Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Stussman, Barbara J; Williams, Ashley; Snow, Joseph; Gavin, Angelique; Scott, Remle; Nath, Avindra; Walitt, Brian

doi:10.3389/fneur.2020.01025

Cited by 100 publications

(92 citation statements)

References 36 publications

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“…The survey asked participants whether they have experienced “worsening or relapse of symptoms after physical or mental activity during COVID-19 recovery” [11]. Borrowing from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) terminology [20], this is referred to as post-exertional malaise (PEM). 89.1% of participants (95% confidence interval 88.0% to 90.0%) reported experiencing either physical or mental PEM.…”

Section: Resultsmentioning

confidence: 99%

Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact

Davis

Assaf

McCorkell

et al. 2020

Preprint

251

289

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ObjectiveTo characterize the symptom profile and time course in patients with Long COVID, along with the impact on daily life, work, and return to baseline health.DesignInternational web-based survey of suspected and confirmed COVID-19 cases with illness lasting over 28 days and onset prior to June 2020.SettingSurvey distribution via online COVID-19 support groups and social mediaParticipants3,762 respondents from 56 countries completed the survey. 1166 (33.7%) were 40-49 years old, 937 (27.1%) were 50-59 years old, and 905 (26.1%) were 30-39 years old. 2961 (78.9%) were women, 718 (19.1%) were men, and 63 (1.7%) were nonbinary. 8.4% reported being hospitalized. 27% reported receiving a laboratory-confirmed diagnosis of COVID-19. 96% reported symptoms beyond 90 days.ResultsPrevalence of 205 symptoms in 10 organ systems was estimated in this cohort, with 66 symptoms traced over seven months. Respondents experienced symptoms in an average of 9.08 (95% confidence interval 9.04 to 9.13) organ systems. The most frequent symptoms reported after month 6 were: fatigue (77.7%, 74.9% to 80.3%), post-exertional malaise (72.2%, 69.3% to 75.0%), and cognitive dysfunction (55.4%, 52.4% to 58.8%). These three symptoms were also the three most commonly reported overall. In those who recovered in less than 90 days, the average number of symptoms peaked at week 2 (11.4, 9.4 to 13.6), and in those who did not recover in 90 days, the average number of symptoms peaked at month 2 (17.2, 16.5 to 17.8). Respondents with symptoms over 6 months experienced an average of 13.8 (12.7 to 14.9) symptoms in month 7. 85.9% (84.8% to 87.0%) experienced relapses, with exercise, physical or mental activity, and stress as the main triggers. 86.7% (85.6% to 92.5%) of unrecovered respondents were experiencing fatigue at the time of survey, compared to 44.7% (38.5% to 50.5%) of recovered respondents. 45.2% (42.9% to 47.2%) reported requiring a reduced work schedule compared to pre-illness and 22.3% (20.5% to 24.3%) were not working at the time of survey due to their health conditions.ConclusionsPatients with Long COVID report prolonged multisystem involvement and significant disability. Most had not returned to previous levels of work by 6 months. Many patients are not recovered by 7 months, and continue to experience significant symptom burden.

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Section: Resultsmentioning

confidence: 99%

Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact

Davis

Assaf

McCorkell

et al. 2020

Preprint

251

289

View full text Add to dashboard Cite

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“…The survey asked respondents to detail their experience of a subset of 66 symptoms over time. Respondents indicated whether each of these symptoms was present during a series of time intervals following the onset of their first symptoms: week 1 (days 1-7), week 2 (days 8-14), week 3 (days [15][16][17][18][19][20][21], week 4 (days 22-30), month 2 (days 31-60), month 3 (days 61-90), month 4 (days 91-120), month 5 (days 121-150, month 6 (days 151-180), and month 7 (days 181-210).…”

