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Price: EUR 250.00Authors: Jacobs, Karen
Article Type: Editorial
DOI: 10.3233/WOR-203167
Citation: Work, vol. 66, no. 2, pp. 243-244, 2020
Authors: Mooney, Amy
Article Type: Editorial
DOI: 10.3233/WOR-203179
Citation: Work, vol. 66, no. 2, pp. 245-246, 2020
Authors: Davenport, Todd E. | Stevens, Staci R. | Stevens, Jared | Snell, Christopher R. | Van Ness, J. Mark
Article Type: Research Article
Abstract: BACKGROUND: Diminished cardiopulmonary exercise test (CPET) performance indicates the physiological basis for reduced capacity for activities of daily living and work. Thus, it may be a biomarker for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). OBJECTIVE: To determine statistical properties of cardiac, pulmonary, and metabolic measurements obtained during CPET in people with ME/CFS. METHODS: Fifty-one females with ME/CFS and 10 sedentary females with similar age and body mass received cardiac, pulmonary, and metabolic measurements during 2 CPETs separated by 24 hours. Two-way analysis of variance and effect size calculations (Cohen’s d ) were used to assess the magnitude …and statistical significance of differences in measurements between groups. Reliability of CPET measurements was estimated using intraclass correlation coefficients (ICC2,1 ). Responsiveness of CPET measurements was assessed using minimum detectable change outside the 95% confidence interval (MDC95 ) and coefficients of variation (CoV). RESULTS: CPET measurements demonstrated moderate to high reliability for individuals with ME/CFS. Comparing subjects with ME/CFS and control subjects yielded moderate to large effect sizes on all CPET measurements. MDC95 for all individuals with ME/CFS generally exceeded control subjects and CoVs for CPET measurements were comparable between groups. CONCLUSIONS: CPET measurements demonstrate adequate responsiveness and reproducibility for research and clinical applications. Show more
Keywords: Tests and measures, reliability, exercise testing, Myalgic Encephalomyelitis, Chronic Fatigue Syndrome
DOI: 10.3233/WOR-203170
Citation: Work, vol. 66, no. 2, pp. 247-256, 2020
Authors: Lee, Jihyun | Wall, Pelle | Kimler, Chris | Bateman, Lucinda | Vernon, Suzanne D.
Article Type: Research Article
Abstract: BACKGROUND: Clinical observations have indicated that hours of upright activity (HUA) reported by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients correlated with orthostatic symptoms and impaired physical function. This study examined the relationship between HUA and orthostatic intolerance (OI). METHODS: Twenty-five female ME/CFS subjects and 25 age and race matched female healthy controls (HCs) were enrolled. Subjects reported HUA (defined as hours per day spent with feet on the floor) and completed questionnaires to assess the impact of OI on daily activities and symptoms. ME/CFS patients were categorized into those with <5 HUA and ≥5 HUA and analyzed by …employment status. Data analysis used one-way ANOVA. RESULTS: ME/CFS patients had fewer HUA, worse symptoms and greater interference with daily activities due to OI than HCs. The <5 HUA ME/CFS subjects had more severe OI related symptoms than ≥5 HUA ME/CFS subjects even though OI interfered with daily activities similarly. Only 33% of ME/CFS subjects were employed and all were ≥5 HUA ME/CFS subjects with an average HUA of 8. CONCLUSIONS: ME/CFS subjects experienced more frequent and severe OI symptoms, higher interference with daily activities, and reduced ability to work than HCs. Reported HUA and assessment of OI using standardized instruments may be useful clinical tools for physicians in the diagnosis, treatment and management of ME/CFS patients. Show more
Keywords: ME/CFS, hours of upright activity, orthostatic intolerance, impaired physical function
DOI: 10.3233/WOR-203169
Citation: Work, vol. 66, no. 2, pp. 257-263, 2020
Authors: Mateo, Lariel J. | Chu, Lily | Stevens, Staci | Stevens, Jared | Snell, Christopher R. | Davenport, Todd | VanNess, J. Mark
Article Type: Research Article
Abstract: BACKGROUND: Post-exertional malaise (PEM) is an exacerbation of symptoms that leads to a reduction in functionality. Recognition of PEM is important for the diagnosis and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). OBJECTIVE: Symptoms following cardiopulmonary exercise testing were compared between ME/CFS patients and healthy controls. METHODS: Open-ended questionnaires were provided to subjects following two maximal exercise tests, 24 hours apart. Subjects evaluated how they felt at five time points. Responses were classified into 19 symptom categories. RESULTS: ME/CFS subjects (n = 49) reported an average of 14±7 symptoms compared to 4±3 by controls (n … = 10). During the seven days afterwards, ME/CFS subjects reported 4±3 symptoms. None were reported by controls. Fatigue, cognitive dysfunction, and sleep problems were reported with the greatest frequency. ME/CFS patients reported more symptom categories at higher frequencies than controls. The largest differences were observed in cognitive dysfunction, decrease in function, and positive feelings. CONCLUSIONS: A standardized exertional stimulus produced prolonged, diverse symptoms in ME/CFS subjects. This provides clues to the underlying pathophysiology of ME/CFS, leading to improved diagnosis and treatment. Show more
