Fatigue-related Symptoms Research Articles

Hand Grip Strength as a Clinical Biomarker for ME/CFS and Disease Severity.

Background: The diagnosis of myalgic encephalomyelitis (ME/CFS) in research and clinical practice has largely relied on clinical history, which can be subjective in nature. Clinical signs are often subtle, overlap with other conditions, and are not formally included as part of diagnostic workup. The characterization of clinical signs and biomarkers is needed for better diagnosis and classification of patients and to monitor treatment response. Hand grip strength (HGS) has been used as an objective measure of muscle strength and fatigue, which is a primary symptom of ME/CFS. We assessed the potential usefulness of HGS as a diagnostic marker in ME/CFS.Methods: We compared HGS measurements from participants in the UK ME/CFS Biobank, with groups consisting of people with ME/CFS of differing severity (n = 272), healthy (n = 136), multiple sclerosis (n = 76) controls, and others with chronic fatigue not meeting the diagnosis of ME/CFS (n = 37). We correlated the maximum and minimum of, and differences between, 3 repeated HGS measurements with parameters of disease severity, including fatigue and pain analog scales, and physical and mental component summaries from the SF-36v2TM questionnaire across recruitment groups.Results: HGS indicators were associated with having ME/CFS, with magnitudes of association stronger in severely affected than in mild/moderately affected patients. Compared with healthy controls, being severely affected was associated with a reduction in minimum HGS of 15.3 kg (95%CI 19.3–11.3; p < 0.001), while being mild/moderately affected was associated with a 10.5 kg (95%CI 13.2–7.8; p < 0.001) reduction. The association persisted after adjusting for age, sex and body mass index. ME/CFS cases also showed lower values of maximum HGS and significant drops in values from the first to second and third trials, compared to other study groups. There were significant correlations between HGS indicators and clinical parameters of disease severity, including fatigue analog scale (Spearman's Rho = −0.40, p < 0.001), pain analog scale (Rho = −0.38, p < 0.001), and physical component summary (Rho = 0.42, p < 0.001).Discussion: HGS is markedly reduced in ME/CFS, particularly in patients with more severe disease, and may indicate muscle and fatigue related symptoms. HGS is a potential diagnostic tool in ME/CFS, and could also be used to enhance patient phenotyping and as an outcome measure following interventions

Fatigue is Highly Prevalent in Patients with Asthma and Contributes to the Burden of Disease.

The 2018 update of the Global Strategy for Asthma Management and Prevention does not mention fatigue-related symptoms. Nevertheless, patients with asthma frequently report tiredness, lack of energy, and daytime sleepiness. Quantitative research regarding the prevalence of fatigue in asthmatic patients is lacking. This retrospective cross-sectional study of outpatients with asthma upon referral to a chest physician assessed fatigue (Checklist Individual Strength-Fatigue (CIS-Fatigue)), lung function (spirometry), asthma control (Asthma Control Questionnaire (ACQ)), dyspnea (Medical Research Council (MRC) scale), exercise capacity (six-minute walk test (6MWT)), and asthma-related Quality-of-Life (QoL), Asthma Quality of Life Questionnaire (AQLQ) during a comprehensive health-status assessment. In total, 733 asthmatic patients were eligible and analyzed (47.4 ± 16.3 years, 41.1% male). Severe fatigue (CIS-Fatigue ≥ 36 points) was detected in 62.6% of patients. Fatigue was not related to airflow limitation (FEV1, ρ = −0.083); was related moderately to ACQ (ρ = 0.455), AQLQ (ρ = −0.554), and MRC (ρ = 0.435; all p-values < 0.001); and was related weakly to 6MWT (ρ = −0.243, p < 0.001). In stepwise multiple regression analysis, 28.9% of variance in fatigue was explained by ACQ (21.0%), MRC (6.5%), and age (1.4%). As for AQLQ, 42.2% of variance was explained by fatigue (29.8%), MRC (8.6%), exacerbation rate (2.6%), and age (1.2%). Severe fatigue is highly prevalent in asthmatic patients; it is an important determinant of disease-specific QoL and a crucial yet ignored patient-related outcome in patients with asthma.

