activity levels – Page 2 – American ME and CFS Society

Experiences of daily activity in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their implications for rehabilitation programmes

Abstract:

PURPOSE: Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis (CFS/ME), has a significant impact upon daily functioning. Most recommended treatments aim to alter activity patterns based upon assumptions of activity avoidance. However, as there is limited research on the experience of activity and occupational beliefs in people with CFS/ME, this study took a qualitative approach to understand the meaning of activity in people with this disabling condition.

METHOD: This study applied a social constructivist grounded theory methodology. Semi-structured interviews took place with 14 participants attending a Specialist CFS/ME Service in England.

FINDINGS: The emergent themes described a premorbid state of constant action with difficulty stopping an activity once it had commenced. When this pattern was interrupted by illness, participants attempted to maintain their previous level of occupational engagement. Negative associations and emotions were described in response to the concept of doing nothing or limited activity. A recurring cycle was reported of increasing activity levels when symptoms improved, followed by post exertional symptoms.

CONCLUSIONS: Consequently, participants’ beliefs about concepts of both activity and inactivity need to be considered within the application of rehabilitation programmes for CFS/ME that aim to modify activity related behaviours.

IMPLICATIONS FOR REHABILITATION: Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is commonly treated in the UK using activity modification. In this small qualitative study, patients expressed negative feelings and beliefs towards the concept of doing nothing and therefore sought to push their activity levels when this was available, leading to recurring cycles of symptoms and activity. Rehabilitation programmes need to consider how people with CFS/ME engaged with activity and inactivity before the condition and how this may impact upon engagement with activity-based rehabilitation programmes.

Source: Pemberton S, Cox DL. Experiences of daily activity in chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and their implications for rehabilitation programmes. Disabil Rehabil. 2014;36(21):1790-7. doi: 10.3109/09638288.2013.874503. Epub 2013 Dec 27. https://www.ncbi.nlm.nih.gov/pubmed/24369769

The process of cognitive behaviour therapy for chronic fatigue syndrome: which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue?

Abstract:

OBJECTIVE: Cognitive behaviour therapy (CBT) can significantly reduce fatigue in chronic fatigue syndrome (CFS), but little is known about the process of change taking place during CBT. Based on a recent treatment model (Wiborg et al. J Psych Res 2012), we examined how (changes in) cognitions and behaviour are related to the decrease in fatigue.

METHODS: We included 183 patients meeting the US Centers for Disease Control criteria for CFS, aged 18 to 65 years, starting CBT. We measured fatigue and possible process variables before treatment; after 6, 12 and 18 weeks; and after treatment. Possible process variables were sense of control over fatigue, focusing on symptoms, self-reported physical functioning, perceived physical activity and objective (actigraphic) physical activity. We built multiple regression models, explaining levels of fatigue during therapy by (changes in) proposed process variables.

RESULTS: We observed large individual variation in the patterns of change in fatigue and process variables during CBT for CFS. Increases in the sense of control over fatigue, perceived activity and self-reported physical functioning, and decreases in focusing on symptoms explained 20 to 46% of the variance in fatigue. An increase in objective activity was not a process variable.

CONCLUSION: A change in cognitive factors seems to be related to the decrease in fatigue during CBT for CFS. The pattern of change varies considerably between patients, but changes in process variables and fatigue occur mostly in the same period.

Source: Heins MJ, Knoop H, Burk WJ, Bleijenberg G. The process of cognitive behaviour therapy for chronic fatigue syndrome: which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue? J Psychosom Res. 2013 Sep;75(3):235-41. doi: 10.1016/j.jpsychores.2013.06.034. Epub 2013 Jul 19. http://www.jpsychores.com/article/S0022-3999(13)00266-3/fulltext (Full article)

Sub-typing daily fatigue progression in chronic fatigue syndrome

Abstract:

BACKGROUND: Activity logs involve patients writing down their activities and symptoms over 1 or more days. Aims This study sought to classify daily fatigue patterns among patients with chronic fatigue syndrome (CFS) using activity logs.