Keywords: Post-exertional malaise, cardiopulmonary exercise test, symptoms, ME/CFS
DOI: 10.3233/WOR-203168
Citation: Work, vol. 66, no. 2, pp. 265-275, 2020
Authors: Mirin, Arthur A. | Dimmock, Mary E. | Jason, Leonard A.
Article Type: Research Article
Abstract: BACKGROUND: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating, chronic, multisystem disease that affects an estimated 1 to 2.5 million Americans. It has no widely accepted biomarkers and no FDA-approved treatment. ME/CFS has traditionally been one of the lowest funded diseases by the United States National Institutes of Health (NIH). OBJECTIVES: We provide here an update to our 2016 article, which estimated the disease burden of ME/CFS in the United States in 2013 and its relation to NIH’s 2015 analysis of research funding and disease burden. This update incorporates more recent burden data from 2015 and funding data …from 2017. METHODS: We perform a regression analysis on funding versus disease burden to determine 2017 funding levels that would be commensurate with burden. Burden figures for 2017 are estimated using population-based extrapolations of earlier data. RESULTS: We find the disease burden of ME/CFS is double that of HIV/AIDS and over half that of breast cancer. We also find that ME/CFS is more underfunded with respect to burden than any disease in NIH’s analysis of funding and disease burden, with ME/CFS receiving roughly 7% of that commensurate with disease burden. CONCLUSIONS: To be commensurate with disease burden, NIH funding would need to increase roughly 14-fold. Show more
Keywords: Chronic Fatigue Syndrome, disease burden, burden-commensurate funding
DOI: 10.3233/WOR-203173
Citation: Work, vol. 66, no. 2, pp. 277-282, 2020
Authors: Vink, Mark | Vink-Niese, Friso
Article Type: Research Article
Abstract: BACKGROUND: Cochrane recently amended its exercise review for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in response to an official complaint. OBJECTIVE: To determine if the amended review has addressed the concerns raised about the previous review and if exercise is an effective treatment that restores the ability to work in ME/CFS. METHOD: The authors reviewed the amended Cochrane exercise review and the eight trials in it by paying particular interest to the objective outcomes. We also summarised the recently published review of work rehabilitation and medical retirement for ME/CFS. RESULTS: The Cochrane review concluded that …graded exercise therapy (GET) improves fatigue at the end of treatment compared to no-treatment. However, the review did not consider the unreliability of subjective outcomes in non-blinded trials, the objective outcomes which showed that GET is not effective, or the serious flaws of the studies included in the review. These flaws included badly matched control groups, relying on an unreliable fatigue instrument as primary outcome, outcome switching, p-hacking, ignoring evidence of harms, etc. The review did also not take into account that GET does not restore the ability to work. CONCLUSION: GET not only fails to objectively improve function significantly or to restore the ability to work, but it is also detrimental to the health of≥50% of patients, according to a multitude of patient surveys. Consequently, it should not be recommended. Show more
Keywords: Bias, occupational health, patient safety, return to work, work rehabilitation
DOI: 10.3233/WOR-203174
Citation: Work, vol. 66, no. 2, pp. 283-308, 2020
Authors: Lopez-Majano, Denise
Article Type: Research Article
Abstract: Myalgic Encephalomyelitis (ME) is a complex, chronic, disabling, multi-system disease with no FDA-approved treatments. ME greatly impacts quality of life (QoL) with studies showing that people with ME often have worse quality of life than people with sickle cell anemia and cystic fibrosis, among other chronic diseases. People with ME frequently have comorbidities, which, if treated, could improve quality of life. However, the pervasive impact of ME makes treatment of comorbidities difficult. When trying to treat comorbidities it is therefore important for rehabilitation specialists to understand the impact of ME on day-to-day life in order to avoid treatment-related harms or …exacerbation of ME symptoms. This article details the lived experience of one family in which both siblings have ME and comorbidities. Show more
Keywords: Myalgic Encephalomyelitis, postural orthostatic tachycardia syndrome, joint hypermobility syndrome, comorbidities, management
DOI: 10.3233/WOR-203175
Citation: Work, vol. 66, no. 2, pp. 309-313, 2020
Authors: Chu, Lily | Fuentes, Lynn R. | Marshall, Olena M. | Mirin, Arthur A.
