Post-exertional malaise explained

Post-exertional malaise
Treatment:Symptomatic
Causes:Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Long COVID
Symptoms:Worsening of symptoms after ordinary activity
Synonym:Post-exertional symptom exacerbation (PESE)
Postexertional malaise (PEM)
Post-exertional neuroimmune exhaustion (PENE)

Post-exertional malaise (PEM), sometimes referred to as post-exertional symptom exacerbation (PESE)[1] or post-exertional neuroimmune exhaustion (PENE),[2] is a worsening of symptoms that occurs after minimal exertion. It is the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and common in long COVID and fibromyalgia.[3] PEM is often severe enough to be disabling, and is triggered by ordinary activities that healthy people tolerate. Typically, it begins 12–48 hours after the activity that triggers it, and lasts for days, but this is highly variable and may persist much longer.[4] [5] [6] Management of PEM is symptom-based, and patients are recommended to pace their activities to avoid triggering PEM.

History and terminology

One of the first definitions of ME/CFS, the Holmes Criteria published in 1988, does not use the term post-exertional malaise but describes prolonged fatigue after exercise as a symptom.[7] The term was later used in a 1991 review summarizing the symptoms of ME/CFS. Afterwards, the Canadian Consensus Criteria from 2003[8] and the International Consensus Criteria from 2011[9] used the term, as well as later definitions.

The 2021 NICE committe stated they consider the term PEM outdated, as it may give the impression of just a "vague discomfort", and argued that the term post-exertional symptom exacerbation better captures the symptom. Nonetheless, they decided to continue using PEM as it is the more familiar term.[10]

Description

Post-exertional malaise involves an exacerbation of symptoms, or the appearance of new symptoms, which are often severe enough to impact a person's functioning.[11] While fatigue is often prominent, it is "more than fatigue following a stressor". Other symptoms that may occur during PEM include cognitive impairment, flu-like symptoms, pain, weakness, and trouble sleeping. Though typically cast as a worsening of existing symptoms, patients may experience some symptoms exclusively during PEM. Patients often describe PEM as a "crash", "relapse", or "setback".

PEM is triggered by "minimal" physical or mental activities that were previously tolerated, and that healthy people tolerate, like attending a social event, grocery shopping, or even taking a shower. Sensory overload, emotional distress, injury, sleep deprivation, infections, and spending too long standing or sitting up are other potential triggers. The resulting symptoms are disproportionate to the triggering activity and are often debilitating, potentially rendering someone housebound or bedbound until they recover.[12] [13]

The course of a crash is highly variable. Symptoms typically begin 12–48 hours after the triggering activity, but may be immediate, or delayed up to 7 days. PEM lasts "usually a day or longer", but can span hours, days, weeks, or months. The level of activity that triggers PEM, as well as the symptoms, vary from person to person, and within individuals over time. Due to this variability, affected people may be unable to predict what will trigger it. This variable, relapsing-remitting pattern can cause one's abilities to fluctuate from one day to the next.

Diagnosis

PEM is a hallmark symptom of ME/CFS and is common in long COVID.[14] [15] [16]

However, its presence can be difficult to assess because patients and doctors may be unfamiliar with it. Hence, the WHO recommends that clinicians explicitly ask long COVID patients whether symptoms worsen with activity.

The 2-day Cardiopulmonary Exercise Test (CPET) may aid in documenting PEM, showing apparent abnormalities in the body's response to exercise.[17] Still, more research on developing a diagnostic test is needed.

Epidemiology

PEM is considered a cardinal symptom of ME/CFS by modern diagnostic criteria: the International Consensus Criteria, the National Academy of Medicine criteria,[18] [19] and NICE's definition of ME/CFS all require it. The Canadian Consensus Criteria require "post exertional malaise and/or [post exertional] fatigue" instead.[20] [21] [22] [23] On the other hand, the older Oxford Criteria lack any mention of PEM,[24] and the Fukuda Criteria consider it optional. Depending on the definition of ME/CFS used, PEM is present in 60 to 100% of ME/CFS patients.

A majority of people with long COVID experience post-exertional malaise as well.

Management

See main article: articles and Chronic fatigue syndrome treatment.

