Systemic Exertion Intolerance Disease

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Systemic Exertion Intolerance Disease (SEID) was the new name proposed at the same time as the diagnostic criteria developed by the National Academy of Medicine (NAM) (formerly the Institute of Medicine, IOM) published on February 10, 2015. The report was titled Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, and is also referred to as the Institute of Medicine report.

The IOM diagnostic criteria requires chronic fatigue (CF); post-exertional malaise (PEM); unrefreshing sleep; and cognitive impairment and/or orthostatic intolerance (OI).[1] It is also useful for a more severe presentation of the disease; symptom severity and other symptoms are outlined in the Institute of Medicine report.[2]

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

Morgan Fairchild is an American actress of film and television. She was diagnosed with chronic fatigue syndrome (CFS) in 1989. On March 25, 2015, she gave a speech during the IOM briefing of the rollout of SEID where she says compared to others suffering with ME/CFS she has a mild case

Authors

Rosa age 25 in 1986 and mildly ill with ME/CFS. Rosa believes she then met the SEID criteria developed in 2015 and this is when she first read about PEM. She became worse over the years and in 2003 was diagnosed and disabled with chronic fatigue syndrome (CFS) which was the name for ME/CFS at the time. Rosa now meets the CCC criteria with PEM "option". ME/CFS onset was age 17 and fibromyalgia since puberty

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 (HHS), the National Institutes of Health (NIH), the Agency for Healthcare Research and Quality (AHRQ), the Centers for Disease Control & 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 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.[3]

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 CAN NOT tolerate exertion of any kind; physical, cognitive or emotional.[4] (Intolerance is well understood in the medical field in that there is a medical problem. Other diseases, such as gluten intolerance, is a serious medical condition; gluten CAN NOT be consumed.) Disease gave the self-explanatory label of being an organic biological disease.

Diagnostic criteria

Diagnostic Algorithm[1]

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.[5]

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 (CDC) ME/CFS website under the tab IOM 2015 Diagnostic Criteria.[6]

SEID vs Other criteria

The SEID criteria are the most symptom liberal of the valid disease definition criteria. The Canadian Consensus Criteria (CCC) are for ME/CFS, and International Consensus Criteria (ICC) are for ME.[7]

The IOM report calls for the "retirement" of the Oxford criteria for chronic fatigue syndrome (CFS).[8] The Fukuda criteria are also for CFS.

Comparison chart of the ICC and SEID: ICC compared to IOM (SEID).[9]

Criticism

The main criticisms are:

  • the missing of nervous system symptoms from diagnostic criteria, when ME/CFS is a neurological disease
  • the missing of immune system from diagnostic criteria
  • unclear and broad criterion of the main symptom of post-exertional malaise
  • absence of important symptoms like pain
  • missing exclusions, for example POTS
  • laboratory tests results are missing[10][11][12][13][14][15]

ME was the original name for CFS; the names are often used interchangeably or with the acronym ME/CFS.[16] The name SEID, although giving credence to the fact that patients are intolerant to exertion, does not capture the debilitating central nervous system (CNS) symptoms patients experience as the name ME does.

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.[12]

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)."[17]

The Institute of Medicine report

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness

Read the report


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

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

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. 1.01.1 "Diagnostic Algorithm for ME/CFS". nationalacademies.org. 2015. 
  2. "5". Read "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness" at NAP.edu. National Academies of Medicine. 2015. pp. 141–162. 
  3. "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness" (PDF). nationalacademies.org. p. 5. 
  4. Logan, Russell (Jan 3, 2015). "NIH/IOM 2015 Definition (SEID)". Shoutout about ME. Retrieved Sep 3, 2018. 
  5. "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - Redefining an Illness" (PDF). nationacademies.org. 2015. 
  6. "IOM 2015 Diagnostic Criteria | Diagnosis | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". www.cdc.gov. Jul 10, 2018. Retrieved Sep 3, 2018. 
  7. Chu, Lily; Norris, Jane L.; Valencia, Ian J.; Montoya, Jose G. (Mar 13, 2017). "Patients diagnosed with Myalgic encephalomyelitis/chronic fatigue syndrome also fit systemic exertion intolerance disease criteria". Fatigue: Biomedicine, Health & Behavior. 5 (2): 114–128. doi:10.1080/21641846.2017.1299079. ISSN 2164-1846. 
  8. Swift, Penny. "US NIH Report Calls for UK Definition of ME/CFS to be Scrapped". theargusreport.com. Retrieved Sep 3, 2018. 
  9. "International Consensus Criteria (ICC) vs Systemic Exertion Intolerance Disease (SEID)" (PDF). cloudfront.net. MEadvocacy.org. 
  10. 10.010.1 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 
  11. 11.011.1 Twisk, Frank N. M. (Jun 2018). "Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, and Systemic Exertion Intolerance Disease: Three Distinct Clinical Entities". Challenges. 9 (1): 19. doi:10.3390/challe9010019. Retrieved Sep 1, 2018. 
  12. 12.012.112.2 Twisk, Frank N. M. (Jun 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. 
  13. 13.013.1 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 
  14. 14.014.1 Jason, Leonard A.; Sunnquist, Madison; Kot, Bobby; Brown, Abigail (Jun 23, 2015). "Unintended Consequences of not Specifying Exclusionary Illnesses for Systemic Exertion Intolerance Disease". Diagnostics. 5 (2): 272–286. doi:10.3390/diagnostics5020272. 
  15. 15.015.1 Twisk, Frank N. M. (Feb 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. 
  16. Dellwo, Adrienne (Nov 24, 2018). "Myalgic Encephalomyelitis or Chronic Fatigue Syndrome". Verywell Health. Retrieved Nov 28, 2018. 
  17. "Information for Healthcare Providers | ME/CFS | CDC". www.cdc.gov. Jul 10, 2018. Retrieved Sep 3, 2018. 
  18. "SMCI IOM Briefing in Washington, D.C. Full Coverage". YouTube. SolveCFS. Mar 25, 2015. 
  19. Bateman, Lucinda (Mar 8, 2015). ""New Clinical Definitions for ME/CFS" Dr. Lucinda Bateman". YouTube. Bateman Horne Center. 
  20. Asprusten, Tarjei Tørre; Sulheim, Dag; Fagermoen, Even; Winger, Anette; Skovlund, Eva; Wyller, Vegard Bruun (Mar 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 5887832Freely accessible. PMID 29637195. 
  21. 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 
  22. 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 
  23. Alexander Miller, Courtney (Feb 9, 2016). "Positive Answers to Initial Questions re NIH Clinical Center Protocol - #MEAction". #MEAction. Retrieved Sep 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, A C 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 (Aug 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 3427890Freely accessible. 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). nationacademies.org. 
  27. Coghlan, Andy (Feb 10, 2015). "Chronic fatigue syndrome gets yet another name". New Scientist. Retrieved Sep 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 (Oct 16, 2018). "Diagnosis and Management of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome". YouTube. Unrest Film. 1:29. Part of the Unrest Continuing Education module. 

Systematic Exertion Intolerance Disease. A new term with new diagnostic criteria designed to replace chronic fatigue syndrome.Cite error: Closing </ref> missing for <ref> tag

Myalgic encephalomyelitis or chronic fatigue syndrome, often used when both illnesses are considered the same.

Myalgic encephalomyelitis or M.E. has different diagnostic criteria to chronic fatigue syndrome; neurological symptoms are required but fatigue is an optional symptom.<ref name="ICP2011primer">{{Citation

Accuracy is the "closeness of an observation to the true clinical state" (Sackett et al., 1986).[1]

The information provided at this site is not intended to diagnose or treat any illness.
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history.