelines for diagnosing fibromyalgia include feeling pain at 11 or more of 18 common tender points. But because the average woman is more sensitive to pain than the average man, women score higher on this diagnostic test and, therefore, meet the criteria for fibromyalgia more frequently than men, explains Daniel Clauw, MD, the director of the Chronic Pain and Fatigue Research Center at the University of Michigan, in Ann Arbor. 

[91outcomes.com Editor’s note:  Dr. Clauw formerly served on the Congressionally chartered Research Advisory Committee on Gulf War Veterans’ Illnesses (RAC-GWVI).]

Dr. Clauw supports the burgeoning movement to eliminate the tender points test from fibromyalgia diagnoses because of this bias toward women. "Using [tender points] criteria, fibromyalgia is about 95% female," he says. "That will probably go down to about 65% because chronic, widespread pain is only about 1.5 times greater in women than in men."

Another deviation may be chemical imbalances in the brain. Dr. Wood suggests hormones may play a role. "With the dopamine system, in particular, there are gender differences as to how the brain responds to situations," he says, pointing particularly to stress. "Estrogen is very excitatory to the central nervous system, [while] progesterone is very calming." Greater attention to hormonal imbalances may lead to gender-specific treatment in the future, he adds.

Dr. Clauw is not convinced that estrogen is the culprit. "Pregnancy and menopause [cause great changes in estrogen] and neither of those are associated with changes in pain in women," he says. "We simply don't know why women have more pain than men." Until the condition is more deeply understood, managing the pain is any patient's best plan of attack.

Part of that plan may be turning to fellow patients. Support groups can be helpful, although Maginn says being the only man led to an unsatisfying experience. Looking for a better option, he and his wife scoured stores for self-help books but found little. To fill the void, he's busy writing the first draft of a memoir about his experiences with fibromyalgia and other illnesses; he hopes it will help men like him.

(Today, greater options exist for men, particularly online. There's the Yahoo-based FibroMenSupportGroup with nearly 400 members, and plenty of sites offer information and chat forums, like MenWithFibro.com.)

Despite the gender imbalance, advice for thriving with fibromyalgia is gender neutral. Both men and women can benefit from scaling back on activities, allowing themselves to do less, attending support group meetings, and taking medications or adopting lifestyle changes that ease the pain.

"Men—and women—deserve to have their pain treated," says Maginn. "There is hope for us."

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Source:  Health.com, http://health.msn.com/health-topics/articlepage.aspx?cp-documentid=100269589