Post-exertional malaise may persist in Long COVID despite learning STOP-REST-PACE

Background Objective Methods Results Conclusions Physical activity used in rehabilitation can trigger post-exertional malaise (PEM) in people with Long COVID. Concerns remain if the STOP-REST-PACE approach promoted by patient communities and professional organizations can be safely administered and contributes to return to usual activities.(1) To observe PEM over 12 weeks of telerehabilitation based on the STOP-REST-PACE approach. (2) To describe the changes in health-related quality of life (HRQoL), respiratory symptoms, fatigue and return to work.This was an observational prospective cohort of participants with Long COVID referred to a telerehabilitation service. Participants received up to 14 h of physiotherapy and occupational therapy over 12 weeks based on the STOP-REST-PACE approach. Frequency was personalized, up to two sessions weekly. An independent coordinator assessed PEM, HRQoL, respiratory symptoms, fatigue and return to work.Thirty-four participants were included and 30 completed the 12 weeks of telerehabilitation. Participants had an average of eight impairments. We found PEM in all participants at baseline. After 12 weeks, PEM remained present for 19 out of 30 participants. Respiratory symptoms significantly improved (COPD Assessment Test: 19.2 ± 7.3 vs 13.8 ± 7.7, p < .001). Fatigue and HRQoL did not significantly improve (p = 0.32 and p = 0.20, respectively). Only four participants were able to work full time.PEM persisted for close to two-third of participants despite learning the STOP-REST-PACE approach through physical and occupational therapy sessions over 12 weeks. Respiratory symptoms improved, but we did not observe a difference in fatigue and HRQoL. Return to work was out of reach for most participants. [ FROM AUTHOR] Copyright of Fatigue: Biomedicine, Health & Behavior is the property of Taylor & Francis Ltd and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full . (Copyright applies to all s.)

"A Switch Went off in my Whole Body": Lived Experiences of Fatigue and Post-Exertional Malaise in Long Covid

The growing HCI agenda on health has focused on different chronic conditions but less so on Long Covid, despite its severe impact on the quality of life. We report findings from 2 workshops with 13 people living with Long Covid, indicating the challenges of making sense of their physical, cognitive, and emotional symptoms, and of monitoring the triggers of post-exertional malaise. While most participants engage in pacing activities for the self-management of fatigue, only a few are aware of the importance of planning all their daily activities and routines in order to avoid post-exertional malaise. We conclude with design implications to support lightweight tracking and sensemaking of fatigue symptoms, novel data analytics for monitoring the triggers of post-exertional malaise and the worsening of symptoms, and support for self-management in order to prevent post-exertional malaise. © 2023 Owner/Author.

Fatigue in Post-Acute Sequelae of Coronavirus Disease 2019.

Fatigue from post-acute sequelae of coronavirus disease 2019 is a complex constellation of symptoms that could be driven by a wide spectrum of underlying etiologies. Despite this, there seems to be hope for treatment plans that focus on addressing possible etiologies and creating a path to improving quality of life and a paced return to activity.

Exercise intolerance associated with impaired oxygen extraction in patients with long COVID.

OBJECTIVE: Chronic mental and physical fatigue and post-exertional malaise are the more debilitating symptoms of long COVID-19. The study objective was to explore factors contributing to exercise intolerance in long COVID-19 to guide development of new therapies. Exercise capacity data of patients referred for a cardiopulmonary exercise test (CPET) and included in a COVID-19 Survivorship Registry at one urban health center were retrospectively analyzed. RESULTS: Most subjects did not meet normative criteria for a maximal test, consistent with suboptimal effort and early exercise termination. Mean O2 pulse peak % predicted (of 79 ± 12.9) was reduced, supporting impaired energy metabolism as a mechanism of exercise intolerance in long COVID, n = 59. We further identified blunted rise in heart rate peak during maximal CPET. Our preliminary analyses support therapies that optimize bioenergetics and improve oxygen utilization for treating long COVID-19.

Post-exertional malaise in pulmonary rehabilitation after COVID-19: Are we not giving enough attention?

