Work - Volume 74, issue 4

Authors: Jacobs, Karen

Article Type: Editorial

DOI: 10.3233/WOR-236003

Citation: Work, vol. 74, no. 4, pp. 1173-1174, 2023

Authors: Mooney, Amy

Article Type: Editorial

DOI: 10.3233/WOR-236013

Citation: Work, vol. 74, no. 4, pp. 1175-1177, 2023

Authors: Vernon, Suzanne D. | Hartle, Megan | Sullivan, Karen | Bell, Jennifer | Abbaszadeh, Saeed | Unutmaz, Derya | Bateman, Lucinda

Article Type: Research Article

Abstract: BACKGROUND: Long COVID describes a condition with symptoms that linger for months to years following acute COVID-19. Many of these Long COVID symptoms are like those experienced by patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). OBJECTIVE: We wanted to determine if people with Long COVID experienced post-exertional malaise (PEM), the hallmark symptom of ME/CFS, and if so, how it compared to PEM experienced by patients with ME/CFS. METHODS: A questionnaire that asked about the domains of PEM including triggers, experience, recovery, and prevention was administered to 80 people seeking care for Long COVID at Bateman Horne …Center. Their responses were compared to responses about PEM given by 151 patients with ME/CFS using chi-square tests of independence. RESULTS: All but one Long COVID respondent reported having PEM. There were many significant differences in the types of PEM triggers, symptoms experienced during PEM, and ways to recover and prevent PEM between Long COVID and ME/CFS. Similarities between Long COVID and ME/CFS included low and medium physical and cognitive exertion to trigger PEM, symptoms of fatigue, pain, immune reaction, neurologic, orthostatic intolerance, and gastrointestinal symptoms during PEM, rest to recover from PEM, and pacing to prevent PEM. CONCLUSION: People with Long COVID experience PEM. There were significant differences in PEM experienced by people with Long COVID compared to patients with ME/CFS. This may be due to the newness of Long COVID, not knowing what exertional intolerance is or how to manage it. Show more

Keywords: Post-acute COVID-19 syndrome, long haul COVID, post-viral fatigue syndrome, exertional intolerance, fatigue

DOI: 10.3233/WOR-220581

Citation: Work, vol. 74, no. 4, pp. 1179-1186, 2023

Authors: Davenport, Todd E. | Stevens, Staci R. | Stevens, Jared | Snell, Christopher R. | Van Ness, J. Mark

Article Type: Research Article

Abstract: 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. Show more

Keywords: Myalgic encephalomyelitis, chronic fatigue syndrome, post-exertional malaise, health related quality of life, measurement

DOI: 10.3233/WOR-220553

Citation: Work, vol. 74, no. 4, pp. 1187-1197, 2023

Authors: Davenport, Todd E. | Chu, Lily | Stevens, Staci R. | Stevens, Jared | Snell, Christopher R. | Van Ness, J. Mark

Article Type: Research Article

Abstract: BACKGROUND: Post-exertional malaise (PEM) is the hallmark symptom of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) yet its diverse manifestations make it difficult to recognize. Brief instruments for detecting PEM are critical for clinical and scientific progress. OBJECTIVE: To develop a clinical prediction rule for PEM. METHOD: 49 ME/CFS and 10 healthy, sedentary subjects recruited from the community completed two maximal cardiopulmonary exercise tests (CPETs) separated by 24 hours. At five different times, subjects reported symptoms which were then classified into 19 categories. The frequency of symptom reports between groups at each time point was compared using Fisher’s …exact test. Receiver operating characteristics (ROC) analysis with area under the curve calculation was used to determine the number of different types of symptom reports that were sufficient to differentiate between ME/CFS and sedentary groups. The optimal number of symptoms was determined where sensitivity and specificity of the types of symptom reports were balanced. RESULTS: At all timepoints, a maximum of two symptoms was optimal to determine differences between groups. Only one symptom was necessary to optimally differentiate between groups at one week following the second CPET. Fatigue, cognitive dysfunction, lack of positive feelings/mood and decrease in function were consistent predictors of ME/CFS group membership across timepoints. CONCLUSION: Inquiring about post-exertional cognitive dysfunction, decline in function, and lack of positive feelings/mood may help identify PEM quickly and accurately. These findings should be validated with a larger sample of patients. Show more

Keywords: Myalgic encephalomyelitis, chronic fatigue syndrome, post-exertional malaise, symptoms, diagnosis

DOI: 10.3233/WOR-220554

Citation: Work, vol. 74, no. 4, pp. 1199-1213, 2023

Authors: Jason, Leonard A. | Dorri, Joseph A.

Article Type: Research Article

Abstract: BACKGROUND: There is limited information on which acute factors predict more long-term symptoms from COVID-19. OBJECTIVE: Our objective was to conduct an exploratory factor analysis of self-reported symptoms at two time points of Long COVID-19. METHODS: Data from patients with Long COVID-19 were collected at the initial two weeks of contracting SARS CoV-2 and the most recent two weeks, with a mean duration of 21.7 weeks between the two-time points. At time point 2, participants also completed the Coronavirus Impact Scale (CIS), measuring how the COVID-19 pandemic affected various dimensions of their lives (e.g., routine, access …to medical care, social/family support, etc.). RESULTS: At time 1, a three-factor model emerged consisting of Cognitive Dysfunction, Autonomic Dysfunction and Gastrointestinal Dysfunction. The analysis of time 2 resulted in a three-factor model consisting of Cognitive Dysfunction, Autonomic Dysfunction, and Post-Exertional Malaise. Using factor scores from time 1, the Autonomic Dysfunction and the Gastrointestinal Dysfunction factor scores significantly predicted the CIS summary score at time two. In addition, the same two factor scores at time 1 predicted the occurrence of myalgic encephalomyelitis/chronic fatigue syndrome at time 2. CONCLUSION: Cognitive and Autonomic Dysfunction emerged as factors for both time points. These results suggest that healthcare workers might want to pay particular attention to these factors, as they might be related to later symptoms and difficulties with returning to pre-illness family life and work functioning. Show more

