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1 Introduction The purpose of this report is to evaluate and recommend treatments for the array of medically unexplained symptoms—termed chronic multi­ symptom illness (CMI)—experienced by veterans of the Gulf War. CMI is sometimes referred to as Gulf War syndrome or Gulf War illness. The definition of CMI used in this report is included in Chapter 2. Throughout modern history, many soldiers returning from combat have experienced postcombat illnesses (Hyams et al., 1996; Jones, 2006; Jones and Wessely, 2005). Efforts to define the illnesses have resulted in descriptive names, such as irritable heart, Da Costa’s syndrome, shell shock, combat fatigue, and posttraumatic stress disorder (PTSD). Many soldiers who have postcombat illnesses have long-term unexplained symptoms that cannot now be attributed to any diagnosable pathophysiologic etiology or disease; such symptoms are referred to as medically unexplained. CMI dif- fers from such postcombat illnesses as PTSD that have a defined complex of symptoms (Jones, 2006; Mahoney, 2001; Zavestoski et al., 2004). Soldiers who have CMI often have nonspecific physical symptoms (such as fatigue, joint and muscle pain, and gastrointestinal symptoms) and cognitive symp- toms (such as reduced processing speed and memory difficulties) in addition to symptoms that are commonly associated with depression and anxiety. PRIOR EFFORTS TO ADDRESS CHRONIC MULTISYMPTOM ILLNESS IN GULF WAR VETERANS In efforts to understand CMI and how to treat for it, substantial resources have been devoted to determining its underlying cause. Govern- 11

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12 GULF WAR AND HEALTH ment agencies in the United States and elsewhere have pursued or funded ambitious research programs to study CMI (Mahoney, 2001; Zavestoski et al., 2004). Most research on the cause of CMI has focused on environmen- tal toxicants to which military personnel may have been exposed. Those toxicants include a long list of chemical, biologic, and physical agents (Persian Gulf War Veterans Act of 1998, Public Law 277, 105th Cong., October 8, 1998; Veterans Programs Enhancement Act of 1998, Public Law 368, 105th Cong., October 21, 1998). The focus on toxicants may be attributed, at least in part, to “a general fear of toxins spread as a result of modern industrial life” (Jones and Wessely, 2005). Many agents used in combat operation may be harmful to humans, depending on exposure routes and quantities. Concern about health effects of exposure to toxicants during war became ingrained in our culture with the Vietnam War, when a herbicide, Agent Orange, was implicated as a source of serious health problems in veterans and others who were exposed. The present committee is not the first Institute of Medicine (IOM) com- mittee to evaluate treatments for CMI in Gulf War veterans. In 2001, IOM released a report, Gulf War Veterans: Treating Symptoms and Syndromes, which examined how to manage medically unexplained physical symptoms (MUPS; termed CMI in this report) (IOM, 2001). The committee that wrote that report found sparse evidence on treatments for MUPS and so was unable to recommend specific treatments. It did, however, recommend a general approach for the management of patients who had MUPS. That approach included • Using diagnostic testing and medication only as medically necessary. • Using appropriate reassurance strategies to comfort patients. • Setting realistic goals in collaboration with patients. • Encouraging patients to exercise regularly to improve functioning. • Encouraging patients to involve their families and friends, if appro- priate, in their care. • Coordinating care among clinicians so that patients do not bounce from specialist to specialist, receive many unnecessary diagnostic procedures, and end up on multiple unnecessary medications. • Introducing specialty mental health consultation, if needed. (“Most patients with MUPS do not require psychiatric treatment or psy- chological testing.”) (IOM, 2001). In 2006 and again in 2010, IOM committees reviewed and evaluated the scientific literature on the health status of 1991 Gulf War veterans. Both committees found that veterans of the 1991 Gulf War who had been deployed reported more symptoms than their nondeployed counterparts (IOM, 2006b, 2010a). The later report concluded that there is “suffi-

