Tag: pacing

Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients

Abstract:

Introduction: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a disease with no validated specific and sensitive biomarker, and no standard approved treatment. In this observational study with no intervention, participants used a Fitbit activity tracker. The aims were to explore natural symptom variation, feasibility of continuous activity monitoring, and to compare activity data with patient reported outcome measures (PROMs).

Materials and methods: In this pilot study, 27 patients with mild to severe ME/CFS, of mean age 42.3 years, used the Fitbit Charge 3 continuously for six months. Patients wore a SenseWear activity bracelet for 7 days at baseline, at 3 and 6 months. At baseline and follow-up they completed the Short Form 36 Health Survey (SF-36) and the DePaul Symptom Questionnaire-Short Form (DSQ-SF).

Results: The mean number of steps per day decreased with increasing ME/CFS severity; mild 5566, moderate 4991 and severe 1998. The day-by-day variation was mean 47% (range 25%-79%). Mean steps per day increased from the first to the second three-month period, 4341 vs 4781 steps, p = 0.022. The maximum differences in outcome measures between 4-week periods (highest vs lowest), were more evident in a group of eight patients with milder disease (baseline SF-36 PF > 50 or DSQ-SF < 55) as compared to 19 patients with higher symptom burden (SF-36 PF < 50 and DSQ-SF > 55), for SF-36 PF raw scores: 16.9 vs 3.4 points, and for steps per day: 958 versus 479 steps. The correlations between steps per day and self-reported SF-36 Physical function, SF-36 Social function, and DSQ-SF were significant. Fitbit recorded significantly higher number of steps than SenseWear. Resting heart rates were stable during six months.

Conclusion: Continuous activity registration with Fitbit Charge 3 trackers is feasible and useful in studies with ME/CFS patients to monitor steps and resting heart rate, in addition to self-reported outcome measures.

Source: Rekeland IG, Sørland K, Bruland O, Risa K, Alme K, Dahl O, Tronstad KJ, Mella O, Fluge Ø. Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients. PLoS One. 2022 Sep 19;17(9):e0274472. doi: 10.1371/journal.pone.0274472. PMID: 36121803. https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0274472 (Full text)

Non-improvement in chronic fatigue syndrome: relation to activity patterns, uplifts and hassles, and autonomic dysfunction

Abstract:

Objective: To test a model of non-improvement in chronic fatigue syndrome (CFS) utilizing self-report activity patterns (e.g., “push-crash”), uplifts and hassles, and a biological measure of cardiac autonomic function. Activity pattern impacts on symptoms and objective measures of autonomic and physical activity were also examined.

Methods: This prospective study in CFS collected all data remotely, including six months of weekly web diaries that recorded symptom ratings, activity patterns, and hassles and uplifts. In addition, six months of weekly heart monitoring and three months of daily waking actigraphy data were collected. Improvement or non-improvement status was assessed using semi-structured interviews at 6 months follow-up.

Results: 148 individuals (87.2% female) were enrolled and 12.2% were lost to follow-up. Participants reporting non-improvement (n = 92), as compared to improvement (n = 38) showed greater autonomic dysfunction (lower heart rate variability [HRV], group difference = 5.93 (SE = 2.73) ms; p = .032) and lower mean intensity of behavioral uplifts (group difference = 0.14 (SE = 0.16); p = .043), but no significant differences in any activity pattern, including push-crash, limiting activity, and healthy pacing.

Conclusions: This study provided evidence for linking patient-reported non-improvement to a biological variable indexing autonomic dysfunction and a behavioral measure indicating a deficit in psychological uplifts. These findings suggest a possible marker of illness trajectory that could potentially advance the biomedical underpinnings of CFS.

Source: Friedberg F, Adamowicz JL, Bruckenthal P, Milazzo M, Ramjan S, Quintana D. Non-improvement in chronic fatigue syndrome: relation to activity patterns, uplifts and hassles, and autonomic dysfunction. Psychosom Med. 2022 Apr 15. doi: 10.1097/PSY.0000000000001082. Epub ahead of print. PMID: 35420586. https://pubmed.ncbi.nlm.nih.gov/35420586/

Lessons from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for Long COVID Part 4: Heart Rate Monitoring to Manage Postexertional Symptom Exacerbation

The physiology underlying postexertional symptom exacerbation (PESE) is abnormal in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and likely long COVID. Activity pacing approaches appear warranted to accommodate the unusual physiological deficits of PESE.

The Rationale for Heart Rate Monitoring

Similar to people living with ME/CFS,7 people living with long COVID have reported finding activity pacing to be helpful. This idea is reflected in current safe rehabilitation guidelines for this condition.8 PESE is challenging to self-manage because of the variability in onset, duration, and nature from person to person.2,6 Social stigma associated with PESE may lead people to overexert to meet the demands of their daily tasks. This stigma may be exacerbated by people telling patients that “it’s all in their head” or they “just need to exercise.” Variability and stigma, in turn, make it difficult to identify important activity triggers in the early stages of learning to manage PESE.

