2015 – Page 14 – American ME and CFS Society

Are stamina and fatigue polar opposites? A case study

Abstract:

Most individuals with Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS) (Carruthers et al., 2003 ), Myalgic Encephalomyelitis (ME) (Carruthers et al., 2011 ), and chronic fatigue syndrome (CFS) (Fukuda et al., 1994 ) indicate that they experience fatigue and sharp decreases in energy levels, which hinder the ability to engage in physical activities (Friedberg & Jason, 1998 ). However, there are some individuals who reduce activity engagement in order to avoid a worsening of symptoms; thus these individuals may endorse lower levels of fatigue.

Accordingly, those with low levels of fatigue but low endurance/stamina might be inadvertently excluded from some criteria based on the fatigue requirement. The current study serves as an exploration of the relationship between fatigue and stamina and the effects of these constructs on illness symptomology and their implications for assessment and diagnosis.

Source: So S, Evans M, Jason LA, Brown A. Are stamina and fatigue polar opposites? A case study. J Prev Interv Community. 2015;43(1):32-41. doi: 10.1080/10852352.2014.973235. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4295717/ (Full article)

Problems in defining post-exertional malaise

Abstract:

Post-exertional malaise (PEM) is a cardinal symptom of the illnesses referred to as Myalgic Encephalomyelitis (ME), Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic fatigue syndrome (CFS). PEM is reported to occur in many of these patients, and with several criteria (e.g., ME and ME/CFS), this symptom is mandatory (Carruthers et al., 2003 , 2011 ).

In the present study, 32 participants diagnosed with CFS (Fukuda et al., 1994 ) were examined on their responses to self-report items that were developed to capture the characteristics and patterns of PEM. As shown in the results, the slight differences in wording for various items may affect whether one is determined to have PEM according to currently used self-report criteria to assess CFS. Better understanding of how this symptom is assessed might help improve the diagnostic reliability and validity of ME, ME/CFS, and CFS.

Source: Jason LA, Evans M, So S, Scott J, Brown A. Problems in defining post-exertional malaise. J Prev Interv Community. 2015;43(1):20-31. doi: 10.1080/10852352.2014.973239. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4295644/ (Full article)

Measuring substantial reductions in activity

Abstract:

The case definitions for Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), ME, and CFS each include a disability criterion requiring substantial reductions in activity in order to meet diagnostic criteria. Difficulties have been encountered in defining and operationalizing the substantial reduction disability criterion within these various illness definitions.

The present study sought to relate measures of past and current activities in several domains including the SF-36, an objective measure of activity (e.g., actigraphy), a self-reported quality of life scale, and measures of symptom severity.

Results of the study revealed that current work activities had the highest number of significant associations with domains such as the SF-36 subscales, actigraphy, and symptom scores. As an example, higher self-reported levels of current work activity were associated with better health. This suggests that current work related activities may provide a useful domain for helping operationalize the construct of substantial reductions in activity.

Source: Schafer C, Evans M, Jason LA, So S, Brown A. Measuring substantial reductions in activity. J Prev Interv Community. 2015;43(1):5-19. doi: 10.1080/10852352.2014.973242. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4295629/ (Full article)

Development of a group-based self-management programme for individuals with chronic fatigue syndrome: a pilot study

Abstract:

OBJECTIVE: The aim of the study was to develop a group-based self-management programme for individuals with chronic fatigue syndrome (CFS) by using the participants’ experiences with the initial version of the programme, which intends to promote coping with the illness in a primary healthcare setting.

METHODS: An initial programme was developed, based on self-efficacy theory and the concepts of client-centred practice and empowerment. Subsequently, the programme was tested and further developed by drawing on the participants’ experiences with the programme. Focus-group interviews were applied. The interviews were analysed using thematic analysis.

RESULTS: The initial programme was found to be feasible, although several modifications regarding the content and practical organization of the programme were proposed.