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INTRODUCTION 13 cient evidence of association between deployment to the Gulf War and chronic multisymptom illness” (p. 210), that “the excess of unexplained medical symptoms reported by deployed Gulf War veterans cannot be reli- ably ascribed to any known psychiatric disorder” (p. 109), and that the u ­ nexplained symptoms might “result from interplay between . . . biological and psychological factors” (p. 260). A number of IOM reports have examined associations between health outcomes and exposures that military personnel may have been subject to during their service in the 1991 Gulf War—chemical exposures (for exam- ple, to combustion products, pesticides, pyridostigmine bromide, sarin, and solvents), biologic exposures (for example, to infectious agents and vaccines), and physical exposures (for example, to depleted uranium) (IOM, 2000, 2003, 2004, 2005, 2006a,b, 2007, 2008, 2010a). In sum, those reports did not find evidence that would support a confident attribution of the array of unexplained symptoms reported by veterans of the 1991 Gulf War to any specific chemical, biologic, or physical exposure. There is a lack of consensus among expert groups regarding the cause of CMI in 1991 Gulf War veterans. Most experts who have studied the issue have not identified what they consider to be a likely cause of CMI. However, the Department of Veterans Affairs (VA) Research Advisory Committee on Gulf War Veterans’ Illness (RAC) conducted a review of the evidence and concluded that Gulf War illness was causally associated with use of pyridostigmine bromide pills and exposure to pesticides used during deployment (RAC, 2008). IOM reviewed the epidemiologic and experi­ mental studies cited in the RAC report and concluded that the evidence was not robust enough to establish a causal relationship between pyridostigmine bromide or pesticides and CMI (IOM, 2010a). Despite many years of research, there is no consensus among physi- cians, researchers, and others as to the cause of CMI in 1991 Gulf War veterans, and there is a growing belief that a causal factor or agent may not be identified (IOM, 2010a; Mahoney, 2001). It is also possible that an underlying physiologic abnormality may not be identified. The 2010 IOM committee recommended “a renewed research effort with substantial com- mitment to well-organized efforts to better identify and treat multisymptom illness in Gulf War veterans” (IOM, 2010a). THE CHARGE TO THE COMMITTEE The present study was mandated by Congress in the Veterans Benefits Act of 2010 (Public Law 111-275, October 13, 2010). The law directs the secretary of veterans affairs “to enter into an agreement with the Institute of Medicine of the National Academies to carry out a comprehensive review of the best treatments for CMI in Persian Gulf War veterans and an evaluation

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14 GULF WAR AND HEALTH of how such treatment approaches could best be disseminated throughout the Department of Veterans Affairs to improve the care and benefits pro- vided to veterans.” In August 2011, VA asked that IOM conduct a study to address that charge, and IOM appointed the Committee on Gulf War and Health: Treatment for Chronic Multisymptom Illness. The complete charge to the committee is in Box 1-1. A description of how the committee approached its charge can be found in Chapter 3 and its evaluation of the evidence, conclusions, and recommendations are presented in Chapters 4–8. BOX 1-1 The Committee’s Charge The Institute of Medicine (IOM) will convene a committee to compre- hensively review, evaluate, and summarize the available scientific and medical literature regarding the best treatments for chronic multisymptom illness among Gulf War veterans. In its evaluation, the committee will look broadly for relevant informa- tion. Information sources to pursue could include, but are not limited to • Published peer-reviewed literature concerning the treatment of multisymptom illness among the 1991 Gulf War veteran population; • Published peer-reviewed literature concerning treatment of mul- tisymptom illness among Operation Enduring Freedom, Opera- tion Iraqi Freedom, and Operation New Dawn active-duty service members and veterans; • Published peer-reviewed literature concerning treatment of multi- symptom illness among similar populations such as allied military personnel; and • Published peer-reviewed literature concerning treatment of popula- tions with a similar constellation of symptoms. In addition to summarizing the available scientific and medical lit- erature regarding the best treatments for chronic multisymptom illness among Gulf War veterans, the IOM will • Recommend how best to disseminate this information throughout the Department of Veterans Affairs to improve the care and ben- efits provided to veterans. • Recommend additional scientific studies and research initiatives to resolve areas of continuing scientific uncertainty. • Recommend such legislative or administrative action as the IOM deems appropriate in light of the results of its review.

