CFIDS Association President and CEO Kim McCleary

From the CEO's Desk

February 2010

During last week’s State of the Union address, President Obama announced a three-year spending freeze on non-military domestic discretionary spending, beginning in fiscal year 2011. Affecting about one-sixth of the federal budget, this freeze will tighten research funding by the National Institutes of Health (NIH) and other agencies. Not good news for people in need of research to advance diagnostics and treatments, and not good news for researchers trying to make these important discoveries. In spite of these budget forecasts, we will continue to press traditional sources of funding for increased support of CFS research.

For the past several months, with help from the federal relations firm with which we work closely, B&D Consulting, we’ve been identifying new sources of federal funds to supplement the fairly meager amounts being spent by NIH and the U.S. Centers for Disease Control & Prevention (CDC) to research CFS. One potential source of medical research funding is the Department of Defense. Breast cancer activists helped to establish a program for funding that has grown considerably over the years. Based on this model, the Congressionally Directed Medical Research Program provides support for research with clear scientific merit with direct relevance to the health of the warfighter, the military family and the American public. Funds appropriated by Congress totaled $50 million in FY09 and have provided funding for 247 projects in more than 60 topic areas. Many projects funded by this program have begun to yield military combat health support technologies and products in the areas of combat casualty care, military infectious diseases, military operational medicine, chronic disease management, and medical chemical and biological defense.

In order to secure support for a topic to be included as a priority for this program, there must be demonstrable relevance to the health of warfighters and veterans. Based on existing evidence, CFS is an area of immediate and ripe opportunity for contributing to the improved health and readiness of our troops and their family members.

Multisymptom illnesses have been reported among military personnel returning from combat since the Civil War. However, following Operations Desert Shield and Desert Storm in the Persian Gulf (1990-1991), the scope and impact of such illnesses received heightened attention and have been studied by the Department of Veterans Affairs, the NIH, the CDC, and the Institute of Medicine. A seminal study comparing the health of deployed and non-deployed Gulf War era veterans established a case definition for chronic multisystem illness, characterized by fatigue, cognition-mood and musculoskeletal symptoms, and also highlighted the overlap of veterans’ illnesses with CFS. A report issued in 2008 by the Research Advisory Committee on Gulf War Veterans’ Illnesses states that at least one-fourth of the 697,000 veterans of the Gulf War have experienced multisystem illnesses of this nature.

Service men and women returning from Operation Enduring Freedom and Operation Iraqi Freedom are also experiencing chronic multisystem illnesses. Female service members’ expanded involvement in these conflicts may present new post-deployment health issues as they return from Iraq and Afghanistan. CFS occurs at higher rates among women compared to men and the prevalence of CFS among veterans of the current military actions may be even higher than was seen after the Persian Gulf War.

Studies of CFS have documented abnormalities in the immune, endocrine, autonomic nervous and central nervous systems. CFS has also been linked to various environmental exposures, including viruses and toxins. These linkages echo many of the exposures faced by military service personnel in conflict areas – living in extreme climates and environments, extreme physical exertion, multiple vaccinations, exposure to foreign viruses and microbes and toxic substances. These factors may put service men and women at a higher risk of developing CFS. The October 2009 study that detected XMRV in CFS provides possible causal and pathophysiology clues for CFS and would be important to examine in military personnel and family members who report CFS or CFS-like symptoms. This research would augment other studies to advance our understanding of CFS and how to objectively diagnose, effectively treat and ultimately prevent this disabling condition.

Our “You Matter” section this month features a personal story from retired Chief William Vernon, who served in Operations Desert Shield and Desert Storm. After his deployment he was diagnosed with Gulf War Syndrome and continues to experience persistent health problems that began during his military service. We’re grateful for Bill’s candid account and his willingness to share it publicly. In the spirit of full disclosure, his sister, Suzanne, is our Scientific Director. Our interest in this topic stems not from personal associations, but from the commitment to expand research on CFS in all populations affected by it and our dedication to speed validating studies that enable full recovery of all the lives diminished by CFS.

Kim McCleary
President & CEO
February 3, 2010

P.S. If you are an active duty or veteran member of the military and CFS affected your military service, please send us a confidential message at cfidsadvocacy @cfids.org.

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