There is no treatment or cure for PEM. Pacing, a management strategy in which someone plans their activities to stay within their limits, may help avoid triggering PEM.[25]

Physical therapy for people with long COVID must be modified to avoid triggering PEM in susceptible patients.[26]

Notes and References

  1. Book: Clinical management of COVID-19 Living Guideline . January 13, 2023 . . 113–4 . January 14, 2023 . May 22, 2023 . https://web.archive.org/web/20230522054038/https://apps.who.int/iris/rest/bitstreams/1487600/retrieve . live .
  2. Twisk . Frank . December 20, 2018 . free. Myalgic Encephalomyelitis or What? The International Consensus Criteria . Diagnostics . en . 9 . 1 . 1 . 10.3390/diagnostics9010001 . 2075-4418 . 6468846 . 30577429 .
  3. Pain-Related Post-Exertional Malaise in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: A Systematic Review and Three-Level Meta-Analysis. 10.1093/pm/pnab308. February 11, 2024. Pain Medicine. 2022 . May 21, 2023. https://web.archive.org/web/20230521195848/https://academic.oup.com/painmedicine/article/23/6/1144/6404604. live . 23 . 6 . 1144–1157 . 34668532 . Barhorst EE, Boruch AE, Cook DB, Lindheimer JB . free.
  4. Web site: July 14, 2017 . Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Symptoms . September 23, 2017 . Centers for Disease Control and Prevention . U.S. Department of Health & Human Services . August 22, 2020 . https://web.archive.org/web/20200822180337/https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html . live .
  5. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management - Recommendations. NICE guideline NG206. October 29, 2021. NICE. Terms: Post-exertional malaise. https://www.nice.org.uk/guidance/ng206/chapter/recommendations#post-exertional-malaise. May 12, 2022. December 29, 2021. https://web.archive.org/web/20211229193427/https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#post-exertional-malaise. live.
  6. Web site: 2015 . Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness . May 12, 2022 . National Academy of Medicine . 78–86 . January 20, 2017 . https://web.archive.org/web/20170120175658/https://www.ncbi.nlm.nih.gov/books/NBK274235/pdf/Bookshelf_NBK274235.pdf . live .
  7. Holmes . Gary P. . March 1, 1988 . Chronic Fatigue Syndrome: A Working Case Definition . Annals of Internal Medicine . en . 108 . 3 . 387–389 . 10.7326/0003-4819-108-3-387 . 2829679 . 0003-4819.
  8. 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. . January 2003 . Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols . Journal of Chronic Fatigue Syndrome . en . 11 . 1 . 7–115 . 10.1300/J092v11n01_02 . 1057-3321. subscription .
  9. Carruthers . B. M. . van de Sande . M. I. . De Meirleir . K. L. . Klimas . N. G. . Broderick . G. . Mitchell . T. . Staines . D. . Powles . A. C. P. . Speight . N. . Vallings . R. . Bateman . L. . Baumgarten-Austrheim . B. . Bell . D. S. . Carlo-Stella . N. . Chia . J. . October 2011 . Myalgic encephalomyelitis: International Consensus Criteria . Journal of Internal Medicine . en . 270 . 4 . 327–338 . 10.1111/j.1365-2796.2011.02428.x . 0954-6820 . 3427890 . 21777306.
  10. Book: National Guideline Centre (UK) . Identifying and diagnosing ME/CFS: Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management: Evidence review D . 2021 . National Institute for Health and Care Excellence (NICE) . 978-1-4731-4221-3 . NICE Evidence Reviews Collection . London . 35438857 . 23 September 2023 . https://web.archive.org/web/20240219120717/https://www.ncbi.nlm.nih.gov/books/NBK579530/ . 19 February 2024 . live.
  11. Grach . Stephanie L. . Seltzer . Jaime . Chon . Tony Y. . Ganesh . Ravindra . October 2023 . Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome . Mayo Clinic Proceedings . en . 98 . 10 . 1544–1551 . 10.1016/j.mayocp.2023.07.032. 37793728 . 263665180 . free .
  12. Carruthers . B. M. . van de Sande . M. I. . De Meirleir . K. L. . Klimas . N. G. . Broderick . G. . Mitchell . T. . Staines . D. . Powles . A. C. P. . Speight . N. . Vallings . R. . Bateman . L. . Baumgarten-Austrheim . B. . Bell . D. S. . Carlo-Stella . N. . Chia . J. . October 2011 . Myalgic encephalomyelitis: International Consensus Criteria . . 270 . 4 . 327–338 . 10.1111/j.1365-2796.2011.02428.x . 3427890 . 21777306 . free . Darragh . A. . Jo . D. . Lewis . D. . Light . A. R. . Marshall-Gradisbik . S. . Mena . I. . Mikovits . J. A. . Miwa . K. . Murovska . M. . Pall . M. L. . Stevens . S..