The development and initial validation of the Fatigue Sensitivity Questionnaire

ABSTRACTCurrently, there is poor understanding of fatigue and the possible psychological conditions that may underlie chronic fatigue. Although substantial work has been directed to better clinically address fatigue, no work has explored individual differences in expectations or perceptions of the negative consequences associated with fatigue-related symptoms. The goals of this study were to (a) develop and (b) validate a measure of expectations or perceptions of the negative consequences associated with fatigue-related symptoms (e.g. fatigue sensitivity) across two independent samples (N = 1,827; 73.1% female; Mage = 21.68; SD = 4.54) of young adults. Results supported a 10-item measure of fatigue sensitivity, entitled the Fatigue Sensitivity Questionnaire (FSQ). The FSQ demonstrated unidimensionality, excellent internal consistency, and strong convergent and discriminant validity. Overall, the 10-item scale offers a single score that can be employed to measure fatigue sensitivity. Clinically, the FSQ may be a brief, informative, and easily disseminated measure in better understanding and capturing expectations or perceptions about the negative consequences of fatigue. As a research tool, the use of the FSQ may provide broader understanding of vulnerability factors that may influence fatigue-related health outcomes. Future research is needed to test the validity of the FSQ in other samples.

Effects of audiovisual stimuli on psychological and psychophysiological responses during exercise in adults with obesity

ABSTRACTThe present experiment sought to further understanding of the effects of personalised audiovisual stimuli on psychological and psychophysiological responses during exercise in adults with obesity. Twenty-four participants (Mage = 28.3, SD = 5.5 years; MBMI = 32.2, SD = 2.4) engaged in self-paced exercises on a recumbent cycle ergometer and three conditions (sensory stimulation [ST], sensory deprivation [DE], and control [CO]) were administered. Perceptual (attentional focus and perceived exertion), affective (affective state and perceived activation), and psychophysiological (heart rate variability) parameters were monitored throughout the exercise bouts. A one-way repeated measures analysis of variance was used to compare self-reported and psychophysiological variables (main and interaction effects [5 Timepoints × 3 Conditions]). The results indicate that ST increased the use of dissociative thoughts throughout the exercise session (ηp2 = .19), ameliorated fatigue-related symptoms (ηp2 = .15) and elicited more positive affective responses (ηp2 = .12) than CO and DE. Accordingly, personally-compiled videos are highly effective in ameliorating exertional responses and enhancing affective valence during self-paced exercise in adults with obesity. Audiovisual stimuli could be used during the most critical periods of the exercise regimen (e.g., first training sessions) when individuals with obesity are more likely to focus on fatigue-related sensations.

Cerebral effects of music during isometric exercise: An fMRI study.

A block-design experiment was conducted using fMRI to examine the brain regions that activate during the execution of an isometric handgrip exercise performed at light-to-moderate-intensity in the presence of music. Nineteen healthy adults (7 women and 12 men; Mage = 24.2, SD = 4.9 years) were exposed to an experimental condition (music [MU]) and a no-music control condition (CO) in a randomized order within a single session. Each condition lasted for 10 min and participants were required to execute 30 exercise trials (i.e., 1 trial = 10 s exercise + 10 s rest). Attention allocation, exertional responses, and affective changes were assessed immediately after each condition. The BOLD response was compared between conditions to identify the combined effects of music and exercise on neural activity. The findings indicate that music reallocated attention toward task-unrelated thoughts (d = 0.52) and upregulated affective arousal (d = 0.72) to a greater degree when compared to a no-music condition. The activity of the left inferior frontal gyrus (lIFG) also increased when participants executed the motor task in the presence of music (F = 24.65), and a significant negative correlation was identified between lIFG activity and perceived exertion for MU (limb discomfort: r = -0.54; overall exertion: r = -0.62). The authors hypothesize that the lIFG activates in response to motor tasks that are executed in the presence of environmental sensory stimuli. Activation of this region might also moderate processing of interoceptive signals - a neurophysiological mechanism responsible for reducing exercise consciousness and ameliorating fatigue-related symptoms.

