Among many providers, chronic fatigue syndrome (CFS) gets no respect, but the Institute of Medicine (IOM) hopes that “systemic exertion intolerance disease” (SEID) will.
That’s the new name the IOM gives CFS—actually called myalgic encephalomyelitis/chronic disease syndrome (ME/CFS), because myalgic encephalomyelitis is the name used outside of the United States.
Why the name change? Because chronic fatigue syndrome perpetuates the belief among many physicians that the condition is psychogenic. Meanwhile, myalgic encephalomyelitis doesn’t work because there is a lack of evidence for encephalomyelitis, or brain inflammation, in many patients.
It is a real disease that needs to be cared for, says the 235-page report. IOM notes that SEID affects between 830,000 to 2.5 million Americans. The total economic costs range from $17 billion to $24 billion annually.
“Many health care providers are skeptical about the seriousness of ME/CFS, mistake it for a mental health condition, or consider it a figment of the patient’s imagination,” the IOM states.
That stops now—hopefully. The IOM wants to disseminate new diagnostic criteria to providers and the public. Here are some of symptoms of SEID:
Other symptoms, such as gastrointestinal problems or sore throat, had been exhibited in SEID patients, but were not common enough to be included in the new diagnostic criteria.
The diagnosis is made if the patient exhibits these symptoms at least half the time, with moderate, substantial, or severe intensity. This is also not, the IOM says, a “diagnosis of exclusion” and could be applied to patients who have other conditions that could give them fatigue.
Often physicians attributed SEID to the poor physical conditions of their patients. The IOM, however, notes that some people who have come down with SEID are in great shape, and even some athletes are cut down by the disease.
The IOM warns against physicians doing the expensive testing for SEID that had been done in some studies, noting that many of those tests are onerous and not always available.
“Instead, the diagnosis should be primarily based on appropriate history, physical examination, and targeted symptom-based workup,” the IOM states.
That still could drive up health care costs, as an estimated 84% to 91% of SEID patients have yet to be diagnosed.
This won’t be the final word on SEID. The amount of evidence available to understand subgroups of people with the disease is still limited. The IOM hopes its report will generate more studies, and it plans to revisit the issue in about five years.