METHOD: Fatigue intensity was self-reported every 30 min in a sample of 90 patients with CFS over 1 day. A cluster analysis using fatigue intensity, variability and slope was conducted.

RESULTS: Three clusters emerged involving patients with different trajectories. One group evidenced high fatigue intensity, low variability, and fatigue intensity stayed the same over time. A second group had moderate fatigue intensity, high variability, and fatigue intensity decreased over time. A third group had moderate fatigue intensity, high variability, but fatigue intensity increased over time. The three clusters of patients differed on measures of actigraphy, pain and immune functioning.

CONCLUSIONS: Activity logs can provide investigators and clinicians with valuable sources of data for understanding patterns of fatigue and activity among patients with CFS.

Source: Jason LA, Brown MM. Sub-typing daily fatigue progression in chronic fatigue syndrome. J Ment Health. 2013 Feb;22(1):4-11. doi: 10.3109/09638237.2012.670879. Epub 2012 May 1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3889482/ (Full article)

Kinesiophobia, catastrophizing and anticipated symptoms before stair climbing in chronic fatigue syndrome: an experimental study

Abstract:

PURPOSE: Kinesiophobia and catastrophizing are frequent among people with chronic fatigue syndrome (CFS). This study was aimed at examining (1) whether kinesiophobia, anticipated symptoms and fatigue catastrophizing are related to stair climbing performance in people with CFS; and (2) whether kinesiophobia and fatigue catastrophizing are related to daily physical activity in CFS.

METHOD: Patients with CFS filled in a set of questionnaires, performed a physical demanding task (two floors stair of climbing and descending) with pre-test and post-test heart rate monitoring and immediate post-stair climbing symptom assessment. Real-time activity monitoring was used between the baseline and second assessment day (7 days later).

RESULTS: Kinesiophobia and fatigue catastrophizing were strongly related (ρ = 0.62 and 0.67, respectively) to poorer stair climbing performance (i.e. more time required to complete the threatening activity). Kinesiophobia and fatigue catastrophizing were unrelated to the amount of physical activity on the first day following stair climbing or during the seven subsequent days.

CONCLUSION: These findings underscore the importance of kinesiophobia and fatigue catastrophizing for performing physical demanding tasks in everyday life of people with CFS, but refute a cardinal role for kinesiophobia and fatigue catastrophizing in determining daily physical activity level in these patients.

Source: Nijs J, Meeus M, Heins M, Knoop H, Moorkens G, Bleijenberg G. Kinesiophobia, catastrophizing and anticipated symptoms before stair climbing in chronic fatigue syndrome: an experimental study. Disabil Rehabil. 2012;34(15):1299-305. doi: 10.3109/09638288.2011.641661. Epub 2012 Feb 12. https://www.ncbi.nlm.nih.gov/pubmed/22324510

The role of changes in activity as a function of perceived available and expended energy in nonpharmacological treatment outcomes for ME/CFS

Abstract:

Nonpharmacological interventions for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often emphasize gradual increases in activity to promote improvement in physical functioning and fatigue. The energy envelope theory may provide a framework for understanding the relationship between changes in activity level and outcomes for patients with ME/CFS. This study examined the relationship between energy envelope and changes in activity after nonpharmacological interventions in a sample of 44 adults with ME/CFS.

Results showed that those who were within their energy envelope before treatment showed more improvement in physical functioning and fatigue compared with those outside of their energy envelope. These findings suggest that an assessment of perceived available and expended energy could help guide the development of individualized nonpharmacological interventions for people with ME/CFS.