Cancer-related fatigue, a problem in and after oncological rehabilitation

Cancer-related fatigue is the most distressing symptom of oncological patients with cancer-therapy, also in and after rehabilitation. The aim of our study was to adapt oncological rehabilitation to this symptom, so we developed and evaluated a fatigue-related management module called FaM-Modul for rehabilitation. The rehabilitation team developed and discussed the FaM-Modul. For study we used a sequential control group design with a control group (CG: n = 189) and an intervention group (IG: n = 194). Only participants with substantial fatigue-related problems in oncological rehabilitation were recruited. The effects of the FaM-Modul in the intervention group were evaluated by questionnaires asking for the fatigue-related therapies and fatigue-related outcomes (MFI: general- (GF), physical- (PF), mental fatigue (MF); health-related quality of life (QoL-EORTC)) at the beginning (t1), the end (t2) and 3 months after oncological rehabilitation (t3). Non-parametric-tests and analysis of covariance with repeated measures were applied to investigate differences between CG and IG. The FaM-Modul consists additional to standard oncological rehabilitation of psychosocial, nutritional and exercise therapies. The IG evaluated both contents ( P < 0.001) and organization ( P < 0.001) better than the CG with standard oncological rehabilitation and they were more pleased with the fatigue-therapies ( P < 0.001). There were improvements of the outcomes from t1 to t2 in both groups. However, from t1 to t3 the IG showed reductions in GF ( P < 0.05), PF ( P < 0.01) and MF ( P < 0.01) and an increase in QoL ( P < 0.01) compare to the CG. Also standard oncological rehabilitation is successful to reduce fatigue-related symptoms of oncological patients in rehabilitation, but not after discharge. With a symptom-oriented module, developed by the rehabilitation team we can reduce fatigue-related symptoms until 3 months after discharge. The FaM-Modul completes standard rehabilitation therapies and supports rehabilitation. A controlled and multi-center study should be carried out to verify these results.

Cognitive Impact of Fatigue in Forensic Neuropsychology Context

Physical and mental fatigue are common factors affecting function and recovery in litigated injuries and illnesses. Despite the high prevalence of fatigue-related symptoms and anticipated impact on cognitive functioning, forensic neuropsychological assessments are often challenged by the following approaches to the evaluation of fatigue: (1) confusing physical and mental fatigue; (2) referencing fatigue as a factor in existence but disregarding its specific cognitive impact; (3) over-attribution of all identified problems to fatigue; and (4) neglecting the impact of fatigue on effort in testing. In the context of a wide range of idiosyncratic approaches applied by neuropsychologists with respect to the significance of fatigue factors and the role of the assessor in accounting for them, there is a risk of confusion. Yet, impairments caused by fatigue can be disabling and resistant to treatment, and even more so when the treatment is based on incorrect diagnostic, causality, and prognostic assumptions. The current review will focus on integrating the available empirical evidence from neuroscience and neuropsychology regarding our current understanding of the cognitive impact of fatigue. Our critical review will emphasize the implications of the accumulating new evidence for forensic assessment determinations regarding causality, diagnosis, and impact on function, as well as prognosis and treatment. To this end, electronic search engines including PubMed, PsycINFO, and Google Scholar (up to January 2018) have been screened and reviewed both for the neuroscience and neuropsychological literature related to mental fatigue.

