Chronic Fatigue Syndrome (CFS) is a contested condition that generates scepticism and occupies a marginalised position within medical and social contexts. The thesis examines the illness experiences, and specifically the experiences of self, for people affected with CFS. Using qualitative inquiry, a substantive theory related to the process of self-renewal and adaptation associated with CFS is explicated. The theory encompasses the trajectory of CFS from onset to chronicity, and in exceptional instances, recovery. Illness narratives were derived from in-depth, semi-structured interviews of 19 adults, including 16 people affected with, and 3 people recovered from, CFS. Data was coded and analysed using a grounded theory approach. Analysis generated two parallel narratives that defined the illness experience of CFS: the narrative of the illness biographies and the narrative of self, specifically the struggling and diminished self seeking renewal. The illness biographies encompassed the stories of symptoms and their explanations, the encounters that ensued and their contentious milieu. The narrative of self was the primary narrative. It articulated the negative consequences to self and personhood associated with CFS, named the Violation of Self, and the consequent efforts of participants to decrease the struggle and violation by use of the Guardian Response and the Reconstructing Response. The Guardian Response provided protection and self-reclamation. The Reconstructing Response fostered self-renewal and meaning. The two narratives were bridged by the threats of CFS. That is, the illness biographies were accompanied by threats of disruption related to chronic illness, and by threats of invalidation that arose from CFS as a contested condition. In turn, these threats provided the catalyst to the violation and responses as described in the narrative of self. Under different conditions the relative strengths of violation, guardianship or reconstruction fluctuated, and it was these fluctuations that presented the participants with the ongoing struggle of CFS.

Persons with chronic fatigue syndrome (CFS) often complain of an inability to maintain activity levels and experience a variety of orthostatic symptoms such as dizziness, trembling, nausea, postural hypotension with bradycardia or tachycardia, sweating, palpitations, paleness, and syncope. Orthostatic intolerance (OI) may be defined as an inability to maintain systolic blood pressure (SBP) within 20 mmHg of resting level upon moving from a supine to upright posture. The primary objective of this study is to determine whether men and women with CFS are more susceptible to OI during a 3-stage head-up tilt (HUT) than non CFS, sedentary subjects matched by age, sex, and ethnicity. The secondary objective is to examine whether possible underlying mechanisms may be predictively associated with OI susceptibility in CFS. Possible causes of OI include autonomic nervous system (ANS) dysfunction and altered hematological profile. Thus, specific aims included within this objective are: 1) to determine whether there are differences in resting cardiovascular function {i.e., blood pressure [BP], heart rate [HR], stroke volume [SV], cardiac output [CO], total peripheral resistance [TPR], and contractility [i.e., ejection fraction (EF), fractional shortening (FS), and the velocity of circumferential shortening corrected by HR (VCFc)]}, ANS function {i.e., beta1-, beta2-, and alpha-receptor sensitivities, baroreceptor sensitivity [BRS], and vagal function [i.e., respiratory sinus arrhythmia (RSA), RSA envelope (RSAE), high frequency (HF) spectral component, and HR range]}, and hematological profile [i.e., red blood cell volume (RBCV), plasma volume (PBV), and total blood volume (TBV)] between CFS and non-CFS groups; and 2) to determine whether cardiovascular, ANS, and hematological measures differentially predicted OI during HUT. The results indicate that OI susceptibility does not occur with greater prevalence in persons with CFS than non-CFS sedentary persons. However, power analyses revealed that with a much larger sample size group differences in OI susceptibility would be found. The CFS group was distinguished from the control group only by differences in blood volume measures. There appears to be no substantive group differences in a range of cardiovascular and ANS measures; moreover, none of these measures, including the blood volume measures, accounted for differences in OI susceptibility. Compensatory mechanisms may be present in CFS for the diminished blood volume that could explain the lack of group differences in OI susceptibility. In addition, future research may find some clues relevant to CFS pathophysiology in the assessment of hemodynamic responses during orthostatic challenge in the present subjects.

