Post-exertional malaise

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Post-exertional malaise
Other namesPost-exertional symptom exacerbation (PESE)
Postexertional malaise (PEM)
Post-exertional neuroimmune exhaustion (PENE)
Triggers of Post-exertional malaise.svg
Chart of physical, cognitive, and emotional activities that may trigger PEM
Symptoms Worsening of symptoms after ordinary activity
Causes Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Long COVID [ citation needed ]
TreatmentSymptomatic

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] [1] 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.

Contents

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The 2021 NICE committee stated they consider the term PEM outdated, as it may give the impression of just a "vague discomfort", and argued that the term post-exertional symptom exacerbation better captures the symptom.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] : 49 

Description

Typical timeframes of post-exertional malaise after normal daily activities, 2020 Timeframe of PEM from daily activities.jpg
Typical timeframes of post-exertional malaise after normal daily activities, 2020
Severe symptoms triggered by a 2-day CPET in people with ME/CFS, 2023 Post-exertional malaise after 2-day CPET.jpg
Severe symptoms triggered by a 2-day CPET in people with ME/CFS, 2023

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". [6] Other symptoms that may occur during PEM include cognitive impairment, flu-like symptoms, pain, weakness, and trouble sleeping. [6] [4] Though typically cast as a worsening of existing symptoms, patients may experience some symptoms exclusively during PEM. [6] Patients often describe PEM as a "crash", "relapse", or "setback". [6]

PEM is triggered by "minimal" [5] 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. [4] Sensory overload, [11] emotional distress, injury, sleep deprivation, infections, and spending too long standing or sitting up are other potential triggers. [6] The resulting symptoms are disproportionate to the triggering activity and are often debilitating, potentially rendering someone housebound or bedbound until they recover. [12] [6] [13] [4]

The course of a crash is highly variable. Symptoms typically begin 12–48 hours after the triggering activity, [5] but may be immediate, or delayed up to 7 days. [6] PEM lasts "usually a day or longer", [12] but can span hours, days, weeks, or months. [6] The level of activity that triggers PEM, as well as the symptoms, vary from person to person, and within individuals over time. [6] Due to this variability, affected people may be unable to predict what will trigger it. [4] This variable, relapsing-remitting pattern can cause one's abilities to fluctuate from one day to the next. [1]

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. [1] [15] Hence, the WHO recommends that clinicians explicitly ask long COVID patients whether symptoms worsen with activity. [1]

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, [4] [12] the National Academy of Medicine criteria, [18] [19] and NICE's definition of ME/CFS [13] all require it. The Canadian Consensus Criteria require "post exertional malaise and/or [post exertional] fatigue" instead. [20] [21] [22] [18] [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. [6]

A majority of people with long COVID experience post-exertional malaise as well. [15]

Management

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]

Related Research Articles

<span class="mw-page-title-main">ME Association</span> UK charitable organization

The ME Association is a UK health charitable organization that provides information, advocacy, and services to persons and families affected by ME/CFS, and raises funds for research into ME/CFS. It has been reported to be one of the two largest UK charities for ME/CFS.

<span class="mw-page-title-main">History of ME/CFS</span> Aspect of medical history

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has a long history with an evolution in medical understanding, diagnoses and social perceptions.

Management of ME/CFS focuses on symptoms management, as no treatments that address the root cause of the illness are available. Pacing, or regulating one's activities to avoid triggering worse symptoms, is the most common management strategy for post-exertional malaise. Clinical management varies widely, with many patients receiving combinations of therapies.

<span class="mw-page-title-main">Controversies related to ME/CFS</span> Controversies and issues related to ME/CFS

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an illness with a history of controversy. Although it is classified as an organic disease by a majority of researchers, it was historically assumed to be psychosocial, an opinion still held among many physicians. The pathophysiology of ME/CFS remains unclear, there exist many competing diagnostic criteria, and some proposed treatments are controversial. There is a lack of education and accurate information about the condition among a significant number of medical practitioners, which has led to substantiated accusations of patient neglect and harm.

