Managing Systemic Exertion Intolerance Disease (SEID)

A New Name for Chronic Fatigue Syndrome

Paul G. Auwaerter, MD


March 03, 2015

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Hello. This is Paul Auwaerter from the Johns Hopkins Division of Infectious Diseases, Johns Hopkins University in Baltimore, Maryland, speaking for Medscape Infectious Diseases.

In my clinic, some of the most challenging outpatient visits are with patients who come in with long-standing problems that include fatigue, perhaps sleep difficulties, and brain fog.[1] These patients are really looking for discrete answers and help. They often are not functioning well and perhaps are having problems in school or at work. I find that most of these patients are quite bright; they are analytical and sophisticated and hope that something can be found to explain their symptoms.

Over years and decades—perhaps over a century—these sorts of symptom complexes have been difficult for patients and physicians alike. William James, the American philosopher and educator, coined the term "Americanitis" because these symptoms—which some called "neurasthenia'—were thought to be a product of environmental factors: the fast-paced, American, capitalistic lifestyle that caused a great deal of stress. That theory fell out of favor in the 1920s.

In the 1930s and 1940s, the idea that a specific infectious pathogen could be driving this syndrome, perhaps brucellosis, was quite popular.[2] The discovery of the Epstein-Barr virus brought about a hypothesis regarding chronic Epstein-Barr virus infection. More recently, Lyme disease has been proposed as a potential explanation.[2] Patients want to embrace something that makes sense. In fact, science has determined that the human brain likes distinct answers, and that uncertainty seems to amplify problems.[3]

Within this context, more than 20 years ago, a case definition was developed for what now has been termed "chronic fatigue syndrome," or "myalgic encephalomyelitis."[1] This definition comprises criteria that include more than 6 months of symptoms, including an inability to perform customary activities.

This has created a fair amount of controversy and sometimes stigma. Many physicians and others believe this could be a psychosomatic illness; others believe it is quite real. Moreover, there is symptom overlap with other syndromic problems, including fibromyalgia and irritable bowel syndrome.

Within this context, the Institute of Medicine (IOM) was charged by several federal agencies to come up with a new name, some subcategories, and other aspects.[4] In sum, the IOM committee decided that it would be important to rename chronic fatigue syndrome something that captures the nature of this. They have called it "systemic exertion intolerance disease," or SEID.

Will a New Name and Simpler Criteria Simplify Diagnosis and Treatment?

The criteria for SEID[4] are supposed to be simpler than the Centers for Disease Control and Prevention (CDC) criteria from 1994 and include substantial decline in functional activities for at least 6 months, postexertional fatigue, and nonrestorative sleep. The criteria require all three, and then at least one of the following: cognitive impairment (I believe they mean of a subjective nature) or orthostatic intolerance. The patient also can have some of the other symptoms that were included in the definition of chronic fatigue syndrome, such as gastrointestinal issues, pain, stimuli hypersensitivity, lymphadenopathy, and sore throat.

Perhaps calling this by a different name may help. I struggle with how to convey this information, or how I may use it with patients who are aware of chronic fatigue syndrome. I generally can explain to them some of the issues that are part of this quite heterogeneous disorder. Clearly, some patients have an authentic infection and then never seem to recuperate. This can occur after Lyme disease, rarely after infectious mononucleosis, and perhaps others.[2] For others, there seems to be no precipitating factor. I really empathize and struggle to try to help individualize the care of patients with this.

The IOM report no doubt will stir a fair amount of interest in, if not controversy about, this disorder. As the IOM report suggests, this condition afflicts a large number of people and probably has a significant economic impact because it affects younger people.[4] Clearly, children and young adults also seem to suffer from this. Funding has been poor, and the understanding of the pathophysiology is very difficult. Of course, that does not well-inform treatment choices.

What do I do in my office? Simon Wessely and colleagues,[5] who did a fair amount of work on chronic fatigue syndrome and Gulf War syndrome, and others[6,7] have suggested that graded exercises, conditioning to build up tolerance, and cognitive-behavioral therapy are some of the best strategies to help people feel better. There is a lot of discussion about medication trials. But I believe that until we reach a better understanding, this syndrome is very difficult to appreciate.

In addition, I believe each of these patients has a very individualized set of problems that require some tailoring of strategies. Moreover, it is essential to be certain that you are not missing another medical diagnosis that could explain the patient's symptoms.

Let us hope that the IOM report will stimulate additional interest in this area, similar to the 1994 report. Unfortunately, many of those funds that were originally meant for chronic fatigue syndrome may or may not have found the right home. We hope that this time it comes to a better end, for these are patients who are looking for answers. As a physician, I will try to offer better help, and perhaps this is a start.

Thanks for listening.


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