Psychophysiological effects of audiovisual stimuli during cycle exercise

Immersive environments induced by audiovisual stimuli are hypothesised to facilitate the control of movements and ameliorate fatigue-related symptoms during exercise. The objective of the present study was to investigate the effects of pleasant and unpleasant audiovisual stimuli on perceptual and psychophysiological responses during moderate-intensity exercises performed on an electromagnetically braked cycle ergometer. Twenty young adults were administered three experimental conditions in a randomised and counterbalanced order: unpleasant stimulus (US; e.g. images depicting laboured breathing); pleasant stimulus (PS; e.g. images depicting pleasant emotions); and neutral stimulus (NS; e.g. neutral facial expressions). The exercise had 10 min of duration (2 min of warm-up + 6 min of exercise + 2 min of warm-down). During all conditions, the rate of perceived exertion and heart rate variability were monitored to further understanding of the moderating influence of audiovisual stimuli on perceptual and psychophysiological responses, respectively. The results of the present study indicate that PS ameliorated fatigue-related symptoms and reduced the physiological stress imposed by the exercise bout. Conversely, US increased the global activity of the autonomic nervous system and increased exertional responses to a greater degree when compared to PS. Accordingly, audiovisual stimuli appear to induce a psychophysiological response in which individuals visualise themselves within the story presented in the video. In such instances, individuals appear to copy the behaviour observed in the videos as if the situation was real. This mirroring mechanism has the potential to up-/down-regulate the cardiac work as if in fact the exercise intensities were different in each condition.

Daytime Sleepiness, Exertion Fatigue, and Task Vigilance in Persons with Aphasia

Daytime Sleepiness, Exertion Fatigue, and Task Vigilance in Persons with Aphasia

Longitudinal outcomes associated with significant other responses to chronic fatigue and pain.

This study investigated significant others' behavior associated with fatigue, pain, and mental health outcomes among 68 individuals with chronic fatigue (43% also had fibromyalgia) over 18 months. More negative significant others' responses were associated with more pain, poorer physical and mental health, and more fatigue-related symptoms over time. More fibromyalgia tender points covaried with more solicitous significant others' responses over time. Better mental health covaried with more distracting significant others' responses over time. The results are discussed in terms of theoretical models of the role of perceived significant others' responses on patient outcomes and recommendations for future research.

Personalized, bilateral whole-body somatosensory cortex stimulation to relieve fatigue in multiple sclerosis

Background: The patients suffering from multiple sclerosis (MS) often consider fatigue the most debilitating symptom they experience, but conventional medicine currently offers poorly efficacious therapies. Objective: We executed a replication study of an innovative approach for relieving MS fatigue. Methods: According to the sample size estimate, we recruited 10 fatigued MS patients who received 5-day transcranial direct current stimulation (tDCS) in a randomized, double-blind, Sham-controlled, crossover study, with modified Fatigue Impact Scale (mFIS) score reduction at the end of the treatment as primary outcome. A personalized anodal electrode, shaped on the magnetic resonance imaging (MRI)-derived individual cortical folding, targeted the bilateral whole-body primary somatosensory cortex (S1) with an occipital cathode. Results: The amelioration of fatigue symptoms after Real stimulation (40% of baseline) was significantly larger than after Sham stimulation (14%, p = 0.012). Anodal whole body S1 induced a significant fatigue reduction in mildly disabled MS patients when the fatigue-related symptoms severely hampered their quality of life. Conclusion: This second result in an independent group of patients supports the idea that neuromodulation interventions that properly select a personalized target might be a suitable non-pharmacological treatment for MS fatigue.

Activity patterns in response to symptoms in patients being treated for chronic fatigue syndrome: An experience sampling methodology study.

Objective: Cognitive–behavioral models of chronic fatigue syndrome (CFS) propose that patients respond to symptoms with 2 predominant activity patterns—activity limitation and all-or-nothing behaviors—both of which may contribute to illness persistence. The current study investigated whether activity patterns occurred at the same time as, or followed on from, patient symptom experience and affect. Method: Twenty-three adults with CFS were recruited from U.K. CFS services. Experience sampling methodology (ESM) was used to assess fluctuations in patient symptom experience, affect, and activity management patterns over 10 assessments per day for a total of 6 days. Assessments were conducted within patients’ daily life and were delivered through an app on touchscreen Android mobile phones. Multilevel model analyses were conducted to examine the role of self-reported patient fatigue, pain, and affect as predictors of change in activity patterns at the same and subsequent assessment. Results: Current experience of fatigue-related symptoms and pain predicted higher patient activity limitation at the current and subsequent assessments whereas subjective wellness predicted higher all-or-nothing behavior at both times. Current pain predicted less all-or-nothing behavior at the subsequent assessment. In contrast to hypotheses, current positive affect was predictive of current activity limitation whereas current negative affect was predictive of current all-or-nothing behavior. Both activity patterns varied at the momentary level. Conclusions: Patient symptom experiences appear to be driving patient activity management patterns in line with the cognitive–behavioral model of CFS. ESM offers a useful method for examining multiple interacting variables within the context of patients’ daily life.