CONCLUSION: In line with the participants’ experiences, the final self-management programme was developed, which includes short presentations of eight topics, exchange of experiences among participants, goal-setting, construction of action plans, and relaxation exercises, in addition to a meeting for relatives. The programme will be provided in eight biweekly sessions and be led by juxtaposed peer counsellors and occupational therapists. The effects of the final programme will be evaluated in a randomized controlled trial.

Source: Pinxsterhuis I, Hellum LL, Aannestad HH, Sveen U. Development of a group-based self-management programme for individuals with chronic fatigue syndrome: a pilot study. Scand J Occup Ther. 2015 Mar;22(2):117-25. doi: 10.3109/11038128.2014.985608. Epub 2015 Jan 12. https://www.ncbi.nlm.nih.gov/pubmed/25581161

The association between daytime napping and cognitive functioning in chronic fatigue syndrome

Abstract:

OBJECTIVES: The precise relationship between sleep and physical and mental functioning in chronic fatigue syndrome (CFS) has not been examined directly, nor has the impact of daytime napping. This study aimed to examine self-reported sleep in patients with CFS and explore whether sleep quality and daytime napping, specific patient characteristics (gender, illness length) and levels of anxiety and depression, predicted daytime fatigue severity, levels of daytime sleepiness and cognitive functioning, all key dimensions of the illness experience.

METHODS: 118 adults meeting the 1994 CDC case criteria for CFS completed a standardised sleep diary over 14 days. Momentary functional assessments of fatigue, sleepiness, cognition and mood were completed by patients as part of usual care. Levels of daytime functioning and disability were quantified using symptom assessment tools, measuring fatigue (Chalder Fatigue Scale), sleepiness (Epworth Sleepiness Scale), cognitive functioning (Trail Making Test, Cognitive Failures Questionnaire), and mood (Hospital Anxiety and Depression Scale).

RESULTS: Hierarchical Regressions demonstrated that a shorter time since diagnosis, higher depression and longer wake time after sleep onset predicted 23.4% of the variance in fatigue severity (p <.001). Being male, higher depression and more afternoon naps predicted 25.6% of the variance in objective cognitive dysfunction (p <.001). Higher anxiety and depression and morning napping predicted 32.2% of the variance in subjective cognitive dysfunction (p <.001). When patients were classified into groups of mild and moderate sleepiness, those with longer daytime naps, those who mainly napped in the afternoon, and those with higher levels of anxiety, were more likely to be in the moderately sleepy group.

CONCLUSIONS: Napping, particularly in the afternoon is associated with poorer cognitive functioning and more daytime sleepiness in CFS. These findings have clinical implications for symptom management strategies.

Source: Gotts ZM, Ellis JG, Deary V, Barclay N, Newton JL. The association between daytime napping and cognitive functioning in chronic fatigue syndrome. PLoS One. 2015 Jan 9;10(1):e0117136. doi: 10.1371/journal.pone.0117136. ECollection 2015. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4289075/ (Full article)

Examining the Institute of Medicine’s Recommendations Regarding Chronic Fatigue Syndrome: Clinical Versus Research Criteria

Abstract:

The Institute of Medicine (2015) has proposed a new clinical case definition for what had been known as chronic fatigue syndrome (CFS). This new criteria involved the following domains: substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social, or personal activities; post-exertional malaise; unrefreshing sleep; and at least one of the two following symptoms: cognitive impairment or orthostatic intolerance.

In addition, in August of 2015, the CFS Advisory Committee, which makes recommendations to the Secretary of US Department of Health and Human Services, proposed that the Canadian 2003 criteria should serve as the research case for CFS. Up to now, there have not been any published investigations comparing these clinical and research criteria.

Using patient samples collected in the United States, Great Britain, and Norway, the current study compared and contrasted patients who met the clinical and research criteria. Overall findings indicated that those meeting the research criteria in comparison to those meeting the clinical criteria were significantly more impaired on a wide variety of symptoms and functional areas. The implications of these findings are discussed.

