The press event was held November 3, 2006, at the National Press Club in Washington, DC. Dozens of reporters from national and local media outlets across the United States were in attendance, and many others participated via phone link. It was incredibly exciting to see CFS in the national spotlight in the first-ever national education campaign.
Kimberly McCleary, president and CEO of the CFIDS Association of America, moderated the press conference. She began the press conference, saying, “This event is a real milestone in the life of every chronic fatigue syndrome patient, and it marks what we hope will be a turning point in the public’s recognition of the severity and complexity of CFS, and in the ability of health care professionals to diagnose it and care for people who suffer from it.”
Dr. Julie Gerberding, director of the Centers for Disease Control and Prevention (CDC), called the campaign “a watershed moment for the millions of Americans who live with chronic fatigue syndrome, or CFS.” She continued, “For too long, CFS has been shrouded in mystery, controversy and misinformation. Today, we talk about the first national public awareness campaign in the history of the illness.”
Dr. John Agwunobi, Assistant Secretary for Health, discussed the renewal of the Department of Health and Human Services charter for the Chronic Fatigue Syndrome Advisory Committee and announced seven new NIH grants for CFS research. “These awards will support a wide range of studies into a variety of biologic mechanisms important to CFS. From basic pathophysiology, to the role of certain triggering and perpetuating factors, to biomarkers of disease and disease severity, to improved treatment of the condition, these investigators seek to explore and document progress in understanding CFS, enhancing our ability to diagnose and manage it.”
Dr. William Reeves, chief of the CFS research program at CDC, discussed the scope of CDC’s research on CFS and the findings that indicate why this illness is a public health concern for the Centers for Disease Control and Prevention. He noted that studies “found that CFS follows a pattern of remitting and relapsing symptoms and that complete recovery is rare. We also learned that patients who get appropriate care early in their illness have better long-term health outcomes, again underscoring the need to improve health care professionals’ abilities to diagnose and manage the illness.”
Dr. Anthony Komaroff, a CFS physician and researcher at Harvard Medical School, told reporters that while we still don’t understand the cause or causes of the illness, “the good news is that literature from over 4,000 published research studies has revealed a number of physical or biological abnormalities in CFS. The illness is not simply a set of symptoms people imagine they have, and it is not a psychological illness. In my view, that debate—which has raged for the past two decades in the United States and abroad—should finally be over.”
Dr. Nancy Klimas, a CFS physician and researcher at the University of Miami, remarked, “Historically, the lack of credibility afforded this illness has been a key obstacle to understanding it. Today, with solid evidence that CFS has identifiable biologic underpinnings, and with evidence that people with CFS experience a level of disability equal to that of patients with multiple sclerosis, advanced HIV disease and undergoing chemotherapy, I hope we can begin to put an end to the stigma surrounding this illness.” Dr. Klimas also focused on treatments, saying, “Although there’s no single treatment—no hoped for ‘magic bullet’—that fixes the illness at its core, there are treatments that can improve symptoms, increase function and allow CFS patients to engage in activities of daily living. Current best practices for clinical care include a combination of symptom management, activity management and exercise therapies.”
Adrianne Ryan provided the final perspective on the illness—a patient’s story—a fitting reminder to the media and government officials listening to the press conference that there are more than one million Americans suffering from CFS, each with an equally compelling story of the toll CFS has taken on their lives. She described her six-year nightmare of having both her body and her mind fail her, saying, “When I tried to resume even moderate activities, I would collapse, often for weeks at a time. Sometimes even taking a shower would be too much. Over and over the cycle would be repeated. I would attempt to return to normalcy only to relapse into pain, fatigue and a life lived in isolation.”