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.

Authors

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.

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 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.

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.

Centers for Disease Control and Prevention (CDC) website

Note: The name Systemic Exertion Intolerance Disease (SEID) has not been adopted but the new diagnostic criteria have been incorporated into the Centers for Disease Control and Prevention's ME/CFS website "for informational purposes only" under the tab IOM 2015 Diagnostic Criteria.

SEID vs Other criteria

The SEID criteria are 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.

Clinicians guide

The Report Guide for Clinicians explains the core symptoms, additional symptoms, diagnostic criteria and more. (Feb 10, 2015)

Centers for Disease Control and Prevention (CDC) website

Note: This clinicians guide has been incorporated into the CDC's ME/CFS website under the tab Information for Healthcare Providers under the "Resources" heading with a page disclaimer: "The findings and conclusions in these documents are those of the author(s) and do not necessarily represent the official position of the Centers for Disease Control and Prevention (CDC)."

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
  • 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

Videos

• Beyond the Data – Chronic Fatigue Syndrome: Advancing Research and Clinical Education

CDC Posted Video - Dr. John Iskander of CDC interviews Dr. Anthony Komaroff (Feb 17, 2016)

• SMCI IOM Briefing in Washington, D.C. Full Coverage

Carol Head of Solve ME/CFS, Dr. Ellen Wright Clayton and Morgan Fairchild at the SMCI IOM Briefing (Mar 25, 2015)

• New Clinical Definitions for ME/CFS - Dr. Lucinda Bateman

Dr. Lucinda Bateman of Bateman Horne Center discusses. (Mar 8, 2015)

Notable studies

• 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

Learn more

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

See also

• NIH Post-Infectious ME/CFS Study - SEID will be used in this study.

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

systemic exertion intolerance disease (SEID) - A term for ME/CFS that aims to avoid the stigma associated with the term "chronic fatigue syndrome", while emphasizing the defining characteristic of post-exertional malaise (PEM). SEID was defined as part of the diagnostic criteria put together by the Institute of Medicine (IOM) report of 10 February 2015.

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

cognition Thought processes, including attention, reasoning, and memory.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

Centers for Disease Control and Prevention (CDC) - The Centers for Disease Control and Prevention is a U.S. government agency dedicated to epidemiology and public health. It operates under the auspices of the Department of Health and Human Services.

Institute of Medicine report (IOM report) - A report that was commissioned by the U.S. government and was published by the Institute of Medicine on February 10, 2015. The report was titled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" and proposed the term Systemic Exertion Intolerance Disease (SEID). Among its key findings were that "This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort." The report further stated "Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome."

National Academy of Medicine (NAM) - An American non-profit, non-governmental organization which provides expert advice to governmental agencies on issues relating to biomedical science, medicine and health. Formerly known as the Institute of Medicine (IOM).

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.