Page 413 – American ME and CFS Society

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)

Plasma cytokine expression in adolescent chronic fatigue syndrome

Abstract:

Chronic fatigue syndrome (CFS) is a prevalent and disabling condition among adolescents. The pathophysiology is poorly understood, but low-grade systemic inflammation has been suggested as an important component. This study compared circulating levels of individual cytokines and parameters of cytokine networks in a large set of adolescent CFS patients and healthy controls, and explored associations between cytokines and symptoms in the CFS group.

CFS patients (12-18years old) were recruited nation-wide to a single referral center as part of the NorCAPITAL project (ClinicalTrials ID: NCT01040429). A broad case definition of CFS was applied, requiring three months of unexplained, disabling chronic/relapsing fatigue of new onset, whereas no accompanying symptoms were necessary. Thus, the case definition was broader than the Fukuda-criteria of CFS. Healthy controls having comparable distribution of gender and age were recruited from local schools. Twenty-seven plasma cytokines, including interleukins, chemokines and growth factors were assayed using multiplex technology. The results were subjected to network analyses using the ARACNE algorithm. Symptoms were charted by a questionnaire, and patients were subgrouped according to the Fukuda-criteria. A total of 120 CFS patients and 68 healthy controls were included.

CFS patients had higher scores for fatigue (p<0.001) and inflammatory symptoms (p<0.001) than healthy controls. All cytokine levels and cytokine network parameters were similar, and none of the differences were statistically different across the two groups, also when adjusting for adherence to the Fukuda criteria of CFS. Within the CFS group, there were no associations between aggregate cytokine network parameters and symptom scores. Adolescent CFS patients are burdened by symptoms that might suggest low-grade systemic inflammation, but plasma levels of individual cytokines as well as cytokine network measures were not different from healthy controls, and there were no associations between symptoms and cytokine expression in the CFS group. Low-grade systemic inflammation does not appear to be a central part of adolescent CFS pathophysiology.

Source: Wyller VB, Sørensen Ø, Sulheim D, Fagermoen E, Ueland T, Mollnes TE. Plasma cytokine expression in adolescent chronic fatigue syndrome. Brain Behav Immun. 2015 May;46:80-6. doi: 10.1016/j.bbi.2014.12.025. Epub 2014 Dec 31. https://www.ncbi.nlm.nih.gov/pubmed/25555530

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)

Defining Essential Features of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome

Abstract:

Considerable debate surrounds the search for the defining features of patients with Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS). Current case definitions were created through clinical consensus. Failure to operationalize these case definitions has led to considerable variability in the identification of patients. In addition, some case definitions (e.g., Fukuda et al., 1994) do not require cardinal symptoms of this illness, where as other case definitions do require core symptoms of this illness (Carruthers et al., 2003, 2011), and these latter case criteria appear to identify a more impaired group of patients.

Criterion variance is most likely to occur when operationally explicit criteria do not exist for diagnostic categories (Spitzer, Endicott, & Robins, 1978), or when there are varying criteria for contrasting case definitions, which is an impediment to the research in this field. To deal with this problem, it is possible to differentiate those that meet more loosely defined criteria from those that are more narrowly and defined, thus differentiating CFS from ME.

In order to progress the search for biological markers and effective treatments, essential features need to be operationalized and broadly used in order to increase the probability that individuals included in samples have the same underlying illness.

Source: Jason LA, Sunnquist M, Brown A, Reed J. Defining Essential Features of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. J Hum Behav Soc Environ. 2015;25(6):657-674. Epub 2015 May 6. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4817848/ (Full article)

Test-Retest Reliability of the DePaul Symptom Questionnaire

Abstract:

BACKGROUND: The DePaul Symptom Questionnaire (DSQ) was developed to provide a structured approach for collecting standardized symptomatology and health history information to allow researchers and clinicians to determine whether a patient meets the diagnostic criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), myalgic encephalomyelitis (ME), and/or chronic fatigue syndrome (CFS).

PURPOSE: The purpose of this study was to examine the test-retest reliability of the DSQ.

METHODS: Test-retest reliability of the measure was examined with a sample of 26 adults self-identifying as having either ME/CFS, ME and/or CFS and 25 adults who did not self-identify as having these illnesses and were otherwise healthy controls.

RESULTS: Overall, the majority of items on the DSQ exhibited good to excellent test-retest reliability, with Pearson’s or kappa correlation coefficients that were 0.70 or higher.

CONCLUSIONS: Thus, the present study suggests that the DSQ is a reliable diagnostic measure that can provide a standardized way of examining illness constructs and symptomatology among patients who identify as having ME/CFS, ME and/or CFS.

Source: Jason LA, So S, Brown AA, Sunnquist M, Evans M. Test-Retest Reliability of the DePaul Symptom Questionnaire. Fatigue. 2015 Jan 1;3(1):16-32. Epub 2015 Jan 8. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4788471/ (Full article)

Finding benefit in stressful uncertain circumstances: relations to social support and stigma among women with unexplained illnesses

Abstract:

Living with a chronic illness can be challenging, but the ability to derive benefits and grow from this experience may enhance well-being. However, the possibility of obtaining such benefits may be dependent on the levels of stigmatization and lack of social support experienced by an individual as a result of the illness.

Chronic fatigue syndrome (CFS) and fibromyalgia are chronic conditions that remain largely unexplained and those with these conditions must often contend with stigma and skepticism from others. Individuals with CFS/fibromyalgia often display stress-related biological alterations and the experience of stressful life events has been associated with illness development.

The present study demonstrated that women with CFS/fibromyalgia (n = 40) as well as community participants who were depressed/anxious (n = 37), reported higher stigma levels than healthy women (n = 33). Moreover, women with CFS/fibromyalgia and those with depression/anxiety also reported greater levels of stigma than women with a chronic yet more widely accepted condition (n = 35; rheumatoid arthritis, osteoarthritis and multiple sclerosis).

Secrecy related to stigma among those with CFS/fibromyalgia declined with increased social support, but this was not apparent among those with other chronic conditions. In addition, posttraumatic growth was lower among women with CFS/fibromyalgia compared to those with other chronic conditions.

Qualitative analysis examining both negative impacts and positive changes stemming from illness experience revealed many similarities between women with CFS/fibromyalgia and those with other chronic conditions, including elevated appreciation for life, personal growth and compassion for others. However, women with CFS/fibromyalgia tended to report less positive change regarding interpersonal relationships compared to women with other chronic conditions.

In general, unexplained illnesses were also accompanied by stigmatization which might ultimately contribute to women’s lower ability to derive positive growth from their illness experience.

Source: McInnis OA, McQuaid RJ, Bombay A, Matheson K, Anisman H. Finding benefit in stressful uncertain circumstances: relations to social support and stigma among women with unexplained illnesses. Stress. 2015;18(2):169-77. doi: 10.3109/10253890.2014.1001975. Epub 2015 Jan 23. https://www.ncbi.nlm.nih.gov/pubmed/25544022