Source: Brown M, Khorana N, Jason LA. The role of changes in activity as a function of perceived available and expended energy in nonpharmacological treatment outcomes for ME/CFS. J Clin Psychol. 2011 Mar;67(3):253-60. doi: 10.1002/jclp.20744. Epub 2010 Oct 25. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3164291/ (Full article)

Tired of being inactive: a systematic literature review of physical activity, physiological exercise capacity and muscle strength in patients with chronic fatigue syndrome

Abstract:

A systematic review was undertaken to examine whether patients with chronic fatigue syndrome (CFS) differ from healthy sedentary controls in physiological exercise capacity, physical activity level and muscle strength. From the available literature, it can be concluded that patients with CFS perform less physical activity during daily life, and have less peak isometric muscle strength compared to healthy sedentary control subjects. Conflicting data in relation to physiological exercise capacity of patients with CFS have been reported, but the weighted available evidence points towards a reduced physiological exercise capacity in CFS. Future studies should use a wash-out period for medication use, blinded assessments, a priori power calculation and a sedentary control group comparable for age, gender, body weight, body length and current physical activity level.

Source: Nijs J, Aelbrecht S, Meeus M, Van Oosterwijck J, Zinzen E, Clarys P. Tired of being inactive: a systematic literature review of physical activity, physiological exercise capacity and muscle strength in patients with chronic fatigue syndrome. Disabil Rehabil. 2011;33(17-18):1493-500. doi: 10.3109/09638288.2010.541543. Epub 2010 Dec 20. https://www.ncbi.nlm.nih.gov/pubmed/21166613

Nitric oxide concentrations are normal and unrelated to activity level in chronic fatigue syndrome: a case-control study

Abstract:

AIM: since patients with chronic fatigue syndrome (CFS) often present elevated levels of nitric oxide (NO) and low levels of physical activity, this study aimed at revealing possible correlations between NO concentration and physical activity.

PATIENTS AND METHODS: thirty CFS patients and 29 age- and gender-matched sedentary controls wore an accelerometer for one week and underwent venous blood sampling at the beginning and the end of the week.

RESULTS: CFS patients were significantly less active (p=0.001), but no significant differences in the amounts of NO (p=0.464 and 0.569) or interaction between NO levels and activity levels in either the CFS patients or controls were revealed.

CONCLUSION: these results provide further evidence for reduced activity levels in CFS patients, but refute there being any interaction between the amount of blood NO and activity level in both groups. The blood NO was neither predictive of, nor dependent on the activity level in CFS.

Source: Meeus M, VAN Eupen I, Hondequin J, DE Hauwere L, Kos D, Nijs J. Nitric oxide concentrations are normal and unrelated to activity level in chronic fatigue syndrome: a case-control study. In Vivo. 2010 Nov-Dec;24(6):865-9. https://www.ncbi.nlm.nih.gov/pubmed/21164046

Postinfectious fatigue in adolescents and physical activity

Abstract:

OBJECTIVE: To compare adolescents who do and do not recover from acute infectious mononucleosis in terms of fatigue severity and activity levels before, during, and in the 2 years following infection.

DESIGN: Prospective case-control study.

SETTING: The baseline and 12- and 24-month evaluations occurred in the subjects’ homes. The 6-month outpatient visit occurred at Children’s Memorial Hospital in Chicago, Illinois.

PARTICIPANTS: Three hundred one adolescents (aged 12-18 years) with acute infectious mononucleosis.

MAIN EXPOSURES: All participants were evaluated at baseline (during active infection). Six months following infection, 39 of them met criteria for chronic fatigue syndrome. These subjects were matched by sex and Tanner stage to 39 randomly selected screened-negative subjects. Both groups were reevaluated at 12- and 24-month follow-ups.

OUTCOME MEASURES: Scores from the Fatigue Severity Scale and the Modifiable Activity Questionnaire.

RESULTS: For both groups, physical activity levels declined and sleep increased as a result of having mononucleosis. Compared with their matched controls, adolescents with chronic fatigue syndrome reported significantly higher levels of fatigue at all points and spent significantly more time sleeping during the day 6 and 12 months following infection. The 2 groups did not differ significantly in terms of physical activity levels before, during, or after infection. There was a consistent trend for decreased physical activity in the chronic fatigue syndrome group.

