Health Status – Page 4 – American ME and CFS Society

Neurocognitive complaints and functional status among patients with chronic fatigue syndrome and fibromyalgia

Abstract:

PURPOSE: The purpose of this study was to conduct a longitudinal examination of cognitive complaints and functional status in patients with chronic fatigue syndrome (CFS) alone and those who also had fibromyalgia (CFS/FM).

METHODS: A total of 93 patients from a tertiary care fatigue clinic were evaluated on four occasions, each 6 months apart. Each evaluation included a tender point assessment, and self-reported functional status and cognitive complaints.

RESULTS: Patients with CFS/FM reported significantly worse physical functioning, more bodily pain, and more cognitive difficulties (visuo-perceptual ability and verbal memory) than patients with CFS alone. Over time, bodily pain decreased only for participants with CFS alone. Verbal memory problems were associated with more bodily pain for both patient groups, whereas visuo-perceptual problems were associated with worse functional status for patients with CFS alone.

CONCLUSIONS: This study adds to the literature on functional status, longitudinal course, and cognitive difficulties among patients with CFS and those with CFS and FM. The results suggest that patients with CFS/FM are more disabled, have more cognitive complaints, and improve more slowly over time than patients with CFS alone. Specific cognitive difficulties are related to worse functional status, which supports the addition of cognitive difficulties to the FM case criteria.

Source: Schmaling KB, Betterton KL. Neurocognitive complaints and functional status among patients with chronic fatigue syndrome and fibromyalgia. Qual Life Res. 2016 May;25(5):1257-63. doi: 10.1007/s11136-015-1160-y. Epub 2015 Oct 15. https://www.ncbi.nlm.nih.gov/pubmed/26471263

Gender differences in chronic fatigue syndrome

Abstract:

BACKGROUND AND OBJECTIVES: Chronic fatigue syndrome (CFS) is a chronic condition that predominantly affects women. To date, there are few epidemiologic studies on CFS in men. The objective of the study was to assess whether there are gender-related differences in CFS, and to define a clinical phenotype in men.

PATIENTS AND METHODS: A prospective, cross-sectional cohort study was conducted including CFS patients at the time of diagnosis. Sociodemographic data, clinical variables, comorbid phenomena, fatigue, pain, anxiety/depression, and health quality of life, were assessed in the CFS population. A comparative study was also conducted between genders.

RESULTS: The study included 1309 CFS patients, of which 119 (9.1%) were men. The mean age and symptoms onset were lower in men than women. The subjects included 30% single men vs. 15% single women, and 32% of men had specialist work vs. 20% of women. The most common triggering factor was an infection. Widespread pain, muscle spasms, dizziness, sexual dysfunction, Raynaud’s phenomenon, morning stiffness, migratory arthralgias, drug and metals allergy, and facial oedema were less frequent in men. Fibromyalgia was present in 29% of men vs. 58% in women. The scores on physical function, physical role, and overall physical health of the SF-36 were higher in men. The sensory and affective dimensions of pain were lower in men.

CONCLUSIONS: The clinical phenotype of the men with CFS was young, single, skilled worker, and infection as the main triggering agent. Men had less pain and less muscle and immune symptoms, fewer comorbid phenomena, and a better quality of life.

Source: Faro M, Sàez-Francás N, Castro-Marrero J, Aliste L, Fernández de Sevilla T, Alegre J. Gender differences in chronic fatigue syndrome. Reumatol Clin. 2016 Mar-Apr;12(2):72-7. doi: 10.1016/j.reuma.2015.05.007. Epub 2015 Jul 17. [Article in English, Spanish] http://www.reumatologiaclinica.org/es/linkresolver/diferencias-genero-pacientes-con-sindrome/S1699258X15000819/ (Full article)

The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS)

Abstract:

INTRODUCTION: Myalgic encephalomyelitis (ME)/chronic fatigue syndrome (CFS) is a common, severe condition affecting 0.2 to 0.4 per cent of the population. Even so, no recent international EQ-5D based health-related quality of life (HRQoL) estimates exist for ME/CFS patients. The main purpose of this study was to estimate HRQoL scores using the EQ-5D-3L with Danish time trade-off tariffs. Secondary, the aims were to explore whether the results are not influenced by other conditions using regression, to compare the estimates to 20 other conditions and finally to present ME/CFS patient characteristics for use in clinical practice.