What quality-of-life issues do women with ductal carcinoma in situ (DCIS) consider important when making treatment decisions?

To explore quality-of-life (QOL) issues considered important when deciding on treatment for ductal carcinoma in situ (DCIS). Breast Cancer Network of Australia members diagnosed with DCIS in the past 5years (self-identified) participated in an online survey (Sep-Nov 2015). From a list of 74 QOL issues, participants selected all issues they experienced during DCIS diagnosis, treatment or recovery, then the issues they felt important to making a DCIS treatment decision, and completed the Health Literacy Questionnaire (HLQ). Associations between QOL issues and self-reported treatment received were assessed with χ 2 tests. The primary analysis included 38 participants treated with breast-conserving surgery (n=15), mastectomy (n=23), and/or radiotherapy (n=14). Fatigue-related symptoms (82%) and "fear of progression" (50%) were the most frequently-experienced issues. When deciding on DCIS treatment, the most important consideration was "fear of progression" (50%). A higher proportion of mastectomy (compared to non-mastectomy) patients considered "difficultly looking at yourself naked" (p=0.03). Radiotherapy (compared to non-radiotherapy) patients were more likely to consider "feeling unwell" important (p=0.006). Results were similar in a sensitivity analysis involving all 101 respondents (i.e., including 63 respondents who reported receiving chemotherapy, endocrine therapy, and/or Herceptin, suggesting that they may have been treated for invasive breast cancer). Health literacy was high across all nine HLQ scales. Fear of progression is a key consideration in DCIS treatment decision making for women with high health literacy. QOL treatment considerations differed by treatments received. Women diagnosed with DCIS may benefit from evidence about QOL to inform treatment decision making.

Current status and hotspots analysis of nursing for cancer symptom cluster based on Web of Science database

Objective To analyze the international current status and hotspots of nursing for cancer symptom cluster and provide references for the cancer nursing in China. Methods We searched the Web of Science database and restricted the literature time from the database establishment to 30 May 2016. The retrieval results had been guided into InCites database and bibliographic co-occurrence system, and the implementation of literature metrology and social network analysis were used to analyze the publishing years, core writers, core journals, country/region distributions, etc. Results A total of 2 408 papers wrote by 8 171 authors from 62 regions. The amount of papers showed a trend of rising rapidly year by year, especially in recent 10 years. We selected 17 core authors, and most of them came from the University of California. Four core journals were found, including Cancer Nursing, Oncology Nursing Forum, European Journal of Cancer and European Journal of Oncology Nursing. The United States was the most active region and had published 1 282 papers (53.24%). China, included HongKong, Taiwan and China mainland, had published 197 papers (8.18%). The hot spots were following: (1)the symptoms group analysis and symptom management of breast cancer and lung cancer; (2)the study about fatigue-related symptoms, especially the fatigue with pain, sleep disorders or anxiety/depression; (3)the interaction relationship between symptom clusters and quality of life, functional status, emotional status. Conclusions Symptom clusters has received world-wide attention. However, correlative research starts late in China, which is in primary stage. Chinese scholars can draw lessons from international advanced technology and theory to promote the development of symptom clusters in China. Key words: Bibliometrics; Nursing; Neoplasms; Symptom Cluster

Cerebral mechanisms underlying the effects of music during a fatiguing isometric ankle-dorsiflexion task.

The brain mechanisms by which music-related interventions ameliorate fatigue-related symptoms during the execution of fatiguing motor tasks are hitherto under-researched. The objective of the present study was to investigate the effects of music on brain electrical activity and psychophysiological measures during the execution of an isometric fatiguing ankle-dorsiflexion task performed until the point of volitional exhaustion. Nineteen healthy participants performed two fatigue tests at 40% of maximal voluntary contraction while listening to music or in silence. Electrical activity in the brain was assessed by use of a 64-channel EEG. The results indicated that music downregulated theta waves in the frontal, central, and parietal regions of the brain during exercise. Music also induced a partial attentional switching from associative thoughts to task-unrelated factors (dissociative thoughts) during exercise, which led to improvements in task performance. Moreover, participants experienced a more positive affective state while performing the isometric task under the influence of music.