Section: Symptom Time Course Estimationmentioning

confidence: 99%

Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact

et al. 2021

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Objective. To characterize the symptom profile and time course in patients with Long COVID, along with the impact on daily life, work, and return to baseline health.Design. International web-based survey of suspected and confirmed COVID-19 cases with illness lasting over 28 days and onset prior to June 2020. Setting. Survey distribution via online COVID-19 support groups and social mediaParticipants. 3,762 respondents from 56 countries completed the survey. 1166 (33.7%) were 40-49 years old, 937 (27.1%) were 50-59 years old, and 905 (26.1%) were 30-39 years old. 2961 (78.9%) were women, 718 (19.1%) were men, and 63 (1.7%) were nonbinary. 8.4% reported being hospitalized. 27% reported receiving a laboratory-confirmed diagnosis of COVID-19. 96% reported symptoms beyond 90 days.Results. Prevalence of 205 symptoms in 10 organ systems was estimated in this cohort, with 66 symptoms traced over seven months. Respondents experienced symptoms in an average of 9.08 (95% confidence interval 9.04 to 9.13) organ systems. The most frequent symptoms reported after month 6 were: fatigue (77.7%, 74.9% to 80.3%), post-exertional malaise (72.2%, 69.3% to 75.0%), and cognitive dysfunction (55.4%, 52.4% to 58.8%). These three symptoms were also the three most commonly reported overall. In those who recovered in less than 90 days, the average number of symptoms peaked at week 2 (11.4, 9.4 to 13.6), and in those who did not recover in 90 days, the average number of symptoms peaked at month 2 (17.2, 16.5 to 17.8). Respondents with symptoms over 6 months experienced an average of 13.8 (12.7 to 14.9) symptoms in month 7. 85.9% (84.8% to 87.0%) experienced relapses, with exercise, physical or mental activity, and stress as the main triggers. 86.7% (85.6% to 92.5%) of unrecovered respondents were experiencing fatigue at the time of survey, compared to 44.7% (38.5% to 50.5%) of recovered respondents. 45.2% (42.9% to 47.2%) reported requiring a reduced work schedule compared to pre-illness and 22.3% (20.5% to 24.3%) were not working at the time of survey due to their health conditions. Conclusions.Patients with Long COVID report prolonged multisystem involvement and significant disability. Most had not returned to previous levels of work by 6 months. Many patients are not recovered by 7 months, and continue to experience significant symptom burden..

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“…A considerable amount of the patients diagnosed with ME/CFS show prolonged exacerbation of their symptoms after minimal amounts of physical, sensory, emotional or cognitive effort [ 1 , 9 – 11 ]. This phenomenon is termed post‐exertional malaise (PEM).…”

Section: Introductionmentioning

confidence: 99%

The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis

Wormgoor

Rodenburg

2021

J Transl Med

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Background Due to the inconsistent use of diagnostic criteria in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), it is unsure whether physiotherapeutic management regarded effective in ME/CFS is appropriate for patients diagnosed with criteria that consider post-exertional malaise (PEM) as a hallmark feature. Purpose To appraise current evidence of the effects of physiotherapy on symptoms and functioning in ME/CFS patients in view of the significance of PEM in the applied diagnostic criteria for inclusion. Methods A systematic review of randomized controlled trials published over the last two decades was conducted. Studies evaluating physiotherapeutic interventions for adult ME/CFS patients were included. The diagnostic criteria sets were classified into three groups according to the extent to which the importance of PEM was emphasized: chronic fatigue (CF; PEM not mentioned as a criterion), CFS (PEM included as an optional or minor criterion) or ME (PEM is a required symptom). The main results of included studies were synthesized in relation to the classification of the applied diagnostic criteria. In addition, special attention was given to the tolerability of the interventions. Results Eighteen RCTs were included in the systematic review: three RCTs with CF patients, 14 RCTs with CFS patients and one RCT covering ME patients with PEM. Intervention effects, if any, seemed to disappear with more narrow case definitions, increasing objectivity of the outcome measures and longer follow-up. Conclusion Currently, there is no scientific evidence when it comes to effective physiotherapy for ME patients. Applying treatment that seems effective for CF or CFS patients may have adverse consequences for ME patients and should be avoided.

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Characterization of Post–exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Cited by 100 publications

References 36 publications

Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact

Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact

Characterizing Long COVID in an International Cohort: 7 Months of Symptoms and Their Impact

The evidence base for physiotherapy in myalgic encephalomyelitis/chronic fatigue syndrome when considering post-exertional malaise: a systematic review and narrative synthesis

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