CONCLUSIONS: Adolescents with chronic fatigue syndrome appear to be pushing themselves in an attempt to maintain similar activity levels as their peers, but paying for it in terms of fatigue severity and an increased need for sleep, particularly during the day.

Comment in: Chronic fatigue syndrome in adolescence: where to from here? [Arch Pediatr Adolesc Med. 2010]

Source: Huang Y, Katz BZ, Mears C, Kielhofner GW, Taylor R. Postinfectious fatigue in adolescents and physical activity. Arch Pediatr Adolesc Med. 2010 Sep;164(9):803-9. doi: 10.1001/archpediatrics.2010.144. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3050621/ (Full article)

Finding the right balance of physical activity: a focus group study about experiences among patients with chronic fatigue syndrome

Abstract:

OBJECTIVE: To explore contexts of experiences of physical activity perceived as beneficial or harmful for CFS patients.

METHODS: A qualitative study with empirical data from two focus groups with purposive sampling. Mean age was 50, two of ten participants were male, and social demographics varied. Participants were invited to share stories of good as well as bad experiences concerning physical activity. Data were analysed with systematic text condensation.

RESULTS: Participants were not averse to physical activity, but specific preconditions would determine how the activity was perceived. Physical activity was experienced as helpful and enjoyable, especially related to leisure activities where flexible and individual adaptation was feasible. Non-customized activity may precipitate set-backs giving patients the impression of losing control and being betrayed by their bodies. Strategies to review energy usage in daily life could adjust expectations, diminish stress load and assist in approaching a more appropriate priority and balance.

CONCLUSION: Self-management, body awareness and physical activity of choice combined with facilitation and advice from health care professionals is essential to achieve a positive outcome.

PRACTICE IMPLICATIONS: Exercise programmes should be adapted, paced, and self-managed in accordance with personal preferences and activity levels to be beneficial and empowering for CFS patients.

Source: Larun L, Malterud K. Finding the right balance of physical activity: a focus group study about experiences among patients with chronic fatigue syndrome. Patient Educ Couns. 2011 May;83(2):222-6. doi: 10.1016/j.pec.2010.05.027. Epub 2010 Jun 26. https://www.ncbi.nlm.nih.gov/pubmed/20580520

Is the International Physical Activity Questionnaire-short form (IPAQ-SF) valid for assessing physical activity in Chronic Fatigue Syndrome?

Abstract:

PURPOSE: To evaluate the criterion validity and internal consistency of the International Physical Activity Questionnaire-short form (IPAQ-sf) in Chronic Fatigue Syndrome (CFS) patients.

METHOD: Fifty-six CFS patients completed the IPAQ-sf after they wore a tri-axial accelerometer and filled out activity diaries during 1 week. Spearman rank correlation coefficients and Cronbach’s Alpha were calculated.

RESULTS: The IPAQ-sf correlated significantly with the energy expenditure and Metabolic Equivalents (METs) minutes spent moderately to vigorously active following the activity diary and accelerometer. These correlation coefficients were however low (r varying between 0.282 and 0.426) and rather irrelevant, since CFS patients hardly reach moderate or vigorous activity levels. Internal consistency between the three subitems used for the total score of the IPAQ-sf was 0.337.

CONCLUSION: The observed associations between the IPAQ-sf data and the data obtained from the accelerometer (gold standard) and the diaries were too low to be in support of the use of the IPAQ-sf in patients with CFS. The IPAQ-sf does not seem an appropriate tool to assess physical activity in CFS patients. Further study is required to seek for a valid, practical and affordable tool.

Source: Meeus M, Van Eupen I, Willems J, Kos D, Nijs J. Is the International Physical Activity Questionnaire-short form (IPAQ-SF) valid for assessing physical activity in Chronic Fatigue Syndrome? Disabil Rehabil. 2011;33(1):9-16. doi: 10.3109/09638288.2010.483307. Epub 2010 May 6. https://www.ncbi.nlm.nih.gov/pubmed/20446802