Source: Jason LA, McManimen S, Sunnquist M, Brown A, Newton JL, Strand EB. Examining the Institute of Medicine’s Recommendations Regarding Chronic Fatigue Syndrome: Clinical Versus Research Criteria. J Neurol Psychol. 2015;2015(Suppl 2). pii: http://www.avensonline.org/wp-content/uploads/JNP-2332-3469-S2-0002.pdf. Epub 2015 Nov 25. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5008852/ (Full article)

The impact of symptom stability on time frame and recall reliability in CFS

Abstract:

OBJECTIVE: This study is an investigation of the potential impact of perceived symptom stability on the recall reliability of symptom severity and frequency as reported by individuals with chronic fatigue syndrome (CFS). Symptoms were recalled using three different recall timeframes (the past week, the past month, and the past six months) and at two assessment points (with one week in between each assessment).

METHODS: Participants were 51 adults (45 women and 6 men), between the ages of 29 and 66 with a current diagnosis of CFS. Multilevel Model (MLM) Analyses were used to determine the optimal recall timeframe (in terms of test-retest reliability) for reporting symptoms perceived as variable and as stable over time.

RESULTS: Headaches were recalled more reliably when they were reported as stable over time. Furthermore, the optimal timeframe in terms of test-retest reliability for stable symptoms was highly uniform, such that all Fukuda CFS symptoms were more reliably recalled at the six month timeframe. Furthermore, the optimal timeframe for CFS symptoms perceived as variable, differed across symptoms.

DISCUSSION: Symptom stability and recall timeframe are important to consider in order to improve the accuracy and reliability of the current methods for diagnosing this illness.

Source: Evans M, Jason LA. The impact of symptom stability on time frame and recall reliability in CFS. Cogent Psychol. 2015;2(1). pii: 1079945. Epub 2015 Aug 28. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4831646/ (Full article)

The use of mixed methods in studying a chronic illness

Abstract:

This article explores mixed methods approaches with an illness called Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS). Qualitative and Quantitative data were used to investigate the epidemiology of this illness, as well as explore attributions based on the name of the illness, and finally treatment approaches.

In each of the domains within the ME and CFS research reviewed, our analyses were richer and our findings ultimately more impactful when we integrated qualitative and quantitative research methods. The use of a multiphase mixed methods research program provided our team unique vantage points for better understanding social and community issues involving this controversial chronic illness.

Further, this approach allowed us to implement the insights gained through an advocacy lens to change policy, recommend and evaluate treatments, and amplify voices within the patient population. In this way, we believe that the practice of methodological pluralism is especially applicable and effective to the study of chronic illness, and believe other investigators will benefit from the use of these approaches with similar disenfranchised and unfairly treated populations.

Source: Jason LA, Reed J. The use of mixed methods in studying a chronic illness. Health Psychol Behav Med. 2015;3(1):40-51. Epub 2015 Jan 9. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4831644/ (Full article)

Variability in Symptoms Complicates Utility of Case Definitions

Abstract:

BACKGROUND: Ambiguities in case definitions have created difficulties in replicating findings and estimating the prevalence rates for chronic fatigue syndrome (CFS) and Myalgic Encephalomyelitis (ME).

PURPOSE: The current study examined differences in occurrence rates for CFS and ME cardinal symptoms (i.e. post-exertional malaise, unrefreshing sleep, and neurocognitive deficits).

RESULTS: Findings indicated that there is a wide range of occurrence rates on critical symptoms of the case definition, suggesting that either the types of patients recruited differ in various settings or the questions assessing core symptoms vary in their wording or criteria among different researchers.

CONCLUSIONS: The polythetic nature of the case definition may contribute to the wide ranges of symptom occurrence that was found. In order to increase assessed reliability of the symptoms and case definitions, there is a need to better standardize data collection methods and operationalization of symptoms. This solution would reduce the heterogeneity often seen in populations of CFS patients.

Source: McManimen SL, Jason LA, Williams YJ. Variability in Symptoms Complicates Utility of Case Definitions. Fatigue. 2015;3(3):164-172. Epub 2015 May 12. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4831632/ (Full article)