Category: Management

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)

 

Provision of social support to individuals with chronic fatigue syndrome

Abstract:

The present study evaluated a buddy program designed to provide support for individuals with chronic fatigue syndrome (CFS). The intervention involved weekly visits by a student paraprofessional, who helped out with tasks that needed to be done in an effort to reduce some of the taxing demands and responsibilities that participants regularly encountered. This model of rehabilitation focused on avoiding overexertion in persons with CFS, aiming to avoid setbacks and relapses while increasing their tolerance for activity.

Participants with CFS were randomly assigned to either a 4-month buddy intervention or a control condition. Posttest results showed that individuals who received a student buddy intervention had significantly greater reductions in fatigue severity and increases in vitality than individuals in the control condition. There were no significant changes between groups for physical functioning and stress.

Buddy interventions that help patients with CFS reduce overexertion and possibly remain within their energy envelopes can be thought of as representing a different paradigm than nonpharmacologic interventions that focus only on increasing levels of activity through graded exercise.

Copyright 2009 Wiley Periodicals, Inc.

 

Source: Jason LA, Roesner N, Porter N, Parenti B, Mortensen J, Till L. Provision of social support to individuals with chronic fatigue syndrome. J Clin Psychol. 2010 Mar;66(3):249-58. doi: 10.1002/jclp.20648. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3693568/ (Full article)

 

The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS

Abstract:

OBJECTIVE: The energy envelope postulates that patients with Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) will improve functioning when maintaining expended energy levels at the same level as available energy level.

METHODS: Estimated weekly Energy Quotients were established by dividing expended energy level by perceived energy level and multiplying by 100. Two groups of patients were identified following participation in a non-pharmacologic intervention trial. Some were able to keep expended energy close to available energy and others were not successful at this task.

RESULTS: Those who were able to stay within their energy envelope had significant improvements in physical functioning and fatigue severity.

CONCLUSION: Findings suggest that helping patients with ME/CFS maintain appropriate energy expenditures in coordination with available energy reserves can help improve functioning over time.

PRACTICE IMPLICATIONS: Health care professionals that treat patients with ME/CFS might incorporate strategies that help patients self-monitor and self-regulate energy expenditures.

Comment in: Treatment of chronic fatigue syndrome: how to find a ‘new equilibrium’? [Patient Educ Couns. 2009]

 

Source: Jason L, Benton M, Torres-Harding S, Muldowney K. The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS. Patient Educ Couns. 2009 Nov;77(2):237-41. doi: 10.1016/j.pec.2009.02.015. Epub 2009 Apr 8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2767446/(Full article)

 

Practice Nurses’ views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study

Abstract:

BACKGROUND: NICE guidelines suggest that patients with Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) should be managed in Primary Care. Practice Nurses are increasingly being involved in the management of long-term conditions, so are likely to also have a growing role in managing CFS/ME. However their attitudes to, and experiences of patients with CFS/ME and its management must be explored to understand what barriers may exist in developing their role for this group of patients. The aim of this study was to explore Practice Nurses’ understanding and beliefs about CFS/ME and its management.

METHODS: Semi-structured interviews with 29 Practice Nurses. Interviews were transcribed verbatim and an iterative approach used to develop themes from the dataset.

RESULTS: Practice nurses had limited understanding about CFS/ME which had been largely gained through contact with patients, friends, personal experiences and the media rather than formal training. They had difficulty seeing CFS/ME as a long term condition. They did identify a potential role they could have in management of CFS/ME but devalued their own skills in psychological intervention, and suggested counselling would be an appropriate therapeutic option. They recognised a need for further training and on going supervision from both medical and psychological colleagues. Some viewed the condition as contentious and held pejorative views about CFS/ME. Such scepticism and negative attitudes will be a significant barrier to the management of patients with CFS/ME in primary care.

CONCLUSION: The current role of Practice Nurses in the ongoing management of patients with CFS/ME is limited. Practice Nurses have little understanding of the evidence-base for treatment of CFS/ME, particularly psychological therapies, describing management options in terms of advice giving, self-help or counselling. Practice Nurses largely welcomed the potential development of their role in this area, but identified barriers and training needs which must be addressed to enable them to feel confident managing of patients with this condition. Training must begin by addressing negative attitudes to patients with CFS/ME.

 

Source: Chew-Graham C, Dixon R, Shaw JW, Smyth N, Lovell K, Peters S. Practice Nurses’ views of their role in the management of Chronic Fatigue Syndrome/Myalagic Encephalitis: a qualitative study. BMC Nurs. 2009 Jan 22;8:2. doi: 10.1186/1472-6955-8-2. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2635361/ (Full article)

 

The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome

Erratum in: AAOHN J. 2008 Jul;56(7):288. Muldowney, Kathleen [added]; Torres-Harding, Susan [added].

