Clinically accessible tools for documenting the impact of orthostatic intolerance on symptoms and function in ME/CFS

et al. 2020

Preprint

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Background Approximately 2.5 million people in the U.S. suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This disease negatively impacts patients’ ability to function, often resulting in difficulty maintaining employment, sustaining financial independence, engaging socially with others, and in particularly severe cases, consistently and adequately performing activities of daily living. The focus of this research was to develop a sensor-based method to measure upright activity defined as time with feet on the floor and referred to as UpTime, as an indicator of ME/CFS disease severity.Methods A commercially available inertial measurement unit (IMU), the Shimmer, was selected for this research. A Kalman filter was used to convert IMU data collected by the Shimmer to angle estimates. Angle estimate accuracy was confirmed by comparison to a motion capture system. Leg angle estimates were then converted to personalized daily UpTime scores using a critical angle of 39º from vertical to differentiate between upright (feet on the floor) and not upright. A six-day, case-control study with 15 subjects (five healthy controls, five moderate-level ME/CFS, and five severe-level ME/CFS) was conducted to determine the utility of UpTime for assessing disease severity.Results UpTime was found to be a significant measure of ME/CFS disease severity. Severely ill ME/CFS patients spend less than 20% of each day with feet on the floor. Moderately ill ME/CFS patients spend between 20–30% of each day with feet on the floor. Healthy controls have greater than 30% UpTime. IMU-measured UpTime was more precise than self-reported hours of upright activity which were over-estimated by patients.Conclusions UpTime is an accurate and objective measure of upright activity, a measure that can be used to assess disease severity in ME/CFS patients. Due to its ability to accurately monitor upright activity, UpTime can also be used as a reliable endpoint for evaluating ME/CFS treatment efficacy. Future studies with larger samples and extended data collection periods are required to fully confirm the use of UpTime as a measure of disease severity in ME/CFS. With the added perspective of large-scale studies, this sensor-based platform could provide a recovery path for individuals struggling with ME/CFS.

Section: _________________________________________________________mentioning

confidence: 73%

Accurate and Objective Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Disease Severity with a Wearable Sensor

Palombo

Campos

et al. 2020

Preprint

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“…This observation led us to explore which ME/CFS symptoms were associated with upright activity. Preliminary results revealed that patients with less than 4 HUA over a 24-hour period had significantly worse OI symptoms (<0.001) and significantly greater interference with walking and standing (<0.001) compared to age and sex matched healthy controls [5]. Further, a subset of our clinic patients can increase their HUA and report symptom improvement with OI symptom treatment.…”

Section: Background _________________________________________________mentioning

confidence: 73%

“…While our understanding of the etiology of ME/CFS is currently incomplete, studies have shown that the disease commonly occurs following viral infection and other acutely stressful events and impacting women more frequently than men [3]. A recent upsurge in ME/CFS research has led to an understanding of the disease's core symptoms: (1) fatigue impairing physical function, (2) post-exertional malaise (PEM), (3) unrefreshing sleep, (4) cognitive impairment, and (5) orthostatic intolerance (OI) [3]. While the scientific community's understanding of ME/CFS is continuously improving there are no objective diagnostics markers or FDA-approved treatments.…”

Section: Background _________________________________________________mentioning

confidence: 99%

Accurate and Objective Determination of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Disease Severity with a Wearable Sensor

Palombo

Campos

et al. 2020

Preprint

Self Cite

Background Approximately 2.5 million people in the U.S. suffer from myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This disease negatively impacts patients’ ability to function, often resulting in difficulty maintaining employment, sustaining financial independence, engaging socially with others, and in particularly severe cases, consistently and adequately performing activities of daily living. The focus of this research was to develop a sensor-based method to measure upright activity defined as time with feet on the floor and referred to as UpTime, as an indicator of ME/CFS disease severity. Methods A commercially available inertial measurement unit (IMU), the Shimmer, was selected for this research. A Kalman filter was used to convert IMU data collected by the Shimmer to angle estimates. Angle estimate accuracy was confirmed by comparison to a motion capture system. Leg angle estimates were then converted to personalized daily UpTime scores using a critical angle of 39º from vertical to differentiate between upright (feet on the floor) and not upright. A six-day, case-control study with 15 subjects (five healthy controls, five moderate-level ME/CFS, and five severe-level ME/CFS) was conducted to determine the utility of UpTime for assessing disease severity. Results UpTime was found to be a significant measure of ME/CFS disease severity. Severely ill ME/CFS patients spend less than 20% of each day with feet on the floor. Moderately ill ME/CFS patients spend between 20-30% of each day with feet on the floor. Healthy controls have greater than 30% UpTime. IMU-measured UpTime was more precise than self-reported hours of upright activity which were over-estimated by patients. Conclusions UpTime is an accurate and objective measure of upright activity, a measure that can be used to assess disease severity in ME/CFS patients. Due to its ability to accurately monitor upright activity, UpTime can also be used as a reliable endpoint for evaluating ME/CFS treatment efficacy. Future studies with larger samples and extended data collection periods are required to fully confirm the use of UpTime as a measure of disease severity in ME/CFS. With the added perspective of large-scale studies, this sensor-based platform could provide a recovery path for individuals struggling with ME/CFS.

“…Our clinical observations of hundreds of ME/CFS patients indicate that less time in an upright posture with feet on the floor over a 24-h period is associated with severe illness symptoms and disability. Patients with <5 h of upright activity (with feet on the floor) were more likely to be home or bedbound and unemployed compared to patients with ≥5 h of upright activity [8].…”

Section: Introductionmentioning

confidence: 98%

Dissecting the nature of post-exertional malaise

Hartle

Bateman

Fatigue: Biomedicine, Health & Behavior

2021

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Background: Post-exertional malaise (PEM) is a defining characteristic of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) but there is insufficient research dissecting the nature of PEM from the patients' perspective. Methods: A PEM questionnaire administered to 150 ME/CFS patients. It included open-ended questions about triggers, experiences, recovery, and prevention. Responses were re-coded into concise, representative topics. Chi-Square tests of independence were then used to test for differences and relationships between duration of ME/CFS illness (<4 years and >10 years), PEM onset and duration, and gender with PEM trigger, experience, recovery, and prevention. Results: Physical exertion was the most common trigger of PEM. The onset of PEM occurred within minutes after physical exertion compared to within hours after cognitive exertion (<0.05). ME/ CFS patients sick for <4 years reported stress as a trigger significantly more often than those sick for >10 years (<0.001). ME/CFS patients sick for <4 years experienced more orthostatic symptoms during PEM than those sick for >10 years. ME/CFS patients sick for >10 years reported using medications to recover from PEM significantly more that those sick for <4 years (<0.01). Pacing and avoiding specific triggers were common approaches to prevent PEM. Conclusions: There are differences in PEM triggers, experiences and recovery based on duration of illness. Asking about PEM is important for diagnosis and to understand how to manage PEM. Given that PEM occurs more quickly after physical versus cognitive exertion, these results should instigate research on the relationship of upright posture, hypoperfusion and PEM.