The Institute of Medicine (IOM) Proposes New Diagnostic Criteria and name for Chronic Fatigue Syndrome

Between 836,000 and 2.5 million people suffer from what is now known as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The actual number is likely higher since many physicians misunderstand the disease and, as a result, some people suffer from the syndrome for years without being properly diagnosed.

Since only about half of medical school textbooks include information about ME/CFS, and only about one-third of medical schools include any information about the syndrome in their curriculum, doctors themselves often lack the necessary knowledge to diagnose the disease. To compound the problem, there is no objective scientific test, like blood or urine tests, x-rays, MRI or CAT scans, to use as diagnostic tools. Diagnosis is based on a subjective evaluation of the patient’s symptoms.

In response to requests by many health care organizations, the Institute of Medicine (IOM) examined the evidence for the syndrome. The IOM recently released the report of its findings in which, among other things, it recommends a set of diagnostic criteria for physicians to use that will facilitate diagnosis and treatment and foster a better understanding among providers and the public concerning this often debilitating disease. It also proposed changing the name of the syndrome to Systemic Exertion Intolerance Disease (SEID).

IOM’s Diagnostic Criteria

One goal of the IOM report is to emphasize that whether it is called ME/CFS or SEID, it “is a serious, chronic, complex, systemic disease that can profoundly affect the lives of patients.” Patients report extreme fatigue to a degree that performing daily tasks is difficult or impossible. Even so, they are often met with a “dismissive attitude” by health care professionals who misdiagnose the patient with malingering or a mental health condition.

The IOM proposes a set of diagnostic criteria that it expects will, when the criteria are applied, result in the proper diagnosis for a large population of patients who currently are suffering but left without a diagnosis or treatment. According to the IOM, three
core symptoms of the disease are:

1. Impaired day-to-day functioning in all areas that persists for six months and is accompanied by profound fatigue that is not caused by excessive exertion and not relieved by rest.

2. Post-exertional malaise which means the symptoms worsen after cognitive, emotional or physical activity.

3. Unrefreshing sleep.

Additionally, the patient will also suffer from either cognitive impairment or orthostatic intolerance (symptoms worsen upon standing and are alleviated by lying down). The IOM committee outlined a nationwide educational plan to provide the public, including health care providers and patient groups, with the new diagnostic criteria.

Expected Effect of the New Diagnostic Criteria on Claimants on Disability

No two disability cases are alike and the medical records for each claimant must be thoroughly reviewed. The success of the claim often depends on the understanding of the treating physician of the medical condition and the physician’s ability to properly document in detailed notes on how that conditions places limits and restrictions on the activity of the patient. With the dissemination of the IOM report and the acknowledgment of the seriousness of the disease, coupled with the debilitating nature of the diagnosis itself, it will be harder for disability carriers to challenge CFS, also now known as SEID, as a debilitating condition.

We have many articles about CFS disability claims on this page.

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There is one comment so far

  • Thank for the informative article. Restorative sleep is key component. Other symptoms are a given without it. Problem is promotion of, and the cost of, safer, less effective newer sleep meds. So what is actually an old problem, now codified with new and changing nomenclature, was in the past, easily treated with very effective, inexpensive, extremely safe when not over consumed, meds known as barbiturates, Seconal, for example, previously widely used in pregnant women without indecent. All the complexity surrounding chronic fatigue, with few exceptions, boil down to this paternalistic issue of preventing self-harm from an otherwise perfect older medication for insomnia. Simply speaking this is an old problem of sleep deprivation now inadequately treated, previously easily treated, except for occasional deaths from abuse. Medical change is not always good. The unintended consequences, legion.

    R. Chris Kuhne, MD, Ob/Gyn 30yrs.Jul 22, 2015  #1

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