<span class="mw-page-title-main">Clinical descriptions of ME/CFS</span> Case definitions of the illness

Clinical descriptions of ME/CFS vary. Different groups have produced sets of diagnostic criteria that share many similarities. The biggest differences between criteria are whether post-exertional malaise (PEM) is required, and the number of symptoms needed.

The Lightning Process (LP) is a three-day personal training programme developed and trademarked by British osteopath Phil Parker. It makes unsubstantiated claims to be beneficial for various conditions, including ME/CFS, depression and chronic pain.

Graded exercise therapy (GET) is a programme of physical activity that starts very slowly and gradually increases over time, intended as a treatment for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Most public health bodies, including the CDC and NICE, consider it ineffective, and its safety is disputed. However, GET still enjoys support among a minority of clinicians and organizations.

David Sheffield Bell is an American physician who has done extensive research on the clinical aspects of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). He has also conducted evaluations and research in pediatric ME/CFS and written numerous articles about the condition.

Daniel Peterson is an American physician in private practice in the state of Nevada, and has been described as a "pioneer" in the treatment of Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). He graduated from the University of Rochester School of Medicine, Rochester, New York, in 1976 and was an intern and resident at the University of Utah Medical Center from 1976 to 1979. In 1979, he became a diplomate of the American Board of Internal Medicine. He is president of Sierra Internal Medicine of Incline Village, established in 1981.

<span class="mw-page-title-main">Myalgic encephalomyelitis/chronic fatigue syndrome</span> Chronic medical condition

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling chronic illness. People with ME/CFS experience profound fatigue that does not go away with rest, sleep issues, and problems with memory or concentration. Further common symptoms include dizziness, nausea and pain. The hallmark symptom is a worsening of the illness which starts hours to days after minor physical or mental activity. This "crash" can last from hours or days to several months.

Rosamund Vallings is a medical doctor, known as one of the leading authorities on Chronic Fatigue Syndrome (ME/CFS) in New Zealand.

Idiopathic chronic fatigue (ICF) or chronic idiopathic fatigue or insufficient/idiopathic fatigue is a term used for cases of unexplained fatigue that have lasted at least six consecutive months and which do not meet the criteria for myalgic encephalomyelitis/chronic fatigue syndrome. Such fatigue is widely understood to have a profound effect on the lives of patients who experience it.

Long COVID or long-haul COVID is a group of health problems persisting or developing after an initial period of COVID-19 infection. Symptoms can last weeks, months or years and are often debilitating. The World Health Organization defines long COVID as starting three months after the initial COVID-19 infection, but other agencies define it as starting at four weeks after the initial infection.

<span class="mw-page-title-main">DecodeME</span> Genetic study on ME/CFS

DecodeME is an ongoing genome-wide association study searching for genetic risk factors for ME/CFS. With a planned recruitment of 25,000 patients, it is expected to be the largest such study to date. Recruitment closed on 15 November 2023 and results are expected in 2025.

<span class="mw-page-title-main">2-day CPET</span> Medical test for post-exertional malaise

A 2-day CPET is a cardiopulmonary exercise test given on two successive days to measure the effect of post-exertional malaise (PEM) on a patient's ability to exercise. PEM is a cardinal symptom of myalgic encephalomyelitis/chronic fatigue syndrome and is common in long COVID as well.

Post-acute infection syndromes (PAISs) or post-infectious syndromes are medical conditions characterized by symptoms attributed to a prior infection. While it is commonly assumed that people either recover or die from infections, long-term symptoms—or sequelae—are a possible outcome as well. Examples include long COVID, Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and post-Ebola virus syndrome. Common symptoms include post-exertional malaise (PEM), severe fatigue, neurocognitive symptoms, flu-like symptoms, and pain. The pathology of most of these conditions is not understood and management is generally symptomatic.

Andrew Melvin Ramsay (1901–1990) was a British physician, who is known for his research and advocacy on myalgic encephalomyelitis (ME), a chronic disease causing muscle weakness and cognitive dysfunction. Ramsay worked as a consultant at the Royal Free Hospital in London during a mysterious 1955 disease outbreak of what later became known as ME. He studied the disease and similar outbreaks elsewhere. Work by Ramsay showed that although ME seldom caused death, the disease could be highly disabling.