Symptom clustering in hospitalised older palliative cancer patients: A cross-sectional study

BackgroundAccurate detection of symptoms is essential in palliative care. Identification of clustering of symptom is valuable to develop target interventions. This area is largely understudied in older palliative cancer patients. ObjectivesTo identify symptom clustering in older palliative cancer patients, and patient groups based on the clustering of symptoms, and to evaluate the difference in functional dependence and experiencing life as not meaningful between the identified patient groups. DesignA cross-sectional study. SettingGeriatric and non-geriatric wards of seven acute care hospitals. Participants400 palliative cancer patients aged 65 years and older. MethodsSymptoms were collected using a validated instrument which assesses physical, psychological, functional, social, and existential symptoms by means of a structured interview with a researcher. An agglomerative hierarchical clustering analysis was used to analyse the data. ResultsThe cluster analysis revealed five groups of symptoms: (1) urological and gastrointestinal symptoms, and their treatment complications, (2) psychological and existential symptoms, (3) pain, constipation, sleeplessness and airway problems, (4) functionality problems, and (5) fatigue-related symptoms. Three patient groups were identified: (1) symptom-free group, (2) physical discomfort group, and (3) physical and psychological discomfort group. In the last group, significant more patients had a geriatric risk profile and less of them received chemotherapy. Patients in this group were more often functionally dependent and experienced their life as not meaningful. ConclusionFive groups of symptoms were identified. Three patient groups were identified which reported different levels of functionality and experiencing life as meaningful. Healthcare professionals should be triggered to detect symptom clusters and be alert to the presence of the other symptoms in the cluster when identifying one symptom. They should also be alert to patients with a geriatric risk profile because of their higher risk of experiencing physical and psychological symptoms and the influence these symptoms have on being functionally dependent and experiencing life as not meaningful.

Multiple sclerosis fatigue relief by bilateral somatosensory cortex neuromodulation

Multiple sclerosis-related fatigue is highly common and often refractory to medical therapy. Ten fatigued multiple sclerosis patients received two blocks of 5-day anodal bilateral primary somatosensory areas transcranial direct current stimulation in a randomized, doubleblind sham-controlled, cross-over study. The real neuromodulation by a personalized electrode, shaped on the MRderived primary somatosensory cortical strip, reduced fatigue in all patients, by 26% in average ( p = 0.002), which did not change after sham ( p = 0.901). Anodal tDCS over bilateral somatosensory areas was able to relief fatigue in mildly disabled MS patients, when the fatigue related symptoms severely hamper their quality of life. These small-scale study results support the concept that interventions modifying the sensorimotor network activity balances could be a suitable non-pharmacological treatment for multiple sclerosis fatigue.

L-carnitine supplementation for the management of fatigue in patients with hypothyroidism on levothyroxine treatment: a randomized, double-blind, placebo-controlled trial.

Hypothyroid patients experience fatigue-related symptoms despite adequate thyroid hormone replacement. Thyroid hormone plays an essential role in carnitine-dependent fatty acid import and oxidation. We investigated the effects of L-carnitine supplementation on fatigue in patients with hypothyroidism. In total, 60 patients (age 50.0 ± 9.2 years, 3 males, 57 females) who still experienced fatigue (fatigue severity scale [FSS] score ≥ 36) were given L-carnitine (n = 30, 990 mg L-carnitine twice daily) or placebo (n = 30) for 12 weeks. After 12 weeks, although neither the FSS score nor the physical fatigue score (PFS) changed significantly, the mental fatigue score (MFS) was significantly decreased by treatment with L-carnitine compared with placebo (from 4.5 ± 1.9 to 3.9 ± 1.5 vs. from 4.2 ± 1.8 to 4.6 ± 1.6, respectively; P < 0.01). In the L-carnitine group, 75.0%, 53.6%, and 50.0% of patients showed improvement in the FSS score, PFS, and MFS, respectively, but only 20.0%, 24.0%, and 24.0%, respectively, did so in the placebo group (all P < 0.05). Both the PFS and MFS were significantly improved in patients younger than 50 years and those with free T3 ≥ 4.0 pg/mL by treatment with L-carnitine compared with placebo. Additionally, the MFS was significantly improved in patients taking thyroid hormone after thyroid cancer surgery. These results suggest that L-carnitine supplementation may be useful in alleviating fatigue symptoms in hypothyroid patients, especially in those younger than 50 years and those who have hypothyroidism after thyroidectomy for thyroid cancer (ClinicalTrials.gov: NCT01769157).