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INTRODUCTION 15 THE GULF WAR VETERAN POPULATION Veterans are considered to have served in the Gulf War if they were on active military duty in the Southwest Asia theater of military opera- tions during the period from the 1991 Gulf War (Operation Desert Storm) through the Iraq War (Operation Iraqi Freedom and Operation New Dawn) (VA, 2012b). The Gulf War officially began on August 2, 1990, when Iraqi troops invaded Kuwait. US and coalition troops arrived in the theater in January 1991, and combat was over on February 28, 1991. A cease-fire with Iraq was signed in April 1991, and the last US troops participating in the ground war arrived back in the United States in June of that year. Dur- ing the 1990s, US troops participated in a variety of military activities in the Southwest Asia theater of operation. The United States has not formally declared an end to the Gulf War, and the Iraq War is considered part of the same military mission (VA, 2011). For the purpose of this report, although Afghanistan is not in the Southwest Asia theater of operation, veterans of the Afghanistan War (Operation Enduring Freedom) are included in the Gulf War veteran population. A substantial number of soldiers have served in both the Iraq and Afghanistan theaters of operation. Three populations of Gulf War veterans are referred to in this report: 1991 Gulf War veterans, Iraq War veterans, and Afghanistan War veterans. About 700,000 military personnel participated in the 1991 Gulf War (VA, 2012a). Estimates of the numbers of 1991 Gulf War veterans who have CMI range from 175,000 to 250,000 (about 25–35% of the 1991 Gulf War veteran population) (IOM, 2010a; RAC, 2008). As noted above and discussed in more detail in later chapters, 1991 Gulf War veterans who have CMI experience a large constellation of symptoms. A number of research studies have been conducted to determine whether those symptoms can be grouped into symptom clusters (see the 2010 IOM report for a sum- mary of the studies), but the research has identified no symptom clusters, or syndromes. There is evidence that CMI in 1991 Gulf War veterans may not resolve over time. Many of the symptoms reported by veterans of that war are chronic. Ill veterans in general (not only those who have CMI) who were deployed to the gulf in 1991 are more likely than nondeployed veterans who served during the same era to report persistent health problems and to develop new ones (Li et al., 2011). Health outcomes assessed by Li et al. (2011) include chronic fatigue syndrome–like illness, functional impair- ment, limitation of activities, clinic visits and hospitalizations, and self- perception of health. As discussed above, Gulf War veterans include military personnel who served in the Iraq war and, for the purpose of this report, the Afghanistan war, in addition to those who served in the 1991 war. As of September

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16 GULF WAR AND HEALTH 2011, 2.6 million military personnel have been deployed to Iraq or Afghani- stan (GAO, 2011). Deployments to the Iraq and Afghanistan war theaters differ somewhat from deployments to the 1991 Gulf War. Women make up about 11% of US military personnel who have served in Iraq and Afghanistan compared with about 7% in the 1991 Gulf War (IOM, 2010a,b). Nearly one-fourth of military personnel who have served in Iraq and Afghanistan have been from the National Guard and reserves compared with about 17% in the 1991 Gulf War (IOM, 2010a,b). National Guard and reserve personnel are substantially older than active-duty personnel; for example, 73.6% of reserve officers are over 35 years old compared with 44.2% of active-duty officers (IOM, 2010b). Military personnel in the Iraq and Afghanistan wars have been exposed to more hostile fire, including blasts from improvised explosive devices. Their deployments are longer than those in the 1991 Gulf War, and repeated deployments are common. Personnel who have at least one prior deployment are more likely to screen positive for PTSD and major depression and to report chronic pain than those who have no prior deployments (Kline et al., 2010). Three health conditions often are associated with service in the Iraq and Afghanistan wars: PTSD, traumatic brain injury (TBI), and chronic pain. Lew et al. (2009) reviewed medical records of 340 Iraq and Afghanistan war veterans at a VA polytrauma center and found that the prevalence of PTSD was 68.2%, of persistent postconcussive symptoms from TBI 66.8%, and of chronic pain 81.5%. A substantial number of those veterans—42.1%— ­ had all three conditions. Other studies have also reported high rates of that triad of conditions (Reisinger et al., 2012; Walker et al., 2010). Symptoms reported by Iraq and Afghanistan war veterans include headaches, chronic pain (particularly lower back and joint pain), sleep disturbances, fatigue, irritability, and concentration, attention, and memory problems (Walker et al., 2010). Many symptoms experienced by Iraq and Afghanistan war vet- erans overlap with those experienced by 1991 Gulf War veterans. GULF WAR VETERANS’ EXPERIENCES WITH DIAGNOSIS OF AND TREATMENT FOR CHRONIC MULTISYMPTOM ILLNESS During the 1991 Gulf War and on returning to the United States after deployment, ill veterans have sought help for the diagnosis of and treatment for their CMI. Many were seen initially by clinicians at VA facilities but became frustrated because VA clinicians diagnosed psychologic conditions (for example, depression, anxiety disorders, stress-related complaints, and somatoform disorders) (Shriver and Waskul, 2006; Swoboda, 2006). Often, they received no diagnosis at all (Zavestoski et al., 2004) or received many diagnoses and were confused by what they “officially” had (Furey, 2012).