Post COVID-19 condition is defined as the illness that occurs in people who have a history of probable or confirmed SARS-CoV-2 infection;usually within three months from the onset of COVID-19, with symptoms and effects that last for at least two months. The most common symptoms of people with post-COVID condition are symptoms of fatigue, dyspnea, brain fog and post-exertional malaise (PEM). International guidelines on the management of COVID-19 highlight the importance of screening patients for PEM before rehabilitation interventions and carefully monitoring symptoms in response to physical activity to avoid flare-ups. We sought to determine how PEM is being considered in the context of rehabilitation for COVID-19 by reviewing the published literature and registries of clinical trials.Copyright © 2023 Canadian Thoracic Society.

Historical perspectives, including chronic fatigue syndrome/Myalgic Encephalomyelitis and Fibromyalgia

The illnesses that most resemble long-COVID syndrome are Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME) and fibromyalgia. This chapter describes the similar symptoms of these conditions to long-COVID syndrome. It discusses what is termed chronic Lyme disease, or post-treatment Lyme disease syndrome, as an example of an analogous, unexplained syndrome following an infection. CFS/ME are diagnostic labels used to describe a syndrome characterized by chronic fatigue, post-exertional malaise, muscle pain, and cognitive disturbances often attributed to a possible infection but without a defined cause or pathology. Fibromyalgia, like CFS/ME, has been around for centuries in various guises. Abnormalities of the central and autonomic nervous system are prominent in fibromyalgia and CFS/ME. CFS/ME and fibromyalgia are sometimes referred to as functional, somatic syndromes. Patients with CFS/ME and fibromyalgia often express frustration with medical professionals' approach to their illness. © 2023 John Wiley & Sons Ltd. All rights reserved.

Development and measurement properties of the PEM/PESE activity questionnaire (PAQ).

BACKGROUND: Existing instruments often are inappropriate to measure the effects of post-exertional malaise (PEM) and post-exertional symptom exacerbation (PESE) on activities of daily living (ADLs). A validated questionnaire to measure self-reported ability with ADLs would advance research and clinical practice in conditions like myalgic encephalomyelitis and Long Covid. OBJECTIVE: Determine the measurement properties of the PEM/PESE Activity Questionnaire (PAQ). METHODS: The PAQ is adapted from the Patient Specific Functional Scale. Respondents rated three self-selected ADLs on two 0-100 scales, including current performance compared to (1) a 'good day' and (2) before illness. Respondents provided a Burden of Functioning rating on a 0-100 scale, anchored at 0 being the activity took "No time, effort, and resources at all" and 10 being "All of my time, effort, and resources." Respondents took the PAQ twice, completing a demographic questionnaire after the first PAQ and before the second PAQ. Descriptive statistics and intraclass correlation coefficients were calculated for each scale to assess test-retest reliability. Minimum detectable change outside the 95% confidence interval (MDC95) was calculated. Ceiling and floor effects were determined when the MDC95 for average and function scores crossed 0 and 100, respectively. RESULTS: n = 981 responses were recorded, including n = 675 complete surveys. Test-retest reliability was generally fair to excellent, depending on function and scale. MDC95 values generally indicated scale responsiveness. Ceiling and floor effects were noted infrequently for specific functions. CONCLUSION: The PAQ is valid, reliable, and sensitive. Additional research may explore measurement properties involving functions that were infrequently selected in this sample.

Improvement of Long COVID symptoms over one year.