MATERIAL AND METHODS: All members of the Danish ME/CFS Patient Association in 2013 (n=319) were asked to fill out a questionnaire including the EQ-5D-3L. From these, 105 ME/CFS patients were identified and gave valid responses. Unadjusted EQ-5D-3L means were calculated and compared to the population mean as well as to the mean of 20 other conditions. Furthermore, adjusted estimates were calculated using ordinary least squares (OLS) regression, adjusting for gender, age, education, and co-morbidity of 18 self-reported conditions. Data from the North Denmark Health Profile 2010 was used as population reference in the regression analysis (n=23,392).

RESULTS: The unadjusted EQ-5D-3L mean of ME/CFS was 0.47 [0.41-0.53] compared to a population mean of 0.85 [0.84-0.86]. The OLS regression estimated a disutility of -0.29 [-0.21;-0.34] for ME/CFS patients in this study. The characteristics of ME/CFS patients are different from the population with respect to gender, relationship, employment etc.

CONCLUSION: The EQ-5D-3L-based HRQoL of ME/CFS is significantly lower than the population mean and the lowest of all the compared conditions. The adjusted analysis confirms that poor HRQoL of ME/CFS is distinctly different from and not a proxy of the other included conditions. However, further studies are needed to exclude the possible selection bias of the current study.

Source: Falk Hvidberg M, Brinth LS, Olesen AV, Petersen KD, Ehlers L. The Health-Related Quality of Life for Patients with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). PLoS One. 2015 Jul 6;10(7):e0132421. doi: 10.1371/journal.pone.0132421. ECollection 2015. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4492975/ (Full article)

Chronic fatigue syndrome and fibromyalgia in Canada: prevalence and associations with six health status indicators

Abstract:

INTRODUCTION: Few studies have considered the factors independently associated with chronic fatigue syndrome (CFS) and/or fibromyalgia (FM) or considered the impact of these conditions on health status using population-based data.

METHODS: We used data from the nationally representative 2010 Canadian Community Health Survey (n = 59 101) to describe self-reported health professional-diagnosed CFS and/or FM, and their associations with 6 health status indicators.

RESULTS: In 2010, diagnosed CFS and FM are reported by 1.4% (95% confidence interval [CI]: 1.3%-1.6%) and 1.5% (1.4%-1.7%), respectively, of the Canadian household population aged 12 years and over, with comorbid CFS and FM affecting 0.3% (0.3%-0.4%) of that population. Prevalent CFS and/or FM were more common among women, adults aged 40 years and over, those with lowest income, and those with certain risk factors for chronic disease (i.e. obesity, physical inactivity and smoking). After controlling for differences between the groups, people with CFS and/or FM reported poorer health status than those with neither condition on 5 indicators of health status, but not on the measure of fair/poor mental health. Having both CFS and FM and having multiple comorbid conditions was associated with poorer health status.

CONCLUSION: Co-occurrence of CFS and FM and having other chronic conditions were strongly related to poorer health status and accounted for much of the differences in health status. Understanding factors contributing to improved quality of life in people with CFS and/or FM, particularly in those with both conditions and other comorbidities, may be an important area for future research.

Source: Rusu C, Gee ME, Lagacé C, Parlor M. Chronic fatigue syndrome and fibromyalgia in Canada: prevalence and associations with six health status indicators. Health Promot Chronic Dis Prev Can. 2015 Mar;35(1):3-11. [Article in English, French; Abstract available in French from the publisher] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4939456/ (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

Longitudinal follow-up of employment status in patients with chronic fatigue syndrome after mononucleosis

Abstract:

OBJECTIVE: To examine the effect of early clinical and demographic factors on occupational outcome, return to work or awarded permanent disability pension in young patients with chronic fatigue syndrome (CFS).

DESIGN: Longitudinal cohort study.

INTERVENTION: A written self-management programme including a description of active coping strategies for daily life was provided.

SETTING, PARTICIPANTS: Patients with CFS after mononucleosis were evaluated at Department of Neurology, Haukeland University Hospital during 1996-2006 (contact 1). In 2009 self-report questionnaires were sent to all patients (contact 2).