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INTRODUCTION 17 In some cases, the veterans sought answers to their health problems from private clinicians, often at great personal financial expense. Losing trust in medical professionals, veterans have also searched for information about their symptoms and potential diagnoses and treatments through the Internet, medical books and articles, newspapers, their peers, and other sources (Swoboda, 2006). An analysis of veterans’ Internet use related to CMI suggests that their primary means of Internet communica- tion is discussion boards, although blogs (including microblogs), Facebook, and media-sharing are also used (Furey, 2012). Their searches sometimes have led them to alternative medical treatments, such as unconventional diets, detoxification, vitamins, physical and manipulative therapies, reli- gious and metaphysical practices, and “New Age” and self-improvement philosophies (Furey, 2012; Swoboda, 2006). Because those who are ill do not have a disease with a distinct etiology, veterans of the 1991 Gulf War believe that the legitimacy of their illness is often called into question by clinicians, family members, friends, and others (Shriver and Waskul, 2006). The stress caused by the necessity to prove repeatedly that they are ill can add to the veterans’ health problems by creating anxiety, which in turn may exacerbate the veterans’ symptoms (Zavestoski et al., 2004). Some ill 1991 Gulf War veterans, believing that they are being given wrong diagnoses and are being inadequately treated by clinicians, view themselves as “victims of an entrenched medical discourse that makes it difficult for many practitioners to recognize new patterns of illness” (­ woboda, 2006, p. 247). They are left feeling distrustful of and betrayed S by the health care system (Furey, 2012). Therefore, it is not surprising that a different approach to managing veterans who have CMI has been pro- posed (Mahoney, 2001; Zavestoski et al., 2004). Mahoney (2001) stated that clinicians should approach CMI with “a person-centered rather than a disease-centered model of care that allows patients more control over their diagnoses and treatment plans, that helps patients understand that the word psychosomatic is not pejorative, and that concentrates less on finding the origin of disease than on treating its symptoms” (p. 581). ORGANIZATION OF THIS REPORT The committee’s work is presented in seven additional chapters. Chap- ter 2 explains the terminology surrounding CMI and how the term is used by the committee. It also covers what is known about CMI (for example, the understanding of its course) and why the committee believes that it is appropriate to evaluate the literature on CMI in populations other than Gulf War veterans as part of its analysis. Chapter 3 describes how the committee approached its charge, including its strategy for assessing treat-

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18 GULF WAR AND HEALTH ments for CMI. Chapter 4 summarizes the evidence on treatments for CMI and the committee’s evaluation of it. Chapter 5 discusses evidence-based treatment practices for conditions that either have overlapping symptoms with CMI or present comorbidly with CMI (for example, chronic fatigue syndrome, fibromyalgia, irritable bowel syndrome, depression, and anxi- ety). Chapter 6 describes how the way in which clinicians engage with their patients can affect the course of CMI. Chapter 7 provides information on VA’s current model of care for veterans who have CMI and describes alternative models of care and how they may be implemented by VA health care system. Finally, Chapter 8 presents the committee’s recommendations. Brief biographies of the committee members are in Appendix A, a discus- sion of possible factors underlying the symptoms of CMI in Appendix B, and examples of ineffective and effective clinician–patient discussions in Appendix C. REFERENCES Furey, P. 2012 (unpublished). Analysis of the Social Media Discussion of Chronic Multi- symptom Illness in Veterans of the Iraq and Afghanistan Wars. Analysis commissioned by the Committee on Gulf War and Health: Treatment of Chronic Multisymptom Illness, Institute of Medicine, Washington, DC. GAO (Government Accountability Office). 2011. VA Mental Health: Number of Veterans Receiving Care, Barriers Faced, and Efforts to Increase Access. Washington, DC: GAO 12-12. Hyams, K. C., F. S. Wignall, and R. Roswell. 1996. War syndromes and their evaluation: From the US Civil War to the Persian Gulf War. Annals of Internal Medicine 125(5):398-405. IOM (Institute of Medicine). 2000. Gulf War and Health, Volume 1: Depleted Uranium, Pyridostigmine Bromide, Sarin, Vaccines. Washington, DC: National Academy Press. IOM. 2001. Gulf War Veterans: Treating Symptoms and Syndromes, The Compass Series. Washington, DC: National Academy Press. IOM. 2003. Gulf War and Health, Volume 2: Insecticides and Solvents. Washington, DC: The National Academies Press. IOM. 2004. Gulf War and Health: Updated Literature Review of Sarin. Washington, DC: The National Academies Press. IOM. 2005. Gulf War and Health, Volume 3: Fuels, Combustion Products, and Propellants. Washington, DC: The National Academies Press. IOM. 2006a. Amyotrophic Lateral Sclerosis in Veterans: Review of the Scientific Literature. Washington, DC: The National Academies Press. IOM. 2006b. Gulf War and Health, Volume 4: Health Effects of Serving in the Gulf War. Washington, DC: The National Academies Press. IOM. 2007. Gulf War and Health, Volume 5: Infectious Diseases. Washington, DC: The National Academies Press. IOM. 2008. Gulf War and Health: Updated Literature Review of Depleted Uranium. Wash- ington, DC: The National Academies Press. IOM. 2010a. Gulf War and Health, Volume 8: Update of Health Effects of Serving in the Gulf War. Washington, DC: The National Academies Press.

