Systemic Exertion Intolerance Disease

From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history

The diagnostic criteria currently recommended by the Centers for Disease Control is the Institute of Medicine criteria (2015)[1] 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.[1][2]

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.[3]

Symptoms

Core symptoms

either

or

Other Common Symptoms

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

Some people with ME/CFS may also have:

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.[8]

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

Diagnostic criteria for clinicians

Diagnostic Algorithm[7]

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.[9][10]

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.[3] However, this name was not adopted by government organizations and not embraced by advocacy organizations.[1][2]

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.[11]

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.[12]

The Institute of Medicine report

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

Read the report

Videos

CDC Posted Video - Dr. John Iskander of CDC interviews Dr. Anthony Komaroff (Feb 17, 2016)
Carol Head of Solve ME/CFS, Dr. Ellen Wright Clayton and Morgan Fairchild
Dr. Lucinda Bateman of Bateman Horne Center discusses. (Mar 8, 2015)

Notable studies

  • 2015, Chronic Fatigue Syndrome versus Systemic Exertion Intolerance Disease[15] (Full text)
  • 2015, Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease[16] (Full text)
  • 2016, Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward[17] (Full text)
  • 2016, Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility[18] (Full text)
  • 2017, Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria[19] (Full text)

Letters and commentary

In popular culture

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

See also

Generally accepted criteria for diagnosing ME/CFS and ME

Learn more

References

  1. 1.0 1.1 1.2 CDC (May 22, 2024). "IOM 2015 Diagnostic Criteria". Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Retrieved June 18, 2024.
  2. 2.0 2.1 "ME/CFS Research". National Institutes of Health (NIH). September 29, 2016. Retrieved June 18, 2024.
  3. 3.0 3.1 "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness" (PDF). nap.edu. p. 5. Archived from the original (PDF) on June 15, 2017.
  4. 4.0 4.1 "Symptoms | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 27, 2021. Retrieved January 3, 2022.
  5. IOM (Institute of Medicine); Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (2015). "Proposed Diagnostic Criteria for ME/CFS". Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. Washington, D.C.: National Academies Press. p. 210. ISBN 978-0-309-31689-7. Retrieved January 3, 2022.
  6. "IOM 2015 Diagnostic Criteria | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 27, 2021. Retrieved February 25, 2021.
  7. 7.0 7.1 Institute of Medicine (2015). "Diagnostic Algorithm for ME/CFS". nap.edu.
  8. "5". Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness. National Academies of Medicine. 2015. pp. 141–162.
  9. "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness" (PDF). nap.edu. 2015. Archived from the original (PDF) on June 15, 2017.
  10. "New diagnostic criteria | IOM 2015 Diagnostic Criteria | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome". Centers for Disease Control and Prevention. January 27, 2021. Retrieved January 3, 2022.
  11. 11.0 11.1 Twisk, Frank N.M. (June 27, 2017). "An Accurate Diagnosis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome requires strict Clinical Case definitions and Objective Test Methods" (PDF). Journal of Medical Diagnostic Methods. 6 (3). doi:10.4172/2168-9784.1000249 – via l.
  12. "Information for Healthcare Providers | ME/CFS | CDC". Centers for Disease Control and Prevention. July 10, 2018. Retrieved September 3, 2018.
  13. "SMCI IOM Briefing in Washington, D.C. Full Coverage". YouTube. SolveCFS. March 25, 2015.
  14. Bateman, Lucinda (March 8, 2015). ""New Clinical Definitions for ME/CFS" Dr. Lucinda Bateman". YouTube. Bateman Horne Center.
  15. 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
  16. Jason, Leonard A.; Sunnquist, Madison; Kot, Bobby; Brown, Abigail (June 23, 2015). "Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease". Diagnostics. 5 (2): 272–286. doi:10.3390/diagnostics5020272. PMC 4666441. PMID 26854153.
  17. Twisk, Frank N.M. (February 6, 2016). "Replacing Myalgic Encephalomyelitis and Chronic Fatigue Syndrome with Systemic Exercise Intolerance Disease Is Not the Way forward". Diagnostics. 6 (1): 10. doi:10.3390/diagnostics6010010. PMC 4808825. PMID 26861399.
  18. Asprusten, Tarjei Tørre; Sulheim, Dag; Fagermoen, Even; Winger, Anette; Skovlund, Eva; Wyller, Vegard Bruun (March 16, 2018). "Systemic exertion intolerance disease diagnostic criteria applied on an adolescent chronic fatigue syndrome cohort: evaluation of subgroup differences and prognostic utility". BMJ Paediatrics Open. 2 (1). doi:10.1136/bmjpo-2017-000233. ISSN 2399-9772. PMC 5887832. PMID 29637195.
  19. 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
  20. 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
  21. 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
  22. Twisk, Frank N.M. (June 2018). "Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Systemic Exertion Intolerance Disease: Three Distinct Clinical Entities". Challenges. 9 (1): 19. doi:10.3390/challe9010019. Retrieved September 1, 2018.
  23. Alexander Miller, Courtney (February 9, 2016). "Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction". #MEAction. Retrieved September 3, 2018.
  24. Carruthers, Bruce M.; Jain, Anil Kumar; De Meirleir, Kenny L.; Peterson, Daniel L.; Klimas, Nancy G.; Lerner, A. Martin; Bested, Alison C.; Flor-Henry, Pierre; Joshi, Pradip; Powles, AC Peter; Sherkey, Jeffrey A.; van de Sande, Marjorie I. (2003), "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols" (PDF), Journal of Chronic Fatigue Syndrome, 11 (2): 7–115, doi:10.1300/J092v11n01_02
  25. Carruthers, Bruce M.; van de Sande, Marjorie I.; De Meirleir, Kenny L.; Klimas, Nancy G.; Broderick, Gordon; Mitchell, Terry; Staines, Donald; Powles, A.C. Peter; Speight, Nigel; Vallings, Rosamund; Bateman, Lucinda; Baumgarten-Austrheim, Barbara; Bell, David; Carlo-Stella, Nicoletta; Chia, John; Darragh, Austin; Jo, Daehyun; Lewis, Donald; Light, Alan; Marshall-Gradisnik, Sonya; Mena, Ismael; Mikovits, Judy; Miwa, Kunihisa; Murovska, Modra; Pall, Martin; Stevens, Staci (August 22, 2011). "Myalgic encephalomyelitis: International Consensus Criteria". Journal of Internal Medicine. 270 (4): 327–338. doi:10.1111/j.1365-2796.2011.02428.x. ISSN 0954-6820. PMC 3427890. PMID 21777306.
  26. Clayton, Ellen Wright; Alegria, Margarita; Bateman, Lucinda; Chu, Lily; Cleeland, Charles; Davis, Ronald; Diamond, Betty; Ganiats, Theodore; Keller, Betsy; Klimas, Nancy; Lerner, A Martin; Mulrow, Cynthia; Natelson, Benjamin; Rowe, Peter; Shelanski, Michael (2015). "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness" (PDF). nap.edu.
  27. Coghlan, Andy (February 10, 2015). "Chronic fatigue syndrome gets yet another name". New Scientist. Retrieved September 3, 2018.
  28. Sen, Mahadev Singh; Sahoo, Swapnajeet; Aggarwal, Shivali; Singh, Shubh Mohan (2016). "Systemic exercise intolerance disease: What's in a name?". Asian Journal of Psychiatry. 22: 157–158. doi:10.1016/j.ajp.2016.06.003. ISSN 1876-2018.
  29. Kaufman, David (October 16, 2018). "Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome". YouTube. Unrest Film. 1:29. Part of the Unrest Continuing Education module.