Importance: Early and accurate diagnosis and treatment of Long COVID, clinically known as post-acute sequelae of COVID-19 (PASC), may mitigate progression to chronic diseases such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Our objective was to determine the utility of the DePaul Symptom Questionnaire (DSQ) to assess the frequency and severity of common symptoms of ME/CFS, to diagnose and monitor symptoms in patients with PASC. Methods: This prospective, observational cohort study enrolled 185 people that included 34 patients with PASC that had positive COVID-19 test and persistent symptoms of >3 months and 151 patients diagnosed with ME/CFS. PASC patients were followed over 1 year and responded to the DSQ at baseline and 12 months. ME/CFS patients responded to the DSQ at baseline and 1 year later. Changes in symptoms over time were analyzed using a fixed-effects model to compute difference-in-differences estimates between baseline and 1-year follow-up assessments. Participants: Patients were defined as having PASC if they had a previous positive COVID-19 test, were experiencing symptoms of fatigue, post-exertional malaise, or other unwellness for at least 3 months, were not hospitalized for COVID-19, had no documented major medical or psychiatric diseases prior to COVID-19, and had no other active and untreated disease processes that could explain their symptoms. PASC patients were recruited in 2021. ME/CFS patients were recruited in 2017. Results: At baseline, patients with PASC had similar symptom severity and frequency as patients with ME/CFS and satisfied ME/CFS diagnostic criteria. ME/CFS patients experienced significantly more severe unrefreshing sleep and flu-like symptoms. Five symptoms improved significantly over the course of 1 year for PASC patients including fatigue, post-exertional malaise, brain fog, irritable bowel symptoms and feeling unsteady. In contrast, there were no significant symptom improvements for ME/CFS patients. Conclusion and relevance: There were considerable similarities between patients with PASC and ME/CFS at baseline. However, symptoms improved for PASC patients over the course of a year but not for ME/CFS patients. PASC patients with significant symptom improvement no longer met ME/CFS clinical diagnostic criteria. These findings indicate that the DSQ can be used to reliably assess and monitor PASC symptoms.

Effect of using a structured pacing protocol on post-exertional symptom exacerbation and health status in a longitudinal cohort with the post-COVID-19 syndrome.

BACKGROUND: Post Exertional Symptom Exacerbation (PESE) is a characteristic symptom of Post-COVID Syndrome (PCS). OBJECTIVES: This prospective study investigated the effect of a 6-week structured World Health Organisation (WHO) Borg CR-10 5-phase pacing protocol on PESE episodes and quality of life in a cohort of individuals with long-standing PCS (average duration of symptoms was 17 months). METHODS: Participants received weekly telephone calls with a clinician to complete the Leeds PESE Questionnaire (LPQ) and identify the appropriate phase of the pacing protocol. EQ-5D 5L was completed at the intervention's beginning and end to measure overall health. RESULTS: Thirty-one participants completed the 6-week protocol, with a statistically and clinically significant reduction in the average number of PESE episodes (from 3.4 episodes in week one to 1.1 in week six), with an average decrease of 16% (95% CI: 9% to 24%; p<0.001) each week, and reduction across all three exertional triggers (physical, cognitive, and emotional). Physical activity levels showed moderate improvements during the intervention period. Mean EQ-5D 5L scores improved from 51.4 points to 60.6 points (paired difference of 9.2 points, 95% CI: 3.2 to 15.2 points; p=0.004). CONCLUSIONS: A structured pacing protocol significantly reduces PESE episodes and improves overall health in PCS. This article is protected by copyright. All rights reserved.

[Post-COVID syndrome with fatigue and exercise intolerance: myalgic encephalomyelitis/chronic fatigue syndrome]. / Post-COVID-Syndrom mit Fatigue und Belastungsintoleranz: Myalgische Enzephalomyelitis bzw. Chronisches Fatigue-Syndrom.

BACKGROUND: A sizable part of post-COVID syndrome meets the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A doubling of cases of ME/CFS within the next years is therefore projected. OBJECTIVES: Presentation of the current state of knowledge on ME/CFS. MATERIALS AND METHODS: Unsystematic review of the literature and of own contributions in research and patient care. RESULTS AND CONCLUSIONS: ME/CFS is a neuroimmunological disease, mostly infection-induced, usually persisting throughout life. Clinically it is characterized by fatigue lasting at least 6 months and the defining core feature of exercise intolerance (post-exertional malaise, PEM). Exercise intolerance is defined as a worsening of symptoms after (even mild) everyday exertion, which usually begins after several hours or on the following day, is still noticeable at least 14 h after exertion, and often lasts for several days (up to weeks or longer). Furthermore, ME/CFS is characterized by pain, disturbances of sleep, thinking and memory, and dysregulation of the circulatory, endocrine, and immune systems. As a separate clinical entity, ME/CFS should be distinguished from chronic fatigue, which occurs as a symptom of a range of very different diseases. The diagnosis of ME/CFS is made clinically using established international diagnostic criteria and requires careful stepwise diagnosis to exclude other diagnoses. A causal therapy for ME/CFS has not been established; the focus is on symptoms relief, treatment of the often accompanying orthostatic intolerance, and assistance with anticipatory energy management (pacing).

