A Disease Once Referred to as “Americanitis”
Many healthcare providers struggle with the diagnosis of chronic fatigue syndrome (CFS). Is it real or psychosomatic? Does it follow an infection such as Lyme disease? How does it differ from fibromyalgia or irritable bowel syndrome and so on?
Also, patients present with a complex set of symptoms including fatigue, sleeplessness, pain, and more, all made worse upon exertion.
Because of these complexities, the Institute of Medicine (IOM) was asked by several federal agencies to review the evidence base for CFS. In 2015 they recommended criteria for timely diagnosis and a new name for the disease. The report included the following:
- Between 836,000 and 2.5 million Americans suffer from chronic fatigue syndrome (also called myalgic encephalomyelitis or ME.)
- The disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by an exertion of any sort.
- CFS can severely impair patients’ ability to conduct their normal lives. Yet many people struggle with symptoms for years before receiving a diagnosis.
- Fewer than one-third of medical school curricula and less than half of medical textbooks include information about CFS.
- Although many healthcare providers are aware of CFS, they may misunderstand the disease or lack knowledge about how to diagnose and treat it. Such gaps in understanding lead to delayed diagnoses and inappropriate management of patients’ symptoms.
New Name for Chronic Fatigue Syndrome*
It is thought that the term “chronic fatigue syndrome” perpetuates a misunderstanding of the illness and contributes to the dismissive attitudes of healthcare providers and the public. Also, the term “myalgic encephalomyelitis” is inappropriate because there is a lack of evidence for encephalomyelitis, and myalgia is not a core symptom of the disease.
The name proposed by the IOM is systemic exertion intolerance disease or SEID. This name captures a central characteristic of the disease: the fact that exertion of any sort—physical, cognitive, or emotional—can adversely affect patients in many organ systems and in many aspects of their lives.
Proposed Diagnostic Criteria for Systemic Exertion Intolerance Disease*
Diagnosis requires that the patient have the following three symptoms:
- A substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities, that persists for more than 6 months and is accompanied by fatigue, which is often profound, is of new or definite onset (not lifelong), is not the result of ongoing excessive exertion, and is not substantially alleviated by rest.
- Post-exertional malaise
- Unrefreshing sleep
At least one of the two following manifestations is also required: 1. Cognitive impairment or 2. Orthostatic intolerance. Frequency and severity of symptoms should be assessed. The diagnosis of ME/CFS should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.
*Edited from Beyond Myalgic Encephalitis / Chronic Fatigue Syndrome – Redefining an Illness – Institute of Medicine
For patients and physicians alike, conditions presenting complex symptoms have been challenging over the years. In the late 1800s, the term “Americanitis” was coined by William James, a famous psychologist. He thought the symptoms, sometimes referred to as neurasthenia, were a result of the fast-paced, American, capitalistic lifestyle that caused a great deal of stress. This idea lost favor in the 1920s.
During the 30s and 40s, it was thought that pathogens could be the cause of the symptoms and later Lyme disease was considered as a probable cause.
Chronic fatigue syndrome was first used in medical literature to describe an illness that seemed like chronic active Epstein-Barr virus (EBV) infection. In 1988, the term was defined in a publication: “Chronic fatigue syndrome: a working case definition.”
Our understanding of a disease is formed by the language used to identify it. Although the IOM proposed systemic exertion intolerance disease, or SEID as the new name to better describe CFS in 2015, I think we can still consider it an emerging term. Up to Date, Mayo Clinic, and many other reputable institutions are now using it in their publications. Strangely enough, although its own ICD-10 was recommended by the IOM committee, it appears to still fall under CFS (chronic fatigue syndrome). Granted systemic exertion syndrome or SEID does not easily roll off one’s tongue, but I recommend you add to your vocabulary, and if you are an instructor, add it to your medical terminology course content.