Carmen Scheibenbogen is a German immunologist who is the acting director of the Institute for Medical Immunology of the Charité university hospital in Berlin. She specialises in hematology, oncology and immunology. She leads the Outpatient Clinic for Immunodeficiency and the Fatigue Centre at the Charité hospital. She is one of the few doctors specialised in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in Germany, and also researches long COVID.

The PACE trial was a large and controversial trial which compared the effects of cognitive behavioural therapy (CBT), graded exercise therapy (GET), adaptive pacing therapy, and specialist medical care for people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

Chronotropic incompetence (CI) is the inability of heart rate to increase as expected in response to exercise. The condition can be defined in different ways and occurs in various diseases. Sufferers have a higher risk of cardiovascular disease and early death.

References

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  3. ↑ Barhorst EE, Boruch AE, Cook DB, Lindheimer JB (2022). "Pain-Related Post-Exertional Malaise in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: A Systematic Review and Three-Level Meta-Analysis". Pain Medicine. 23 (6): 1144–1157. doi: 10.1093/pm/pnab308 . PMID   34668532. Archived from the original on May 21, 2023. Retrieved February 11, 2024.
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  10. ↑ National Guideline Centre (UK) (2021). Identifying and diagnosing ME/CFS: Myalgic encephalomyelitis (or encephalopathy) / chronic fatigue syndrome: diagnosis and management: Evidence review D (PDF). NICE Evidence Reviews Collection. London: National Institute for Health and Care Excellence (NICE). ISBN   978-1-4731-4221-3. PMID   35438857. Archived from the original on February 19, 2024. Retrieved September 23, 2023.
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  12. 1 2 3 Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T, et al. (October 2011). "Myalgic encephalomyelitis: International Consensus Criteria". Journal of Internal Medicine . 270 (4): 327–338. doi: 10.1111/j.1365-2796.2011.02428.x . PMC   3427890 . PMID   21777306.
  13. 1 2 "1.2 Suspecting ME/CFS". Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management – Recommendations. NICE (Report). October 29, 2021. NICE guideline NG206. Archived from the original on December 29, 2021. Retrieved May 12, 2022.
  14. ↑ "Information for Healthcare Providers | ME/CFS | CDC". www.cdc.gov. November 11, 2022. Archived from the original on August 9, 2020. Retrieved June 7, 2023.
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  18. 1 2 "IOM 2015 Diagnostic Criteria | Diagnosis | Healthcare Providers | Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) | CDC". www.cdc.gov. November 8, 2018. Archived from the original on March 8, 2019. Retrieved March 8, 2019.
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  22. ↑ "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Key Facts" (PDF). nap.edu. 2015. p. 2. Archived (PDF) from the original on March 27, 2019. Retrieved March 8, 2019.
  23. ↑ Wright Clayton E, Alegria M, Bateman L, Chu L, Cleeland C, Davis R, et al. (2015). "Beyond Myalgic Encephalomyelits/Chronic Fatigue Syndrome: Redefining an Illness (Report Guide for Clinicians)" (PDF). nationalacademies.org. Nancy Klimas, A. Martin Lerner, Cynthia Mulrow, Benjamin Natelson, Peter Rowe, Michael Shelanski. National Academy of Medicine (Institutes of Medicine). p. 7. Archived (PDF) from the original on September 29, 2018. Retrieved March 8, 2019.
  24. ↑ Sharpe M (February 1991). "A report--chronic fatigue syndrome: guidelines for research". Journal of the Royal Society of Medicine. 84 (2): 118–121. doi:10.1177/014107689108400224. PMC   1293107 . PMID   1999813.
  25. ↑ "1.11 Managing ME/CFS". Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management – Recommendations. NICE (Report). October 29, 2021. NICE guideline NG206. Archived from the original on December 29, 2021. Retrieved July 17, 2022.
  26. ↑ Clinical management of COVID-19 Living Guideline. World Health Organization. January 13, 2023. p. 109. Archived from the original on May 22, 2023. Retrieved January 14, 2023.
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