Clinical Characteristics of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Diagnosed in Patients with Long COVID.

Background and Objectives: COVID-19 can be serious not only in the acute phase but also after the acute phase and some patients develop ME/CFS. There have been few studies on patients with long COVID in whom ME/CFS was diagnosed by physicians based on standardized criteria after examinations and exclusion diagnosis and not based on only subjective symptoms. The purpose of this study was to elucidate the detailed characteristics of ME/CFS in patients with long COVID. Materials and Methods: A retrospective descriptive study was performed for patients who visited a COVID-19 aftercare clinic established in Okayama University Hospital during the period was from February 2021 to April 2022. Results: Clinical data were obtained from medical records for 281 patients, and 279 patients who met the definition of long COVID were included. The overall prevalence rate of ME/CFS diagnosed by three sets of ME/CFS criteria (Fukuda, Canadian and IOM criteria) was 16.8% (48.9% in male and 51.1% in females). The most frequent symptoms in ME/CFS patients were general fatigue and post-exertional malaise (89.4% of the patients), headache (34.0%), insomnia (23.4%), dysosmia (21.3%) and dysgeusia (19.1%). Dizziness, chest pain, insomnia and headache were characteristic symptoms related to ME/CFS. The male to female ratio in ME/CFS patients was equal in the present study, although ME/CFS was generally more common in women in previous studies. Given that patients with ME/CFS had more severe conditions in the acute phase of COVID-19, the severity of the acute infectious state might be involved in the pathophysiology of ME/CFS. Conclusions: The prevalence rate of ME/CFS and the characteristic sequelae in the long COVID condition were revealed in this study.

COVID-19 in the perioperative setting: A review of the literature and the clinical landscape.

The COVID-19 pandemic has dramatically affected societies and healthcare systems around the globe. The perioperative care continuum has also been under significant strain due to the pandemic-tasked with simultaneously addressing surgical strains and backlogs, infection prevention strategies, and emerging data regarding significantly higher perioperative risk for COVID-19 patients and survivors. Many uncertainties persist regarding the perioperative risk, assessment, and management of COVID-19 survivors-and the energy to catch up on surgical backlogs must be tempered with strategies to continue to mitigate COVID-19 related perioperative risk. Here, we review the available data for COVID-19-related perioperative risk, discuss areas of persistent uncertainty, and empower the perioperative teams to pursue evidence-based strategies for high quality, patient-centered, team-based care as we enter the third year of the COVID-19 pandemic.

The Relationship between Physical Activity and Long COVID: A Cross-Sectional Study.

The relationship between Long Covid (LC) symptoms and physical activity (PA) levels are unclear. In this cross-sectional study, we examined this association, and the advice that individuals with LC received on PA. Adults with LC were recruited via social media. The New Zealand physical activity questionnaire short form (NZPAQ-SF) was adapted to capture current and pre-COVID-19 PA levels and activities of daily living (ADLs). Participants reported how PA affected their symptoms, and what PA recommendations they had received from healthcare professionals and other resources; 477 participants completed the survey. Mean age (SD) was 45.69 (10.02) years, 89.1% female, 92.7% white, and median LC duration was 383.5 days (IQR: 168.25,427). Participants were less active than pre-COVID-19 (26.88 ± 74.85 vs. 361.68 ± 396.29 min per week, p < 0.001) and required more assistance with ADLs in a 7-day period compared to pre-COVID-19 (2.23 ± 2.83 vs. 0.11 ± 0.74 days requiring assistance, p < 0.001). No differences were found between the number of days of assistance required with ADLs, or the amount of PA, and the different durations of LC illness (p > 0.05). Participants reported the effect of PA on LC symptoms as: worsened (74.84%), improved (0.84%), mixed effect (20.96%), or no effect (28.72%). Participants received contradictory advice on whether to be physically active in LC. LC is associated with a reduction in PA and a loss of independence, with most participants reporting PA worsened LC symptoms. PA level reduction is independent of duration of LC. Research is needed to understand how to safely return to PA without worsening LC symptoms.

[Post-corona fatigue-a familiar picture in a new guise?] / Post-Corona-Fatigue ­ das bekannte Bild in neuem Gewand?

