Chronic fatigue syndrome (CFS): No cause, no cure, no hope? No way, says Suzanne Vernon, Ph.D., Scientific Director of the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America in the Nov/Dec installment of the Post‘s Medical Mailbox. For those not familiar with CFIDS, it’s important to understand that this kind of fatigue isn’t merely feeling tired after a busy day or a lousy night of sleep. It’s severe, all-encompassing, and often accompanied by persistent problems with memory, joint pain, and feeling sick after exertion (see “Quick Guide to CFS” after the interview below). But the chronic disease has a misleading name, an unclear cause, and symptoms you can’t see. In this web-exclusive report, we continue our conversation with Vernon about the challenges surrounding chronic fatigue syndrome and the “tremendous urgency” of researchers to better understand, diagnosis, cure, and even prevent the distressing and persistent problem.
Post: Is CFS a “real” disease?
Vernon: There are more than 4,500 papers in the medical literature that describe disturbed or altered biology in people with CFS, so, yes, the disease is very real. The U.S. Centers for Disease Control & Prevention estimates that at least one million American men, women, and children have CFS. But its devastating effects are sometimes hard to see; people with CFS can look relatively well, especially to those who see them only on a relatively “good” day. Confusion also stems from the possibility that the disease may have several causes, and the fact that it has been described by different names at different times, such as post-viral fatigue syndrome, myalgic encephalomyelitis (ME), chronic fatigue and immune dysfunction syndrome (CFIDS), and ME/CFS.
Post: Is there a specific test or symptom that signals CFS?
Vernon: None have yet been identified, and CFS remains a diagnosis of exclusion. This means doctors diagnose CFS by ruling out other medical and psychiatric diseases that could explain a patient’s symptoms. The medical definition of CFS crafted in the late 1980s is woefully nonspecific. Today, we are addressing the need for better diagnostics and treatment through strategically guided research based on knowledge gained over the past 25 years of CFS research and from other areas of science and medicine.
Post: Are researchers making strides in finding the cause or causes of the disease?
Vernon: There is a great deal of published evidence that acute infection with a variety of different pathogens can lead to CFS in about 10 percent of the cases. So, infection is a plausible cause, possibly in combination with an underlying immune system vulnerability. Understanding who is at greatest risk for severe infection, detecting these infections early, and learning more about the immune response are important approaches to preventing CFS in the future.
Keep in mind that we don’t know the cause of most chronic diseases, yet progress is possible. For example, the “War on Cancer” signed into law by President Richard Nixon in 1971 was aimed at improving cancer treatment and finding cures by increasing research. Indeed, there has been important progress, especially in cancer screening and treatment, even though we still don’t know the cause of most cancers.
Likewise, important findings from more than two decades of CFS research gives me hope that effective treatments will be identified. Currently the handful of physicians in the U.S. who have dedicated their medical careers to caring for CFS patients use a combination of treatment strategies to help patients improve function and quality of life. It requires a partnership and a trial-and-error approach that can be time-consuming and frustrating to both patient and physician. In the future, chemical biomarkers identified by CFIDS Association-funded researchers could help guide treatment using more objective and targeted approaches.
Post: What are biomarkers?
Vernon: Biomarkers can be thought of as indicators not only of disease, but also of response to treatment or even good health. Think of cholesterol, for example. Cholesterol is vital for life, but high levels of bad cholesterol are a biomarker indicating increased risk of cardiovascular illnesses. Biomarker research has found certain molecules on blood cells that occur at different levels in CFS patients compared to healthy people and people with other diagnoses. Other studies on CFS biomarkers may help identify characteristics of people who do not recover from an acute infection and why that might happen. In addition, we are finding that differences between CFS patients and other groups often show up more clearly when the subjects are studied after a short exercise challenge. Post-exertional relapse is one of the hallmarks of CFS, and it seems to provoke a different biological response than testing patients at rest.
Post: What do people struggling with CFS need to know?
Vernon: There is hope. Right now, awareness about and interest in CFS are at an all-time high and there is tremendous urgency within the scientific community to address the need for better diagnostics and treatment through strategically guided research based on knowledge gained over the past 25 years of CFS research and from other areas of science and medicine. While some research is not panning out, other areas are heating up. There are new technologies such as genomics, proteomics, and imaging that give us new tools to understand biological abnormalities at the molecular, cellular, and clinical level. The CFIDS Association is laser-focused on making CFS widely understood, diagnosable, treatable, and preventable, and we are making faster progress than ever before.
Quick Guide to Chronic Fatigue Syndrome (CFS)
* People of every age have CFS, but the illness is most common in those ages 40 to 59.
* More than 80 percent of CFS patients in the U.S. don’t know they have it.
* CFS includes four or more of the following characteristics (in addition to fatigue): symptoms that relapse after physical or mental exertion; unrefreshing sleep; substantial memory or concentration problems; muscle pain; pain in multiple joints; headaches of a new type, pattern, or severity; sore throat; and tender neck or armpit lymph nodes.
* CFS is not caused by depression, although the two illnesses often coexist. Many patients with CFS don’t have any psychiatric disorder.
–CFIDS Association of America