IOM Diagnostic Guidelines and Algorithm for ME/CFS

IOM Diagnostic Guidelines and Algorithm for ME/CFS

Resource Type
Report or Study
[/fright]The Institute of Medicine produced a new guide to diagnosing chronic fatigue syndrome 2015. This federally funded report by ME/CFS experts and others was a year in the making. Among others it includes a simple diagnostic test.

Diagnostic Criteria for ME/CFS

Diagnosis requires that the patient have the following three symptoms:
  1. 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, and
  2. Post-exertional malaise,* and
  3. 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 (SEID) should be questioned if patients do not have these symptoms at least half of the time with moderate, substantial, or severe intensity.

Key Considerations in Diagnosing ME/CFS (SEID)
“When I do any activity that goes beyond what I can do—I literally collapse—my body is in major pain. It hurts to lay in bed, it hurts to think, I can’t hardly talk—I can’t find the words. I feel my insides are at war.”
  • ME/CFS (SEID) is a serious, chronic, and systemic disease that frequently and dramatically limits the activities of affected patients.
  • A thorough history, physical examination, and targeted workup are necessary to determine a differential diagnosis and are often sufficient for diagnosis of ME/CFS (SEID).
  • Physicians should diagnose ME/CFS (SEID) if diagnostic criteria are met following an appropriate history, physical examination, and medical workup, including appropriate specialty referrals.
  • It is essential that clinicians assess the severity and duration of symptoms over the past month or more. Chronic, frequent, and moderate or severe symptoms are required to distinguish ME/CFS (SEID) from other illnesses.
  • The proposed criteria require symptom duration for 6 months to make a diagnosis in light of evidence that most other causes of similar fatigue do not last beyond 6 months.
  • Patients who do not meet the criteria for ME/CFS (SEID) should continue to be diagnosed by other criteria as their symptoms and evaluations dictate. These patients should also receive appropriate care. (Conditions that may approach but not meet the criteria for ME/CFS [SEID] include, for example, protracted recovery from EBV mononucleosis or gradual emergence of a different chronic illness, such as multiple sclerosis, colon cancer, or a primary sleep disorder.)
  • Comorbidities such as fibromyalgia and irritable bowel syndrome are common in ME/CFS (SEID) patients. These comorbidities should be diagnosed and treated when caring for patients. The presence of other illnesses should not preclude patients from receiving a diagnosis of ME/CFS (SEID) except in the unlikely event that all symptoms can be accounted for by these other illnesses.
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