BACKGROUND: Myalgic encephalitis or chronic fatigue syndrome (ME/CFS) has again come into focus as a result of coronavirus disease 2019 (COVID-19). Fundamentally problematic is the fact that ME/CFS is considered a separate entity; however, extreme fatigue is also a common symptom of an underlying disease. Our article aims to increase the acceptance of ME/CFS and extreme fatigue facing a symptomatology that is not fully understood, and to highlight the need for research, orientation for physicians, and counselling services for patients. MATERIALS AND METHODS: Orientative research by focused information gathering. RESULTS: In various research projects, the hypothesis of post-infectious ME/CFS as an autoimmune disease could be confirmed. In general, the heterogeneity of diagnostic criteria as well as the variety of formulations to describe the symptomatology and different coding options make it difficult to clearly assign symptoms to a clinical picture. Exertion intolerance has been identified as a severe symptom of post-COVID-19 disorder. For this reason, recommendations in international guidelines are currently being revised, especially with regard to pacing. The implications for recommendations in tumor-related fatigue or due to multiple sclerosis are unclear. CONCLUSION: Against the background of a decreasing burden of disease due to increasing vaccination rates, research on fatigue should not only include viral diseases.

Pain Burden in Post-COVID-19 Syndrome following Mild COVID-19 Infection.

The global pandemic of SARS-CoV-2 has affected several hundred million people, and many infected people have suffered from a milder initial infection but have never fully recovered. This observational study investigates the pain burden in sufferers of post-COVID-19 syndrome after a milder initial infection. One hundred post-COVID-19 patients filled out questionnaires regarding sociodemographic data, previous comorbidities, present pharmacological treatment, pain intensity and pain localisation. Health-related quality of life, fatigue, emotional status, and insomnia were measured by validated questionnaires. Multiple post-COVID-19 symptoms, including post-exertional malaise, were evaluated by a symptom questionnaire. Among the 100 participants (mean age 44.5 years), 82% were women, 61% had higher education, and 56% were working full or part time. Nine participants reported previous pain or inflammatory conditions. Among the most painful sites were the head/face, chest, lower extremities, and migrating sites. Generalised pain was self-reported by 75 participants and was estimated in 50 participants. Diagnosis of fibromyalgia according to the 2016 criteria was suspected in 40 participants. Subgroup analyses indicated that comorbidities might play a role in the development of pain. In conclusion, a major part of sufferers from post-COVID-19 syndrome develop pain, and in addition to its many disabling symptoms, there is an urgent need for pain management in post-COVID-19 syndrome.

Chronotropic Incompetence in Non-Hospitalized Patients with Post-COVID-19 Syndrome.

Patients recovering from COVID-19 commonly report persistence of dyspnea, exertional fatigue, and difficulties in carrying out their daily activities. However, the nature of these symptoms is still unknown. The purpose of the study was to identify limiting causes of cardiopulmonary origin for the performance of physical exercise in post-COVID-19 condition that could explain the symptomatic persistence of dyspnea or fatigue-related symptoms. Thirty-two non-hospitalized patients with post-COVID-19 condition (i.e., still presenting a chronic symptomatic phase lasting >90 days since debut of symptoms that lasted for at least 2 months and cannot be explained by an alternative diagnosis) completed a clinical examination including echocardiography, submaximal and maximal cardiorespiratory fitness tests (Ekblom-Bak and Bruce's protocols), and a battery of validated questionnaires about fatigue and exercise intolerance. Four participants (12.5%) reported an abnormal cardiac response to exercise during the submaximal test, which aroused suspicion of the presence of chronotropic incompetence. All of them were confirmed with a positive diagnosis maximal exercise test after cardiology screening, even with a comprehensive clinical examination, resting ECG, and echocardiogram, without other findings. No statistical differences were found in any physiological variables or questionnaire values, between patients with positive and negative diagnoses. Chronotropic incompetence and other autonomic disorders may appear in patients with mild forms of COVID-19 presentation and may persist in the long term, being responsible for exercise intolerance after resolution of acute infection. Clinicians should be aware that chronotropic incompetence and other autonomic disorders may be a complication of COVID-19 and should consider appropriate diagnostic and therapeutic interventions in these patients, especially when early exercise-related fatigability is reported.