  13. https://www.nice.org.uk/guidance/ng206/chapter/recommendations#suspecting-mecfs . Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management – Recommendations . October 29, 2021 . NICE guideline NG206 . NICE . 1.2 Suspecting ME/CFS . May 12, 2022 . December 29, 2021 . https://web.archive.org/web/20211229193427/https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#suspecting-mecfs . live .
  14. Web site: November 11, 2022 . Information for Healthcare Providers ME/CFS CDC . June 7, 2023 . www.cdc.gov . en-us . August 9, 2020 . https://web.archive.org/web/20200809172726/https://www.cdc.gov/me-cfs/healthcare-providers/index.html . live .
  15. Davis . Hannah E. . McCorkell . Lisa . Vogel . Julia Moore . Topol . Eric J. . January 13, 2023 . Long COVID: major findings, mechanisms and recommendations . Nature Reviews Microbiology . 21 . 3 . en . 133–146 . 10.1038/s41579-022-00846-2 . 1740-1534 . 9839201 . 36639608 .
  16. Web site: September 1, 2022 . Long COVID or Post-COVID Conditions . Centers for Disease Control and Prevention . July 3, 2022 . January 14, 2022 . https://web.archive.org/web/20220114190825/https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html . live .
  17. Eun-Jin . Lim . Eun-Bum . Kang . Eun-Su . Jang . Chang-Gue . Son . The Prospects of the Two-Day Cardiopulmonary Exercise Test (CPET) in ME/CFS Patients: A Meta-Analysis . Journal of Clinical Medicine . 2020 . 9 . 12 . 4040 . J Clin Med. . 10.3390/jcm9124040 . 33327624 . 7765094 . free .
  18. Web site: November 8, 2018 . IOM 2015 Diagnostic Criteria Diagnosis Healthcare Providers Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) CDC . March 8, 2019 . www.cdc.gov . en-us . March 8, 2019 . https://web.archive.org/web/20190308221543/https://www.cdc.gov/me-cfs/healthcare-providers/diagnosis/iom-2015-diagnostic-criteria.html . live .
  19. Web site: January 27, 2021 . Symptoms of ME/CFS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) . CDC . September 23, 2017 . August 22, 2020 . https://web.archive.org/web/20200822180337/https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html . live .
  20. Myhill . Sarah . Booth . Norman E . McLaren-Howard . John . 2009 . Chronic fatigue syndrome and mitochondrial dysfunction . Int J Clin Exp Med . 2 . 1 . 1–16 . 2680051 . 19436827 . March 8, 2019 . July 11, 2019 . https://web.archive.org/web/20190711111956/http://www.ijcem.com/files/IJCEM812001.pdf . live .
  21. Web site: Carruthers . Bruce M . van de Sande . Marjorie I. . 2005 . Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Clinical Case Definition and Guidelines for Medical Practitioners . sacfs.asn.au . 8 . There is an inappropriate loss of physical and mental stamina, rapid muscular and cognitive fatigability, post exertional malaise and/or fatigue and/or pain and a tendency for other associated symptoms within the patient's cluster of symptoms to worsen. . March 8, 2019 . March 4, 2019 . https://web.archive.org/web/20190304122912/http://sacfs.asn.au/download/consensus_overview_me_cfs.pdf . live .
  22. Web site: 2015 . Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts . nap.edu . 2 . March 8, 2019 . March 27, 2019 . https://web.archive.org/web/20190327085836/https://www.nap.edu/resource/19012/MECFS_KeyFacts.pdf . live .
  23. Web site: Wright Clayton . Ellen . Alegria . Margarita . Bateman . Lucinda . Chu . Lily . Cleeland . Charles . Davis . Ronald . Diamond . Betty . Ganlats . Theodore . Keller . Betsy . 2015 . Nancy Klimas, A. Martin Lerner, Cynthia Mulrow, Benjamin Natelson, Peter Rowe, Michael Shelanski . Beyond Myalgic Encephalomyelits/Chronic Fatigue Syndrome: Redefining an Illness (Report Guide for Clinicians) . nationalacademies.org . National Academy of Medicine (Institutes of Medicine) . 7 . March 8, 2019 . September 29, 2018 . https://web.archive.org/web/20180929140652/http://www.nationalacademies.org/hmd/~/media/Files/Report%20Files/2015/MECFS/MECFScliniciansguide.pdf . live .
  24. Sharpe . Michael . February 1991 . A report--chronic fatigue syndrome: guidelines for research. . Journal of the Royal Society of Medicine . 84 . 2 . 118–121 . 10.1177/014107689108400224 . 1293107 . 1999813.
  25. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management – Recommendations. NICE guideline NG206. October 29, 2021. NICE. 1.11 Managing ME/CFS. https://www.nice.org.uk/guidance/ng206/chapter/recommendations#managing-mecfs. July 17, 2022. December 29, 2021. https://web.archive.org/web/20211229193427/https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#managing-mecfs. live.
  26. Book: Clinical management of COVID-19 Living Guideline . January 13, 2023 . . 109 . January 14, 2023 . May 22, 2023 . https://web.archive.org/web/20230522054038/https://apps.who.int/iris/rest/bitstreams/1487600/retrieve . live .

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