PESE is characterized by aerobic system dysfunction. Pacing based on heart rate can help the patient avoid the dysfunctional aerobic system by keeping their activity intensity at a level anaerobic metabolism will dominate. Heart rate monitoring (HRM) provides an element of predictive potential for the patient to understand when their activities exceed physiological limits and eventually may result in PESE. In this post, we will discuss activity pacing to manage PESE that is based on HRM.

Source: Todd E. Davenport, Staci R. Stevens, Jared Stevens, Christopher R. Snell, J. Mark Van Ness. Lessons from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome for Long COVID Part 4: Heart Rate Monitoring to Manage Postexertional Symptom Exacerbation. Published online on February 23, 2022. https://doi.org/10.2519/jospt.blog.20220223 (Full text)

Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys

Abstract:

Cognitive behavioural therapy and graded exercise therapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome. This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey (n = 1428) and compare our findings with those from comparable patient surveys (n = 16,665), using a mix of descriptive statistics and regression analysis modelling.

Findings from analysis of primary and secondary surveys suggest that cognitive behavioural therapy is of benefit to a small percentage of patients (8%-35%), graded exercise therapy brings about large negative responses in patients (54%-74%), while pacing is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44%-82%).

Source: Geraghty K, Hann M, Kurtev S. Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. J Health Psychol. 2019 Sep;24(10):1318-1333. doi: 10.1177/1359105317726152. Epub 2017 Aug 29. PMID: 28847166. https://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full (Full text)

Fatigue and post-exertional symptom exacerbation in Covid

Long Covid rehabilitation should include educating people about resuming everyday activities conservatively: WHO

By SHAHISTHA HAQUE

Fatigue is a feeling of extreme exhaustion. One feels over tired, low level of energy and extreme urge to sleep. It is the most common symptom of long Covid. It is easily relieved by rest or sleep. It is not the result of usually difficult activity. It can limit functioning in day to day activities. It negatively impacts the quality of life.

Now talking about post-exertional symptom exacerbation (PESE), it is a disabling and often delayed exhaustion disproportionate to the effort made. It is something described as crash.
The activity that can trigger this worsening of symptoms can be something that was easily tolerated before such as a daily activity e.g., a shower, a social activity, walking, reading, writing or working at a desk, an emotionally charged conversation, being in a sensory environment e.g., loud music or flashing lights.
Many of the symptoms experienced by those living with long Covid are very similar to those of myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS).
According to WHO, long Covid rehabilitation should include educating people about resuming everyday activities conservatively, at an appropriate pace that is safe and manageable for energy levels within the limit of current symptoms and exertion should not be pushed to the point of fatigue or symptom exacerbation.
Read the rest of this article HERE.

Patients’ Experiences and Effects of Non-Pharmacological Treatment for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome – A Scoping Mixed Methods Review

Abstract:

Purpose: The EU COST Action 15111 collaboration on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) aims to assess current research and identify knowledge gaps in Europe. Presently, our purpose is to map the effects of non-pharmacological therapies (NPTs) for ME/CFS, and what patients find important in the treatment process.

Methods: A scoping mixed methods literature review of European studies identified 16 papers fulfiling our inclusion criteria. The quantitative and qualitative studies were synthesized separately in tables. Additionally, extracts from the qualitative studies were subjected to translational analysis.

Results: Effect studies addressed cognitive behavioural therapy (CBT, n = 4), multimodal rehabilitation (n = 2) and activity-pacing (n = 2). CBT reduced fatigue scores more than usual care or waiting list controls. The effects of rehabilitation and activity-pacing were inconsistent. The contents, assessment methods and effects of rehabilitation and activity pacing studies varied. For patients, health professionals’ recognition of ME/CFS and support were crucial, but they expressed ambiguous experiences of what the NPTs entail.

Conclusions: Methodological differences make comparisons across NPTs impossible, and from a patient perspective the relevance of the specific contents of NPTs are unclear. Future well-designed studies should focus on developing NPTs tailored to patients’ concerns and evaluation tools reflecting what is essential for patients.

Source: Mengshoel AM, Helland IB, Meeus M, Castro-Marrero J, Pheby D, Bolle Strand E. Patients’ experiences and effects of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome – a scoping mixed methods review. Int J Qual Stud Health Well-being. 2020;15(1):1764830. doi:10.1080/17482631.2020.1764830 https://pubmed.ncbi.nlm.nih.gov/32432991/ (Full text)

Heart Rate Thresholds to Limit Activity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients (Pacing): Comparison of Heart Rate Formulae and Measurements of the Heart Rate at the Lactic Acidosis Threshold during Cardiopulmonary Exercise Testing

Abstract:

Introduction: Based on the hypothesis that oxidative metabolism is impaired in ME/CFS, a previous study recommended a pacing self-management strategy to prevent post-exertional malaise. This strategy involved a prescription to maintain a heart rate below the anaerobic threshold during physical activities. In the absence of lactate sampling or a cardiopulmonary exercise test (CPET), the pacing self-management formula defines 55% of the age-specific predicted maximal heart rate as the heart rate at the anaerobic threshold. Thus far there has been no empiric evidence to test this self-pacing method of predicting heart rate at anaerobic threshold. The aim of this study was to compare published formula-derived heart rates at the anaerobic threshold with the actual heart rate at the lactic acidosis threshold as determined by CPET.