Pilot Study of Natural Killer Cells in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis and Multiple Sclerosis.

Patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and multiple sclerosis (MS) suffer from debilitating fatigue which is not alleviated by rest. In addition to the fatigue-related symptoms suffered by patients with CFS/ME and MS, dysfunction of the immune system and, in particular, reduced natural killer (NK) cell cytotoxic activity has also been reported in CFS/ME and MS. The purpose of this pilot study was to compare NK cellular mechanisms in patients with CFS/ME and MS to investigate potential dysfunctions in the NK cell activity pathway. Flow cytometry protocols assessed CD56(dim) CD16(+) and CD56(bright) CD16(+/-) NK cell expression of adhesion molecules, NK activating and inhibiting receptors, NK cell maturation and lytic proteins. All participants in this study were female and included 14 patients with CFS/ME, nine patients with MS and 19 non-fatigued controls. The patient groups and the non-fatigued controls were not taking any immunosuppressive or immune-enhancing medications. In the MS cohort, KIR2DL5 was significantly increased on CD56(bright) CD16(+/-) NK cells and expression of CD94 was significantly increased on CD56(dim) CD16(+) NK cells in comparison with the controls. Co-expression of CD57 and perforin was significantly increased on CD56(dim) CD16(+) NK cells from patients with CFS/ME compared to the MS and non-fatigued control participants. The results from this pilot study suggest that NK cells from patients with CFS/ME and MS may have undergone increased differentiation in response to external stimuli which may affect different mechanisms in the NK cell cytotoxic activity pathway.

Concept Elicitation Within Patient-Powered Research Networks: A Feasibility Study in Chronic Lymphocytic Leukemia

ObjectivesTo explore the feasibility of using social media–based patient networks to gather qualitative data on patient-reported outcome (PRO) concepts relevant to chronic lymphocytic leukemia (CLL). MethodsBetween August and November 2013, US-residing members of the PatientsLikeMe online CLL patient community completed open-ended web-based surveys designed to elicit descriptions of CLL symptoms, impacts, and treatment-related perceptions. Qualitative telephone follow-up interviews were conducted with a subsample of respondents. Survey responses and interview transcripts were coded for qualitative analysis using Atlas.ti. ResultsFifty survey responses were included in the analyses. Participants were age 60.5 ± 6.9 years, 54% female, and 96% white. When surveyed, 20% were receiving current treatment, 16% were in remission, and 64% were treatment-naïve. Among respondents, 369 descriptions of CLL symptoms were coded. Fatigue-related symptoms were expressed most frequently, with 54% reporting “fatigue,” “tiredness,” or both in their responses. These concepts were followed by night sweats (38%), swollen lymph nodes (32%), and frequent infections (28%). Among impacts of CLL, worry and fear (66% of respondents), depressed feelings (52%), and work limitations (50%) were noted most frequently. ConclusionsSurvey results identified constitutional symptoms of CLL included in existing PRO instruments and the literature. Although the findings suggest that qualitative data obtained through social media applications can be potentially useful in supporting concept identification for newly developed PRO instruments, they also indicate that online approaches alone may not be sufficient to achieve efficient and exhaustive concept elicitation. Further research is needed to identify whether the results can support content validity in the same way as established qualitative research methods.