A committee of health experts convened by the Institute of Medicine has proposed new diagnostic criteria and a new name for the disease in order to more accurately reflect the main characteristics of the condition and improve levels of treatment.

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Symptoms of the disease can persist for several years. Unfortunately, many patients never fully regain their pre-illness levels of health and functioning.

Chronic fatigue syndrome (CFS), also referred to as myalgic encephalomyelitis (ME), affects between 836,000 and 2.5 million Americans. The disease causes a variety of symptoms – cognitive dysfunction, fatigue, pain and sleep abnormalities – and has a profoundly disruptive effect on the lives of those who develop it.

People with the disease report experiencing difficulty with the completion of routine tasks, and at least one-quarter have been confined to their home or bed due to the effects of their condition.

According to the Institute of Medicine (IOM), however, an estimated 84-91% of people with ME/CFS are yet to be diagnosed.

Less than half of medical textbooks and less than one third of medical school curricula contain any information about the disease. The IOM report there is a lack of knowledge that results in delayed diagnoses and “inappropriate management of patients’ symptoms.”

The IOM also state that many health care providers are currently skeptical about how serious a problem ME/CFS can be, believing it instead to be a mental health condition or even a pretense of the patient:

“Misconceptions or dismissive attitudes on the part of health care providers make the path to diagnosis long and frustrating for many patients. The committee stresses that health care providers should acknowledge ME/CFS as a serious illness that requires timely diagnosis and appropriate care.”

Following a comprehensive examination of the existing evidence and literature for the disease, the committee proposes a new set of diagnostic criteria for ME/CFS. The committee hopes that these criteria will allow patients who are currently undiagnosed to receive appropriate care and recognition.

Within the new criteria, a patient can be diagnosed if they display the following symptoms, described as “the core symptoms of the disease”:

  • Impaired day-to-day function
  • Worsening of symptoms after physical, emotional or cognitive exertion (post-exertional malaise)
  • Unrefreshing sleep.

In addition, patients must also exhibit at least one of the following two symptoms:

  • Cognitive impairment
  • Onset of symptoms when standing up (orthostatic intolerance).

The frequency and severity of the symptoms must also be assessed, the committee states, and the diagnosis questioned if symptoms do not occur at least half of the time with moderate, substantial or severe intensity.

New diagnostic criteria will not benefit patients unless they are put into practice by health care providers. To enable this, the committee have also planned a nationwide strategy to disseminate information about the disease and the new criteria. Efforts will target health care providers, schools, professional societies and patient groups alike.

Perhaps the most dramatic proposal to come from the review, however, is the recommendation of a new name for the disease. The committee states that a new name is needed due to shortcomings of the disease’s previous names that may have contributed to misconceptions about the illness.

ME is deemed inappropriate due to a lack of evidence for brain inflammation (encephalomyelitis) in patients with the condition. Muscle pain (myalgia) is also not considered to be one of the disease’s core symptoms.

Previous research has suggested that “chronic fatigue syndrome” as a name may lead to the trivialization of the illness and contribute to the level of skepticism that currently surrounds it.

A new, more representative name – systemic exertion intolerance disease (SEID) – has been recommended.The committee explains its choice:

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. The committee believes systemic exertion intolerance disease appropriately captures the complexity and severity of the illness.”

It is hoped that the efforts of the committee will lead to improvements in both diagnosis and care for this debilitating illness. Increased rates of diagnosis will also lead to the identification of larger groups of patients who could be vital in research efforts toward finding a cause and cure for SEID.

Recently, Medical News Today reported on a study suggesting there may be an association between SEID in women and early menopause, as well as other gynecologic conditions.