PRIMARY AND SECONDARY OUTCOME MEASURES: Primary measure was employment status at contact 2. Secondary measures included clinical symptoms, and Fatigue Severity Scale (FSS) scores on both contacts, and Work and Social Adjustment Scale (WSAS) at contact 2.

RESULTS: Of 111 patients at contact 1, 92 (83%) patients returned the questionnaire at contact 2. Mean disease duration at contact 1 was 4.7 years and at contact 2 11.4 years. At contact 1, 9 (10%) were part-time or full-time employed. At contact 2, 49 (55%) were part-time or full-time employed. Logical regression analysis showed that FSS≥5 at contact 2 was associated with depression, arthralgia and long disease duration (all at contact 1).

CONCLUSIONS: About half of younger patients with CFS with long-term incapacity for work experienced marked improvement including full-time or part-time employment showing better outcomes than expected. Risk factors for transition to permanent disability were depression, arthralgia and disease duration.

Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://group.bmj.com/group/rights-licensing/permissions.

Source: Nyland M, Naess H, Birkeland JS, Nyland H. Longitudinal follow-up of employment status in patients with chronic fatigue syndrome after mononucleosis. BMJ Open. 2014 Nov 26;4(11):e005798. doi: 10.1136/bmjopen-2014-005798. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4248085/ (Full article)

A comparison of health status in patients meeting alternative definitions for chronic fatigue syndrome/myalgic encephalomyelitis

Abstract:

BACKGROUND: Several diagnostic definitions are available for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) that varies significantly in their symptom criteria. This pilot study was conducted to determine whether simple biological and clinical measures differed between CFS/ME patients meeting the 1994 Centres for Disease Control and Prevention (CDC) criteria, the International Consensus Criteria (ICC), as well as healthy controls.

METHODS: A total of 45 CFS/ME patients and 30 healthy controls from the South East Queensland region of Australia provided a blood sample, reported on their current symptoms, as well as aspects of their physical and social health using the Short-Form Health Survey (SF-36), and the World Health Organisation Disability Adjustment Schedule 2.0 (WHO DAS 2.0). Differences were examined using independent sample t-testing.

RESULTS: Patients fulfilling the ICC definition reported significantly lower scores (p < 0.05) for physical functioning, physical role, bodily pain, and social functioning than those that only fulfilled the 1994 CDC definition. ICC patients reported significantly greater (p < 0.05) disability across all domains of the WHO DAS 2.0.

CONCLUSIONS: These preliminary findings suggest that the ICC identifies a distinct subgroup found within patients complying with the 1994 CDC definition, with more severe impairment to their physical and social functioning.

Source: Johnston SC, Brenu EW, Hardcastle SL, Huth TK, Staines DR, Marshall-Gradisnik SM. A comparison of health status in patients meeting alternative definitions for chronic fatigue syndrome/myalgic encephalomyelitis. Health Qual Life Outcomes. 2014 Apr 30;12:64. doi: 10.1186/1477-7525-12-64. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4008489/ (Full article)

Chronic fatigue syndrome is associated with the risk of fracture: a nationwide cohort study

Abstract:

PURPOSE: Chronic fatigue syndrome (CFS) is a complex disorder that is associated with unreasonable persistent fatigue. CFS has also been reported to be a possible risk factor for osteopathy. We propose that CFS might be associated with an increased risk of fracture.

METHODS: We used the National Health Insurance Research Database to conduct a prospective cohort study, identifying 3744 patients with a CFS diagnosis (International Classification of Diseases, Ninth Revision, Clinical Modification code 780.71) and 14 976 patients without CFS until 2006, with follow-up observed until the end of 2010.

RESULTS: The incidence rate of fracture was higher in the CFS cohort than in the non-CFS cohort (17.44 vs. 14.53 per 1000 person-year, respectively), with an adjusted hazard ratio of 1.14 (95% confidence interval = 1.00-1.30). The risks of fracture between CFS and non-CFS were shown without comorbidity for each would be elevated than with other comorbidities, particularly in osteoporosis. The patients without osteoporosis in the CFS cohort exhibited a 1.16-fold higher risk of fracture than did those in the non-CFS cohort.

CONCLUSIONS: We propose that CFS-related fracture might not be associated with osteoporosis. The mechanism for developing CFS-related fracture remains unclear; however, we recommend noticing the prevention of fracture for CFS patients before clarifying the aetiology of CFS-related fracture.