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INTRODUCTION 19 IOM. 2010b. Returning Home from Iraq and Afghanistan: Preliminary Assessment of Readjust­ ent Needs of Veterans, Service Members, and Their Families. Washington, m DC: The National Academies Press. Jones, E. 2006. Historical approaches to post-combat disorders. Philosophical Transactions of the Royal Society of London—Series B: Biological Sciences 361(1468):533-542. Jones, E., and S. Wessely. 2005. War syndromes: The impact of culture on medically ­unexplained symptoms. Medical History 49(1):55-78. Kline, A., M. Falca-Dodson, B. Sussner, D. S. Ciccone, H. Chandler, L. Callahan, and M. Losonczy. 2010. Effects of repeated deployment to Iraq and Afghanistan on the health of New Jersey Army national guard troops: Implications for military readiness. American Journal of Public Health 100(2):276-283. Lew, H. L., J. D. Otis, C. Tun, R. D. Kerns, M. E. Clark, and D. X. Cifu. 2009. Prevalence of chronic pain, posttraumatic stress disorder, and persistent postconcussive symptoms in OIF/OEF veterans: Polytrauma clinical triad. Journal of Rehabilitation Research and Development 46(6):697-702. Li, B., C. M. Mahan, H. K. Kang, S. A. Eisen, and C. C. Engel. 2011. Longitudinal health study of US 1991 Gulf War veterans: Changes in health status at 10-year follow-up. American Journal of Epidemiology 174(7):761-768. Mahoney, D. B. 2001. A normative construction of Gulf War syndrome. Perspectives in ­ iology & Medicine 44(4):575-583. B RAC (Research Advisory Committee on Gulf War Veterans’ Illnesses). 2008. Scientific Find- ings and Recommendations. Washington, DC: RAC. Reisinger, H. S., S. C. Hunt, A. L. Burgo-Black, and M. A. Agarwal. 2012. A population approach to mitigating the long-term health effects of combat deployments. Preventing Chronic Disease 9:E54. Shriver, T. E., and D. D. Waskul. 2006. Managing the uncertainties of Gulf War illness: The challenges of living with contested illness. Symbolic Interaction 29(4):465-486. Swoboda, D. A. 2006. The social construction of contested illness legitimacy: A grounded theory analysis. Qualitative Research in Psychology 3(3):233-251. VA (Department of Veterans Affairs). 2011. Gulf War Era Veterans Report: Pre-9/11 (August 2, 1990 to September 10, 2001). Washington, DC: VA. VA. 2012a. About the Gulf War. http://www.publichealth.va.gov/exposures/gulfwar/basics. asp (accessed May 8, 2012). VA. 2012b. Gulf War Service. http://www.publichealth.va.gov/exposures/gulfwar/military- service.asp (accessed May 18, 2012). Walker, R. L., M. E. Clark, and S. H. Sanders. 2010. The “postdeployment multi-symptom disorder”: An emerging syndrome in need of a new treatment paradigm. Psychological Services 7(3):136-147. Zavestoski, S., P. Brown, S. McCormick, B. Mayer, M. D’Ottavi, and J. C. Lucove. 2004. Patient activism and the struggle for diagnosis: Gulf War illnesses and other medically unexplained physical symptoms in the US. Social Science & Medicine 58(1):161-175.

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