Systemic Exertion Intolerance Disease

Authors
The committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome consisted of Ellen Wright Clayton, Margarita Alegría, Lucinda Bateman, Lily Chu, Charles Cleeland, Ronald Davis, Betty Diamond, Theodore Ganiats, Betsy Keller, Nancy Klimas, A Martin Lerner, Cynthia Mulrow, Benjamin Natelson, Peter Rowe, and Michael Shelanski.

Development
In 2014, the U.S. Department of Health and Human Services, the National Institutes of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control & Prevention, the Food and Drug Administration, and the Social Security Administration asked the Institute of Medicine (IOM) to convene an expert committee to examine the evidence base for ME/CFS. In Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, the committee proposes new diagnostic criteria that will facilitate timely diagnosis and care and enhance understanding among health care providers and the public. These criteria, based on expert analysis and the most up-to-date scientific literature, are streamlined for practical use in the clinical setting. The IOM committee also recommends that the name of the disease be changed—from ME/CFS to systemic exertion intolerance disease (SEID)—to more accurately capture the central characteristics of the illness.

The proposed name was to hone in on key aspects of ME/CFS: "Systemic" would give credence to the disease being body wide. "Exertion Intolerance" would key doctors into understanding that the patient CANNOT tolerate exertion of any kind; physical, cognitive or emotional. (Intolerance is well understood in the clinical world in that there is a disease at hand as other diseases such as gluten intolerance is a serious medical issue and gluten CANNOT be consumed.) "Disease" gave the self explanatory label of being a biologic disease.

Diagnostic Criteria
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.

February 10, 2015, the IOM released a Clinicians Guide
The IOM proposed the name of Systemic Exertion Intolerance Disease (SEID) and Diagnostic Criteria.

The National Academies of SCIENCES-ENGINEERING-MEDICINE and Institute Of Medicine Report
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

Read the report

 * Key facts (two pages)
 * Report brief (four pages)
 * Download full report (282 pages)
 * Diagnostic Algorithm Chart
 * Proposed Diagnostic Criteria Chart
 * Read the full 282 page report online
 * Front matter
 * Summary
 * 1. Introduction
 * 2. Background
 * 3. Current Case Definitions and Diagnostic Criteria, Terminology, and Symptom Constructs and Clusters
 * 4. Review of the Evidence on Major ME/CFS Symptoms and Manifestations
 * 5. Review of the Evidence on Other ME/CFS Symptoms and Manifestations
 * 6. Pediatric ME/CFS
 * 7. Recommendations
 * 8. Dissemination Strategy
 * Public Session Agendas
 * GRADE Grid Template
 * Disability in ME/CFS
 * Questionnaires and Tools That May Be Useful for Assessing ME/CFS Symptoms
 * Biographical Sketches of Committee Members, Consultants, and Staff

"Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" Official video presentation

New Clinical Definitions for ME/CFS - Dr. Lucinda Bateman - Video
Bateman Horne Center Video

SMCI IOM Briefing in Washington, D.C. Full Coverage - Video
Carol Head of Solve ME/CFS, Dr. Ellen Wright Clayton and Morgan Fairchild at the SMCI IOM Briefing

Solve ME/CFS Video

Notable studies

 * 2017, Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria (Lily Chu), (Jane Norris), (Ian Valencia) & (Jose Montoya)
 * 2016, Chronic Fatigue Syndrome versus Systemic Exertion Intolerance Disease (Leonard Jason)

In popular culture
A February 2016 comic strip referred to Systemic Exertion Intolerance Disease and implied it is simply tiredness (see Blondie comic).

Learn more

 * 2015, Chronic fatigue syndrome gets yet another name
 * 2015, Systemic Exercise Intolerance Disease: What’s in a name?