Source: Chen CS, Lin WM, Yang TY, Chen HJ, Kuo CN, Kao CH. Chronic fatigue syndrome is associated with the risk of fracture: a nationwide cohort study. QJM. 2014 Aug;107(8):635-41. doi: 10.1093/qjmed/hcu037. Epub 2014 Mar 11. https://www.ncbi.nlm.nih.gov/pubmed/24619129

Differences in physical functioning between relatively active and passive patients with Chronic Fatigue Syndrome

Abstract:

OBJECTIVE: According to the Cognitive behavioral therapy (CBT) protocol for patients with Chronic Fatigue Syndrome (CFS), therapists are advised to categorize patients in relatively active and passive patients. However, evidence to support the differences in physical functioning between these subgroups is limited. Using the baseline data from a multicentre randomized controlled trial (FatiGo), the differences in actual and perceived physical functioning between active and passive patients with CFS were evaluated.

METHODS: Sixty patients, who received CBT during the FatiGo trial were included. Based on the expert opinion and using the definitions of subgroups defined in the CBT protocols, the therapist categorized the patient. Data from an activity monitor was used to calculate actual physical functioning, physical activity, daily uptime, activity fluctuations and duration of rest during daily life. Perceived physical functioning was assessed by measuring physical activity, physical functioning and functional impairment with the Checklist Individual Strength, Short Form-36 and Sickness-Impact Profile 8.

RESULTS: Relatively active patients have a significantly higher daily uptime and show significantly less fluctuations in activities between days. Passive patients experience a significantly lower level of physical functioning and feel more functionally impaired in their mobility. However, no significant differences were found in the other actual or perceived physical functioning indices.

CONCLUSIONS: A clear difference in actual and perceived physical functioning between relatively active and passive patients with CFS as judged by their therapists could not be found. Future research is needed to form a consensus on how to categorize subgroups of patients with CFS.

Source: Vos-Vromans DC, Huijnen IP, Köke AJ, Seelen HA, Knottnerus JA, Smeets RJ. Differences in physical functioning between relatively active and passive patients with Chronic Fatigue Syndrome. J Psychosom Res. 2013 Sep;75(3):249-54. doi: 10.1016/j.jpsychores.2013.05.001. Epub 2013 Jun 2. https://www.ncbi.nlm.nih.gov/pubmed/23972414

A cross-cultural perspective on psychological determinants of chronic fatigue syndrome: a comparison between a Portuguese and a Dutch patient sample

Abstract:

BACKGROUND: Few studies focus on cross-cultural differences in Chronic fatigue syndrome (CFS).

PURPOSE: This study aimed to (1) compare fatigue severity and impairment, somatic complaints, psychological distress, and quality of life (QoL) in a population of Portuguese and Dutch patients; (2) explore the differential contribution of behavioral and cognitive determinants of fatigue severity; and (3) investigate the relation between fatigue severity and somatic complaints on one hand and QoL on the other in both populations.

METHOD: Eighty-five female patients from Portugal (Mean age = 47.54) and 167 female CFS patients from The Netherlands (Mean age = 44.93) participated in the study. All participants were surveyed for demographic and clinical characteristics, fatigue severity, somatic symptoms, psychological distress, (physical and psychological) QoL, physical activity, behavior regulation patterns, and illness representations.

RESULTS: Cross-cultural differences were found in relation to working status, duration of fatigue symptoms, psychological distress, somatic complaints, and psychological QoL. Although behavioral characteristics and illness representations were significantly associated with fatigue severity in both Portuguese and Dutch patients, there were important differences in the determinants of CFS. Moreover, higher levels of fatigue and severity of other somatic complaints were related to poor QoL.

CONCLUSIONS: These findings show cross-cultural similarities and differences in clinical characteristics and psychological determinants of CFS that are important in view of diagnosis and treatment.

Source: Marques M, De Gucht V, Leal I, Maes S.A cross-cultural perspective on psychological determinants of chronic fatigue syndrome: a comparison between a Portuguese and a Dutch patient sample. Int J Behav Med. 2013 Jun;20(2):229-38. doi: 10.1007/s12529-012-9265-y. https://www.ncbi.nlm.nih.gov/pubmed/22972378