Management – Page 5 – American ME and CFS Society

Deviations in daily physical activity patterns in patients with the chronic fatigue syndrome: a case control study

Abstract:

OBJECTIVES: Deviations in daily physical activity patterns may play an important role in the development and maintenance of fatigue in the chronic fatigue syndrome (CFS). The aim of this study is to gain insight into the objective daily physical activity pattern of patients with CFS in comparison with healthy controls. The secondary objective is studying the awareness in performing physical activities.

METHODS: The objective daily physical activity pattern was measured with a tri-axial accelerometer in 35 patients with CFS and in 35 age- and gender-matched healthy controls. The objective daily physical activity level and distribution of physical activities at low, medium and high intensity levels during the day were measured. Moreover, variability in performing physical activities within and between subjects was computed. Subjective ratings of self-reported daily physical activity levels were assessed at a visual analog scale.

RESULTS: CFS patients were significantly less physically active in the afternoon and evening, and spent fewer activities at high intensity levels and more at low intensity levels. Moreover, CFS patients showed more variability in their own physical activity pattern during the afternoon. The heterogeneity in the physical activity pattern between subjects within the CFS and control group did not differ. Finally, CFS patients were more aware about their daily physical activity level than healthy controls.

CONCLUSION: CFS patients showed deviations in the objectively measured daily physical activity pattern. Future research should elucidate the relation between impaired balances in daily physical activity patterns and fatigue severity in CFS.

Source: Evering RM, Tönis TM, Vollenbroek-Hutten MM. Deviations in daily physical activity patterns in patients with the chronic fatigue syndrome: a case control study. J Psychosom Res. 2011 Sep;71(3):129-35. doi: 10.1016/j.jpsychores.2011.04.004. Epub 2011 May 18. https://www.ncbi.nlm.nih.gov/pubmed/21843746

Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children [Internet]

Excerpt:

The guideline covers care provided by healthcare professionals who have direct contact with and make decisions about the care of people with chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) (CFS/ME). It covers care provided in primary and secondary care, and in specialist centres/teams. The Guideline Development Group (GDG) developed this guideline with the aims of: increasing the recognition of CFS/ME; influencing practice in the ‘real world’; improving access to appropriate services, and supporting consistent service provision; emphasising the need for multidisciplinary working; improving care for patients, particularly for those with severe CFS/ME; providing guidance on ‘best practice’ for children with CFS/ME; balancing clinical guidance with flexibility and management tailored to the needs of the patient; facilitating communication between practitioners and patients, and their families or carers, as appropriate.

Source: National Collaborating Centre for Primary Care (UK). London: Royal College of General Practitioners (UK); 2007 Aug. National Institute for Health and Clinical Excellence: Guidance. Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy): Diagnosis and Management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (or Encephalopathy) in Adults and Children [Internet]. https://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0009713/ (Full document)

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)

Chronic fatigue syndrome poses management challenge

According to the Centers for Disease Control and Prevention, chronic fatigue syndrome affects between 1 and 4 million Americans. At least one fourth of these are unemployed or on disability because of CFS. Yet according to the CDC, only about half of those thought to suffer from CFS have consulted a physician for their condition.

Primary symptoms include unexplained fatigue for six months or more, in addition to any number of the following: cognitive dysfunction, postexertional malaise lasting more than 24 hours, unrefreshing sleep, joint pain without redness or swelling, persistent muscle pain, headaches of a new type or severity, tender lymph nodes, and sore throat. There are more than a dozen other less common symptoms.

Health plan medical directors find the situation vexing. “Like all managed care organizations, Independence Blue Cross struggles with establishing appropriate coverage policies and clinical programs to address conditions in which there is considerable clinical controversy,” says Donald Liss, MD, the plan’s senior medical director of clinical programs and policy. “Conditions such as chronic fatigue syndrome are particularly challenging because of the nonspecific nature of the diagnostic criteria, the lack of objective studies to confirm a diagnosis, and the wide spectrum of therapies prescribed.”