Methods and Results: Adults with ME/CFS who had undergone a symptom-limited CPET were eligible for this study (30 males, 60 females). We analysed males and females separately because of sex-based differences in peak oxygen consumption. From a review paper, formulae to calculate maximal predicted heart rate were used for healthy subjects. We compared the actual heart rate at the lactic acid threshold during CPET to the predicted heart rates determined by formulae. Using Bland-Altman plots, calculated bias: the mean difference between the actual CPET heart rate at the anaerobic threshold and the formula predicted heart rate across several formulae varied between -28 and 19 bpm in male ME/CFS patients. Even in formulae with a clinically acceptable bias, the limits of agreement (mean bias ± 2SD) were unacceptably high for all formulae. For female ME/CFS patients, bias varied between 6 and 23 bpm, but the limits of agreement were also unacceptably high for all formulae.

Conclusion: Formulae generated in an attempt to help those with ME/CFS exercise below the anaerobic threshold do not reliably predict actual heart rates at the lactic acidosis threshold as measured by a cardiopulmonary exercise test. Formulae based on age-dependent predicted peak heart rate multiplied by 55% have a wide age-specific variability and therefore have a limited application in clinical practice.

Source: van Campen, C. , Rowe, P. and Visser, F. (2020) Heart Rate Thresholds to Limit Activity in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patients (Pacing): Comparison of Heart Rate Formulae and Measurements of the Heart Rate at the Lactic Acidosis Threshold during Cardiopulmonary Exercise Testing. Advances in Physical Education, 10, 138-154. doi: 10.4236/ape.2020.102013. https://www.scirp.org/journal/paperinformation.aspx?paperid=100333 (Full text)

Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves

Abstract:

Objective: The Energy Envelope Theory of myalgic encephalomyelitis and chronic fatigue syndrome postulates that individuals with myalgic encephalomyelitis and chronic fatigue syndrome may experience some increase in functioning if their level of exertion consistently remains within the limits of their available energy. Findings of several studies support this theory; however, the current study is the first to explore how an individual’s initial level of available energy may influence the relation between energy envelope maintenance and level of functioning.

Method:The functioning, activity, and symptomatology of six groups of individuals with myalgic encephalomyelitis and chronic fatigue syndrome were compared. Groups were created based upon level of available energy (higher or lower) and energy envelope adherence (underextended, within, overextended).

Results: Results indicate that, as expected, individuals with myalgic encephalomyelitis and chronic fatigue syndrome who had higher available energy also had better functioning than individuals with lower available energy; however, this relation was less pronounced for individuals who were overexerting themselves.

Discussion: These results are consistent with the Energy Envelope Theory, and they suggest that overexertion was particularly impactful for individuals with higher levels of available energy.

Source: O’connor K, Sunnquist M, Nicholson L, Jason LA, Newton JL, Strand EB. Energy envelope maintenance among patients with myalgic encephalomyelitis and chronic fatigue syndrome: Implications of limited energy reserves. Chronic Illn. 2017 Jan 1:1742395317746470. doi: 10.1177/1742395317746470. [Epub ahead of print]

Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys

Abstract:

Cognitive behavioural therapy and graded exercise therapy are promoted as evidence-based treatments for myalgic encephalomyelitis/chronic fatigue syndrome. This article explores patients’ symptom responses following these treatments versus pacing therapy, an approach favoured by many sufferers. We analyse data from a large cross-sectional patient survey ( n = 1428) and compare our findings with those from comparable patient surveys ( n = 16,665), using a mix of descriptive statistics and regression analysis modelling.

Findings from analysis of primary and secondary surveys suggest that cognitive behavioural therapy is of benefit to a small percentage of patients (8%-35%), graded exercise therapy brings about large negative responses in patients (54%-74%), while pacing is the most favoured treatment with the lowest negative response rate and the highest reported benefit (44%-82%).

Source: Geraghty K, Hann M, Kurtev S.Myalgic encephalomyelitis/chronic fatigue syndrome patients’ reports of symptom changes following cognitive behavioural therapy, graded exercise therapy and pacing treatments: Analysis of a primary survey compared with secondary surveys. J Health Psychol. 2017 Aug 1:1359105317726152. doi: 10.1177/1359105317726152. [Epub ahead of print] http://journals.sagepub.com/eprint/hWSxVIBTzDtqisvafkhE/full (Full article)