Article Type: Research Article
Abstract: BACKGROUND: Today, 24% of college and university students are affected by a chronic health condition or disability. Existing support programs, including disability services, within colleges and universities are often unaccustomed to addressing the fluctuating and unpredictable changes in health and functioning faced by students with severe chronic illnesses. This situation is especially difficult for students with lesser-known, invisible diseases like Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a complex disease affecting up to 2.5 million Americans which often begins in late adolescence or young adulthood. OBJECTIVE: Educate occupational therapists (OTs) about ME/CFS and steps they can take to assist students. …METHODS: This work is based on a review of the scientific literature and our collective professional/ personal experiences. RESULTS: ME/CFS’ effects on multiple organ systems combined with the unusual symptom of post-exertional malaise frequently and substantially decrease function. Currently, no effective disease-modifying treatments have been established. Nevertheless, OTs can help student maximize their participation in university life by identifying potential obstacles, formulating practical solutions and negotiating with their institutions to implement reasonable, environmental accommodations. CONCLUSIONS: Through understanding this disease, being aware of possible support options, and recommending them as appropriate, OTs are in unique position to greatly improve these students’ lives. Show more
Keywords: Chronic illness, disability, systemic exertion intolerance disease (SEID), postsecondary education, occupational therapy, ME/CFS
DOI: 10.3233/WOR-203176
Citation: Work, vol. 66, no. 2, pp. 315-326, 2020
Authors: Tokunaga, Keli | Sung, Alexander P. | Tang, Jennifer J-J | Guglielmo, Michael J. | Smith-Gagen, Julie | Bateman, Lucinda | Redelman, Doug D. | Hudig, Dorothy
Article Type: Research Article
Abstract: BACKGROUND: The search for a biomarker specific for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been long, arduous and, to date, unsuccessful. Researchers need to consider their expenditures on each new candidate biomarker. In a previous study of antibody-dependent cell-mediated cytotoxicity (ADCC) by natural killer lymphocytes, we found lower ADCC for ME/CFS patients vs. unrelated donors but ruled against low ADCC as a biomarker because of similar ADCC for patients vs. their family members without ME/CFS. OBJECTIVE: We applied inclusion of family members without ME/CFS, from families with multiple CFS patients, as a second non-ME/CFS control group …in order to re-examine inflammation in ME/CFS. METHOD: Total and CD16A-positive ‘non-classical’ anti-inflammatory monocytes were monitored. RESULTS: Non-classical monocytes were elevated for patients vs. unrelated healthy donors but these differences were insignificant between patients vs. unaffected family members. CONCLUSIONS: Inclusion of family members ruled against biomarker considerations for the monocytes characterized. These pilot findings for the non-classical monocytes are novel in the field of ME/CFS. We recommend that occupational therapists advocate and explain to family members without ME/CFS the need for the family members’ participation as a second set of controls in pilot studies to rapidly eliminate false biomarkers, optimize patient participation, and save researchers’ labor. Show more
Keywords: Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, ADCC, antibody-dependent cell-mediated cytotoxicity, non-classical monocytes, biomarker
DOI: 10.3233/WOR-203177
Citation: Work, vol. 66, no. 2, pp. 327-337, 2020
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