You can read the rest of this article here: http://www.managedcaremag.com/linkout/2010/10/24

Source: Atkinson W. Chronic fatigue syndrome poses management challenge. Manag Care. 2010 Oct;19(10):24-6. http://www.managedcaremag.com/linkout/2010/10/24 (Full article)

Effects of an educational video film in fatigued children and adolescents: a randomised controlled trial

Abstract:

BACKGROUND: In many cases standard management for chronic fatigue syndrome (CFS) in children and adolescents is ineffective.

OBJECTIVE: To evaluate the efficacy of a video film intervention in preventing the development of persistent fatigue and significant school absence in fatigued children and adolescents.

DESIGN: Randomised controlled trial.

PARTICIPANTS: 91 patients with fatigue; 50 were randomly assigned to receive the intervention (video film plus usual care) and 41 to usual care only.

INTERVENTION: A video film on CFS and coping behaviour.

MAIN OUTCOME MEASURES: Self-reported fatigue severity, physical activity, motivation, concentration and school absence.

RESULTS: 79 patients had complete data at 12 months (42 in the video film and 37 in the usual care group). Mean fatigue severity and school absenteeism scores did not differ significantly, but in the intervention group the score for reduced motivation was higher (difference 2.9 (CI 0.1 to 5.7), p=0.038). 18% more patients in the intervention compared to the usual care group also had persistent fatigue with significant school absence. The odds of developing persistent fatigue and of missing >50% of school classes was 3.3 times higher in the intervention than in the usual care group (OR 3.3 (CI 1.0 to 11.3), p=0.046).

CONCLUSION:This particular video film intervention plus usual care in children and adolescents with unexplained fatigue did not prevent an unfavourable outcome and possibly had an adverse effect in that it reduced motivation and increased the incidence of persistent fatigue with significant school absence. The use of this particular film is not recommended.

Source: Bakker RJ, van de Putte EM, Kuis W, Sinnema G. Effects of an educational video film in fatigued children and adolescents: a randomised controlled trial. Arch Dis Child. 2011 May;96(5):457-60. doi: 10.1136/adc.2009.172072. Epub 2010 Sep 22. https://www.ncbi.nlm.nih.gov/pubmed/20861404

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

Conceptual model for physical therapist management of chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

Fatigue is one of the most common reasons why people consult health care providers. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is one cause of clinically debilitating fatigue. The underdiagnosis of CFS/ME, along with the spectrum of symptoms that represent multiple reasons for entry into physical therapy settings, places physical therapists in a unique position to identify this health condition and direct its appropriate management. The diagnosis and clinical correlates of CFS/ME are becoming better understood, although the optimal clinical management of this condition remains controversial.

The 4 aims of this perspective article are: (1) to summarize the diagnosis of CFS/ME with the goal of promoting the optimal recognition of this condition by physical therapists; (2) to discuss aerobic system and cognitive deficits that may lead to the clinical presentation of CFS/ME; (3) to review the evidence for graded exercise with the goal of addressing limitations in body structures and functions, activity, and participation in people with CFS/ME; and (4) to present a conceptual model for the clinical management of CFS/ME by physical therapists.

Source: Davenport TE, Stevens SR, VanNess MJ, Snell CR, Little T. Conceptual model for physical therapist management of chronic fatigue syndrome/myalgic encephalomyelitis. Phys Ther. 2010 Apr;90(4):602-14. doi: 10.2522/ptj.20090047. Epub 2010 Feb 25. http://ptjournal.apta.org/content/90/4/602.long (Full article)

Can pacing self-management alter physical behavior and symptom severity in chronic fatigue syndrome? A case series

Abstract:

Given the lack of evidence in support of pacing self-management for patients with chronic fatigue syndrome (CFS), we examined whether physical behavior and health status of patients with CFS would improve in response to a pacing self-management program.

We performed an observational study of pacing self-management in seven CFS patients using a single-case study design. Stages A1 and A2 (7-day assessment periods) of the A1-B-A2 design corresponded to the baseline and posttreatment measurements of physical behavior (real-time activity monitoring) and health status (self-reported measures), respectively. Stage B (3 weeks of treatment) consisted of three individual treatment sessions of pacing self-management.

