Systemic Exertion Intolerance Disease

The diagnostic criteria currently recommended by the Centers for Disease Control is the Institute of Medicine criteria (2015) or sometimes the National Academy of Medicine criteria, as the IOM is now called the NAM. Systemic Exertion Intolerance Disease, or SEID, was the name initially proposed by the committee; however it has not been adopted as a new name for ME/CFS by US organizations; CDC and NIH both refer to the disease as ME/CFS when referring to the IOM critera.

The IOM criteria was first proposed and published by an Institute of Medicine committee on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in 2015, at the request of the CDC.

Symptoms

Core symptoms

• Decrease in functional capacity with fatigue that lasts six months or longer. People with ME/CFS have fatigue that is very different from just being tired. The fatigue of ME/CFS:
  • Can be severe.
  • Is not a result of unusually difficult activity.
  • Is not relieved by sleep or rest.
  • Was not a problem before becoming ill (not life-long).
• post-exertional malaise (PEM)
• unrefreshing sleep; and

either

• impaired memory or ability to concentrate

or

• orthostatic intolerance (symptoms that occur when standing upright)

Other Common Symptoms

Many people with ME/CFS also have other symptoms, such as:

• Pain not caused by injury: The type of pain, where it occurs, and how severe it is varies. The most common types of pain in ME/CFS are:
  • Muscle pain and aches
  • Joint pain without swelling or redness
  • Headaches, either new or worsening

Some people with ME/CFS may also have:

• Tender lymph nodes in their neck or armpits
• A sore throat that happens often
• Digestive issues, like irritable bowel syndrome
• Chills and night sweats
• Allergies and sensitivities to foods, odors, chemicals, light, or noise
• Muscle weakness
• Shortness of breath
• Irregular heartbeat

Notes

Orthostatic intolerance is also useful for a more severe presentation of the disease; symptom severity and other symptoms are outlined in the Institute of Medicine report.

Adults can be diagnosed at six months of illness and pediatric cases are diagnosed at three months.

Diagnostic criteria for clinicians

Diagnostic Algorithm

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.

Development

In 2014, the U.S. Department of Health and Human Services (HHS), the National Institutes of Health (NIH), the Agency for Healthcare Research and Quality (AHRQ), the Centers for Disease Control and Prevention (CDC), the Food and Drug Administration (FDA), and the Social Security Administration (SSA) 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 recommended 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. However, this name was not adopted by government organizations and not embraced by advocacy organizations.

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.

Criticism

The Institute of Medicine criteria was met with community criticisms, including the following:

• too few symptoms were required; in particular, nervous and immune system symptoms present for CCC and ICC criteria were absent
• unclear descriptions of post-exertional malaise
• absence of pain, which is listed as a "common symptom" but not part of the diagnostic criteria

Twisk (2017) stated that ME and CFS are different illnesses, with ME being a neuromuscular disease and CFS being a partially overlapping fatigue-based illness, and that it was not possible to replace both ME and CFS with a single diagnostic entity. Twisk also stated that SEID included some patients that did not meet either ME or CFS diagnostic criteria.

Clinicians guide

The Report Guide for Clinicians explains the core symptoms, additional symptoms, diagnostic criteria and more.

Centers for Disease Control and Prevention (CDC) website

IOM criteria information has been incorporated into the CDC's ME/CFS website under the tab Information for Healthcare Providers under the "Resources" heading.

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

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

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

Notable studies

• 2015, Chronic Fatigue Syndrome versus Systemic Exertion Intolerance Disease (Full text)
• 2015, Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease (Full text)
• 2016, Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward (Full text)
• 2016, Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility (Full text)
• 2017, Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria (Full text)

Letters and commentary

• 2017, An Accurate Diagnosis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome  requires strict Clinical Case definitions and Objective Test Methods (Full text)
• 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.
• 2018, Myalgic Encephalomyelitis, chronic fatigue syndrome, and Systemic Exertion Intolerance Disease: Three distinct clinical entities (Full text)

In popular culture

A February 2016 comic strip referred to SEID and implied it is simply tiredness. See: Blondie comic

See also

• Chronic fatigue syndrome
• ME/CFS
• Myalgic encephalomyelitis

• NIH Post-Infectious ME/CFS Study - SEID will be used in this study.
• Pediatric myalgic encephalomyelitis and chronic fatigue syndrome
• Prognosis for myalgic encephalomyelitis and chronic fatigue syndrome
• Severe and very severe ME

Generally accepted criteria for diagnosing ME/CFS and ME

• Canadian Consensus Criteria (CCC) A diagnosis of moderate and severe forms of ME/CFS are accurately made using this criterion. Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.
• International Consensus Criteria (ICC) This criterion will accurately diagnose myalgic encephalomyelitis (ME). There is no requirement that the individual have symptoms for a specified period of time for diagnosis, as opposed to CCC, Fukuda, and SEID, which all require 6 months in adults.
• Systemic Exertion Intolerance Disease (IOM) ME/CFS (IOM) is accurately diagnosed when the core symptoms are met. The Institute of Medicine report as a whole is a comprehensive review of the medical literature available at time of publication (2015). Adults can be diagnosed at 6 months while pediatric cases are diagnosed at three months.

Learn more

• 2015, Chronic fatigue syndrome gets yet another name
• 2015, Systemic Exercise Intolerance Disease: What’s in a name?
• 2018, Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome (Notes the IOM report's diagnostic criteria.)

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).

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).

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.

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.

National Institutes of Health (NIH) - A set of biomedical research institutes operated by the U.S. government, under the auspices of the Department of Health and Human Services.

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).

post-exertional malaise (PEM) - A notable exacerbation of symptoms brought on by small physical or cognitive exertions. PEM may be referred to as a "crash" or "collapse" and can last for days or weeks. Symptoms can include cognitive impairments, muscle pain, trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, and others.

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

Agency for Healthcare Research and Quality (AHRQ) - Agency for Healthcare Research and Quality is a United States government agency under the U.S. Department of Health and Human Services. Their mission is "to produce evidence to make health care safer, higher quality, more accessible, equitable, and affordable. A representative of the Agency for Healthcare Research and Quality sat on the (now disbanded) CFSAC committee as an Ex Officio Member.

Social Security Administration (SSA) - SSA is the United States government department for disability benefits, unemployment, and social security/welfare that handles SSD and SSI disability payments.

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.

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.

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.

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.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

International Consensus Criteria (ICC) - A set of diagnostic criteria, based on the Canadian Consensus Criteria, that argued for the abandonment of the term "chronic fatigue syndrome" and encouraged the sole use of the term "myalgic encephalomyelitis".

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."

limbic cortex Part of the brain (within the cerebral cortex) involved in emotion, memory and behavior. Part of the limbic system.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.