Systemic Exertion Intolerance Disease
Systemic Exertion Intolerance Disease (SEID) is the name and diagnostic criteria developed by the Institute of Medicine (IOM) and published on February 10, 2015: Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness is also referred to as the Institute of Medicine report.
The committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) 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.
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 and acronym SEID is meant 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.
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
At least one of the two following manifestations is also required:
1. Cognitive impairment* or
- * 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.
SEID vs Other criteria
The SEID criteria is the most symptom liberal of the valid disease definition criteria. Other ME/CFS disease definition criteria include Fukuda criteria, Canadian Consensus Criteria, and International Consensus Criteria. The IOM report calls for the "retirement" of the Oxford criteria.
The Report Guide for Clinicians explains core symptoms, additional symptoms, diagnostic criteria and more. (Feb 10, 2015)
The 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
- 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
- Carol Head of Solve ME/CFS, Dr. Ellen Wright Clayton and Morgan Fairchild at the SMCI IOM Briefing (Mar 25, 2015)
- 2017, Article commentary - Differences of opinion on systemic exercise intolerance disease are not ‘mistakes’: a rejoinder to Jason Sunnquist, Gleason and Fox
- 2017, Article commentary - Mistaken conclusions about systemic exercise intolerance disease being comparable to research case definitions of CFS: A rebuttal to Chu et al.
- 2017, Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria
- 2015, Chronic Fatigue Syndrome versus Systemic Exertion Intolerance Disease
In popular culture
A February 2016 comic strip referred to Systemic Exertion Intolerance Disease and implied it is simply tiredness. See: Blondie comic
- 2015, Chronic fatigue syndrome gets yet another name
- 2015, Systemic Exercise Intolerance Disease: What’s in a name?
- "See Pg. 5 Par. 2 IOM Clinicians Guide"
- "Shout Out About ME: NIH/IOM 2015 Definition 'About That Name'"
- "IOM SEID Clinicians Report Pg. 7"
- Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria - Taylor and Francis Online - March 13, 2017
- US NIH Report Calls for UK Definition of ME/CFS to be Scrapped - The Argus Report By: Penny Swift
- Chu, Lily; Valencia, Ian J.; Montoya, Jose G. (2017), "Differences of opinion on systemic exercise intolerance disease are not ‘mistakes’: a rejoinder to Jason Sunnquist, Gleason and Fox", Fatigue: Biomedicine, Health & Behavior, doi:10.1080/21641846.2017.1362750
- Jason, Leonard A.; Sunnquist, Madison; Gleason, Kristen; Fox, Pamela (2017), "Mistaken conclusions about systemic exercise intolerance disease being comparable to research case definitions of CFS: A rebuttal to Chu et al.", Fatigue: Biomedicine, Health & Behavior, doi:10.1080/21641846.2017.1362780
- Chu, Lily; Norris, Jane; Valencia, Ian J.; Montoya, Jose G. (2017), "Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria", Fatigue: Biomedicine, Health & Behavior, 5, doi:10.1080/21641846.2017.1299079
- Jason, L.A.; Sunnquist, M.; Brown, A.; Newton, J.L.; Strand, E.B.; Vernon, S.D. (2015), "Chronic fatigue syndrome versus systemic exertion intolerance disease", Fatigue: Biomedicine, Health & Behavior, 3 (3): 127-141, doi:10.1080/21641846.2015.1051291
- Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction - Comments - "Polly" Thread