When comparing pre- versus posttreatment data, we found that the patients’ ability to perform daily activities and the severity of their symptom complexes were improved (p = 0.043). Concentration difficulties, mood swings, muscle weakness, and intolerance to bright light improved as well. A statistically significant decrease in the mean time spent doing light activity (<3 metabolic equivalents) was observed, but a change in the way physical activity was spread throughout the day was not.

We found that 3 weeks of pacing self-management was accompanied by a modest improvement in symptom severity and daily functioning. The outcome of the present study calls for a randomized controlled clinical trial to examine the effectiveness of pacing self-management for people with CFS.

Source: Nijs J, van Eupen I, Vandecauter J, Augustinus E, Bleyen G, Moorkens G, Meeus M. Can pacing self-management alter physical behavior and symptom severity in chronic fatigue syndrome? A case series. J Rehabil Res Dev. 2009;46(7):985-96. http://www.rehab.research.va.gov/jour/09/46/7/Nijs.html (Full article)

The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review

Abstract:

BACKGROUND: We aimed to review systematically the needs for support in managing illness and maintaining social inclusion expressed by people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) METHODS: We carried out a systematic review of primary research and personal (‘own’) stories expressing the needs of people with CFS/ME. Structured searches were carried out on Medline, AMED, CINAHL, EMBASE, ASSIA, CENTRAL, and other health, social and legal databases from inception to November 2007. Study inclusion, data extraction and risk of bias were assessed independently in duplicate. Expressed needs were tabulated and a conceptual framework developed through an iterative process.

RESULTS: Thirty two quantitative and qualitative studies, including the views of over 2500 people with CFS/ME with mainly moderate or severe illness severity, met the inclusion criteria. The following major support needs emerged: 1) The need to make sense of symptoms and gain diagnosis, 2) for respect and empathy from service providers, 3) for positive attitudes and support from family and friends, 4) for information on CFS/ME, 5) to adjust views and priorities, 6) to develop strategies to manage impairments and activity limitations, and 7) to develop strategies to maintain/regain social participation.

CONCLUSIONS: Although the studies were heterogeneous, there was consistent evidence that substantial support is needed to rebuild lives. Gaining support depends – most importantly – on the ability of providers of health and social care, colleagues, friends and relatives, and those providing educational and leisure services, to understand and respond to those needs.

Source: Drachler Mde L, Leite JC, Hooper L, Hong CS, Pheby D, Nacul L, Lacerda E, Campion P, Killett A, McArthur M, Poland F. The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review. BMC Public Health. 2009 Dec 11;9:458. doi: 10.1186/1471-2458-9-458. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2799412/ (Full article)

Activity Logs as a Measure of Daily Activity Among Patients with Chronic Fatigue Syndrome

Abstract:

BACKGROUND: Self-report data collected through interviews has been one of the primary ways of assessing symptoms of patients with chronic fatigue syndrome (CFS). An alternative way to collect data involves activity logs, which involves patients writing down the pattern, intensity, and qualitative nature of activity over several days.

AIMS: We examined the associations between activity, evaluation of activity and symptoms.

METHODS: Activity log data over a two day period of time were used in the present study using a sample of patients with diagnosed CFS.

RESULTS: Findings indicated that the percent of time spent feeling fatigued was positively associated with a higher percent of time in pain and doing activities that were fatiguing. However, time spent in meaningful activities was associated with less fatigue.

CONCLUSIONS: These findings and others suggest that activity logs can provide investigators and clinicians with valuable sources of data for understanding patterns of behavior and activity among patients with CFS.

Source: Jason LA, Timpo P, Porter N, Herrington J, Brown M, Torres-Harding S, Friedberg F. Activity Logs as a Measure of Daily Activity Among Patients with Chronic Fatigue Syndrome. J Ment Health. 2009 Dec;18(6). Doi: 10.3109/09638230903191249. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3821173/ (Full article)