Abstract:

Individuals with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have little stamina and endurance, and pose a challenge for nursing professionals. The Energy Envelope Theory, which posits that maintaining expended energy levels consistent with available energy levels may reduce the frequency and severity of symptoms, is particularly useful when working with clients with ME/CFS. Anecdotal support from the client community for this theory supports its use as a management tool for ME/CFS, but little formal research has been done in this area.

In this study, a daily energy quotient was established by dividing the expended energy level by the perceived energy level and multiplying by 100. It was predicted that those participants who expended energy beyond their level of perceived energy would have more severe fatigue and symptoms and lower levels of physical and mental functioning.

Findings are congruent with the Energy Envelope Theory as they indicated that the daily energy quotient was related to several indices of functioning including depression, anxiety, fatigue, pain, quality of life, and disability. The overall results provide support for a strategy health care professionals can use when working with clients with ME/CFS.

 

Source: Jason L, Muldowney K, Torres-Harding S. The Energy Envelope Theory and myalgic encephalomyelitis/chronic fatigue syndrome. AAOHN J. 2008 May;56(5):189-95. https://www.ncbi.nlm.nih.gov/pubmed/18578185

 

Dietary intervention in chronic fatigue syndrome

Abstract:

BACKGROUND: Anecdotal reports and books have been published linking an over growth of Candida Albicans with chronic fatigue syndrome (CFS), suggesting dietary change as a treatment option. Little scientific data has been published to validate this controversial theory. This study aims to determine the efficacy of dietary intervention on level of fatigue and quality of life (QoL) in individuals with CFS.

METHODS: A 24-week randomized intervention study was conducted with 52 individuals diagnosed with CFS. Patients were randomized to either a low sugar low yeast (LSLY) or healthy eating (HE) dietary interventions. Primary outcome measures were fatigue as measured by the Chalder Fatigue Score and QoL measured by Medical Outcomes Survey Short Form-36.

RESULTS: A high drop out rate occurred with 13 participants not completing the final evaluation (7HE/6LSLY). Intention to treat analysis showed no statistically significant differences on primary outcome measurements.

CONCLUSION: In this randomized control trial, a LSLY diet appeared to be no more efficacious on levels of fatigue or QoL compared to HE. Given the difficulty with dietary compliance experienced by participants, especially in the LSLY group, it would appear HE guidance is a more pragmatic approach than advocating a complicated dietary regime.

 

Source: Hobday RA, Thomas S, O’Donovan A, Murphy M, Pinching AJ. Dietary intervention in chronic fatigue syndrome. J Hum Nutr Diet. 2008 Apr;21(2):141-9. doi: 10.1111/j.1365-277X.2008.00857.x. https://www.ncbi.nlm.nih.gov/pubmed/18339054

 

Overview of medical treatment and management of chronic fatigue syndrome

Abstract:

A tailor-made management plan that includes various combinations of non-pharmacologic and pharmacologic therapy for patients withchronic fatigue syndrome (CFS) is important. We present an overview of four aspects of our medical treatment and management for CFS: introduction of our medical management system, summary of our management strategy, non-pharmacologic therapy, and pharmacologic therapy; according to foreign guidelines and the latest studies. The main non-pharmacologic therapies for CFS are rehabilitation and lifestyle guidance. Using a graded exercise therapy, we have constructed a broad management strategy for CFS. Herein we introduce our graded exercise therapy. If the symptoms continue despite careful management of the program by the physician, consultation with a psychiatrist or psychosomatic medicine specialist is necessary.

 

Source: Yoshihara K, Kubo C. Overview of medical treatment and management of chronic fatigue syndrome. Nihon Rinsho. 2007 Jun;65(6):1077-81. [Article in Japanese] https://www.ncbi.nlm.nih.gov/pubmed/17561700

 

Managing chronic fatigue syndrome in U.K. primary care: challenges and opportunities

Abstract:

Calls for the treatment of chronic fatigue syndrome (CFS) in primary care have been based largely on considerations of the availability and accessibility of resources rather than with reference to a firm evidence base. Treatments such as cognitive-behavioural therapy and graded exercise therapy, which have proven effective for CFS in secondary and specialist care settings, have not been adequately tested in primary care. There are several factors that may affect the generalizability of such treatments. Patients seen in primary care may differ from those seen in secondary care, in terms of both illness beliefs and social characteristics, and these factors need to be taken into account when developing and adapting treatments for primary care. While some primary care physicians experience difficulties in the diagnosis of CFS, we argue that early and authoritative diagnosis and the provision of a tangible explanation for patients’ symptoms are likely to be beneficial. Because of the scarcity of qualified specialist therapists, we need to train primary care practitioners to deliver treatments, and we need more research into the feasibility and effectiveness of doing this. Finally, the primary care setting offers opportunities for the guided development of patient self-help approaches.

 

Source: Wearden AJ, Chew-Graham C. Managing chronic fatigue syndrome in U.K. primary care: challenges and opportunities. Chronic Illn. 2006 Jun;2(2):143-53. https://www.ncbi.nlm.nih.gov/pubmed/17175657