Keywords: Long COVID-19, SARS CoV-2 virus, PASC, exploratory factor analysis, myalgic encephalomyelitis/chronic fatigue syndrome

DOI: 10.3233/WOR-220428

Citation: Work, vol. 74, no. 4, pp. 1215-1224, 2023

Authors: Clague-Baker, Nicola | Davenport, Todd E. | Madi, Mohammad | Dickinson, Kathryn | Leslie, Karen | Bull, Michelle | Hilliard, Natalie

Article Type: Research Article

Abstract: BACKGROUND: Myalgic encephalomyelitis (ME) is a complex, multi-system neurological condition. The defining feature of ME is post-exertional malaise (PEM) with over 30 symptoms triggered by physical, cognitive, emotional and social activity. The cause of PEM is unclear but one area of research using cardio-pulmonary exercise tests show a reduced ventilatory anaerobic threshold (VAT) with repeated tests leading to PEM. Pacing with heart rate monitoring (HRM) provides feedback to maintain activity intensity below the VAT. There is only one piece of research investigating the use of HRM although a number of guidelines recommend it. OBJECTIVE: To identify the experiences …and attitudes of people with ME towards HRM. METHODS: A 40 question online survey was devised and released on ME websites, Twitter and Facebook pages. People with ME read the information sheet and followed an online link to the survey. The survey was open for three weeks and all answers were anonymous. RESULTS: 488 people with ME completed the survey. Most participants were female, 35-50 years and with a reported illness of greater than 5 years. Over 100 types of HR monitor used. Over 30 benefits and over 30 negatives identified. HRM reduced severity of ME and severity and duration of PEM. CONCLUSION: Although there are limitations, HRM has many benefits including helping PwME to understand and manage their PEM and support them to increase their activities, including work. There is a need for more research and education of healthcare professionals in the safe use of HRM. Show more

Keywords: Surveys and questionnaires, therapeutics, neurology

DOI: 10.3233/WOR-220512

Citation: Work, vol. 74, no. 4, pp. 1225-1234, 2023

Authors: Tuller, David | Vink, Mark

Article Type: Article Commentary

Keywords: Disability, rehabilitation, long Covid, chronic illnesses, exercise, unemployment, work capacity, myalgic encephalomyelitis

DOI: 10.3233/WOR-220569

Citation: Work, vol. 74, no. 4, pp. 1235-1239, 2023

Authors: Johnson, Madeline | Torres, Chelsea | Watts-Rich, Halli | Jason, Leonard

Article Type: Research Article

Abstract: BACKGROUND: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating chronic illness that impacts pediatric populations. OBJECTIVE: The current study aimed to better understand adult perceptions of their experiences leading up to their diagnosis of ME/CFS. METHOD: Patients provided data regarding symptoms of ME/CFS they may have experienced during childhood through a popular community blog forum, with participants interacting via blog comments in real-time and across various geographical locations. RESULTS: Descriptive analyses indicated that roughly 43% of adult survey participants reported having developed ME/CFS prior to age 18. A standard content analysis of patient blog …commentary revealed several themes, such as poor mental health, family pattern/history, healthy childhood preceding sick adulthood, feeling misunderstood, lack of clarity until adulthood, sharing of resources, poor school functioning, isolation/poor social supports, and coping mechanisms. CONCLUSION: There are unique benefits and insights that can be used by investigators who collaborate with patient organizations as a means of better understanding ME/CFS illness severity, presentation, and lived experiences. Show more

Keywords: Chronic fatigue syndrome, myalgic encephalomyelitis, web blog, qualitative research

DOI: 10.3233/WOR-220484

Citation: Work, vol. 74, no. 4, pp. 1241-1251, 2023

Authors: Sirotiak, Zoe

Article Type: Research Article

Abstract:  Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic, debilitating health condition characterized by overwhelming fatigue and post-exertional malaise, or exacerbation of symptoms following physical, mental, or emotional exertion. ME/CFS often impacts every aspect of an individual’s life, and one’s new reality may be much different from the daily life experienced before the onset of the condition. Though the long-term effects of COVID-19 have brought increased attention to chronic fatigue and related disorders, ME/CFS is still vastly understudied and frequently misunderstood. People with ME/CFS are often passed between various healthcare providers as evidence-based treatments remain scarce. These patients are sometimes sent …to rehabilitation professionals, who often lack appropriate education and experience with this patient population. This article describes the experience of a young woman and physical therapist with ME/CFS following COVID-19 infection, as well as potential implications for rehabilitation professionals and those who care for those with this condition. Show more

Keywords: Myalgic encephalomyelitis, postviral fatigue syndrome, PASC, long COVID, rehabilitation

DOI: 10.3233/WOR-220487

Citation: Work, vol. 74, no. 4, pp. 1253-1259, 2023