Neuropsychological deficits have been implicated in Chronic Fatigue Syndrome (CFS) and there is some indication that cerebral efficiency is compromised in these patients. To further investigate the nature of this impairment, 20 patients who had received a medical diagnosis of CFS were neuropsychologically assessed and compared with age-, sex-, and education-matched controls (20 depressed and 20 healthy subjects). The test battery consisted of the Grooved Pegboard Trail Making Test, Symbol Digit Modalities Test, Auditory-Verbal Learning Test, Visual Design Learning Test, Controlled Oral Word Association Test and Paced Auditory Serial Addition Task. Additional measures included a CFS symptom checklist, SCL-90-R and Cognitive Failures Questionnaire (CFQ). Univariate statistical analysis revealed a significant difference between CFS patients and healthy individuals on only one measure; the "S" trial of the COWAT (F[2,59]=3.30, p <.05). This finding suggests the existence of subtle but detectable neuropsychological difficulty in executive or attentional mechanisms in CFS patients. Further analysis revealed that the observed finding could not be attributed to depression or medication side-effects. Although a trend of declining neuropsychological test performance was evident in moving across the spectrum of healthy, depressed, and CFS samples, this reached significance only for the CFS/depressed versus healthy comparison X22 [1] = 9.40, p < .05). The overall similarity of the neuropsychological profiles of CFS and depressed patients was noted, while an additional finding was the discrepancy between reported levels of subjective cognitive failure (CFQ) and objective neuropsychological findings in the CFS patients. The SCL-90-R profiles of the CFS and depressed patients were also found to be similar in terms of reported levels of psychological distress; however group discrimination was evident on two subscales (Somatization and Obsessive-Compulsive). Although the CFS and depressed controls did not differ with respect to levels of depression, there were some indications of a differential impact of depressive symptomatology on neuropsychological functioning. Taken together, the results of this study indicate that while subtle deficits are detectable in the neuropsychological profiles of CPS patients, the magnitude of impairment appears insufficient to significantly interfere with everyday cognitive functioning. / Thesis (Ph.D.)-University of Natal, Pietermaritzburg, 1997.

This is a study of quantitative electroencephalographic (QEEG) comodulation analysis, which is used to assist in identifying regional brain patterns associated with Chronic Fatigue Syndrome (CFS) compared to an EEG normative database. Further, this study investigates EEG patterns in depression which is found to be a highly comorbid condition to CFS. The QEEG comodulation analysis examines spatial-temporal cross-correlation of spectral estimates in the individual resting dominant frequency band. A pattern shown by Sterman and Kaiser (2001) and referred to as the Anterior Posterior Dissociation (APD) discloses a significant reduction in shared functional modulation between frontal and centro-parietal areas of the cortex. Conversely, depressed patients have not shown this pattern of activity but have disclosed a pattern of frontal Hypercomodulation localized to bilateral pre-frontal and frontal cortex. This research investigates these comodulation patterns to determine whether they exist reliably in these populations of interest and whether a clear distinction between two highly comorbid conditions can be made using this metric. Sixteen CFS sufferers and 16 depressed participants, diagnosed by physicians and a psychiatrist respectively were involved in QEEG data collection procedures. Nineteen-channel cap recordings were collected in five conditions: eyes-closed, eyes open, reading task-one, math computations task-two, and a second eyes-closed baseline. Five of the 16 CFS patients showed a clear Anterior Posterior Dissociation pattern for the eyes-closed resting dominant frequency. However, 11 participants did not show this pattern of dysregulation. Examination of the mean 8-12 Hz band spectral magnitudes across three cortical regions (frontal, central and parietal) indicated a trend of higher overall alpha levels in the parietal region in CFS patients who showed the APD pattern compared to those who did not show this pattern. All participants who showed the APD pattern were free of medication, while the majority of those absent of this pattern were using antidepressant medications. For the depressed group, all of which were medication free, 100 % of the depressed group showed a frontal Hypercomodulation pattern. Furthermore, examination of the mean 8-12 Hz band spectral magnitudes across three cortical regions disclosed a trend of high frontal alpha and a left/right asymmetry of greater voltages in the left frontal cortex. Although these samples are small, it is suggested that this method of evaluating the disorder of CFS holds promise. The fact that this pattern is not consistently represented in the CFS sample could be explained by the possibility of subtypes of CFS, or perhaps comorbid conditions. Further, the use of antidepressant medications may mask the pattern by altering the temporal characteristics of the EEG. This study, however, was able to demonstrate that the QEEG was able to parse out the regional cerebral brain differences between CFS and depressed group.

Thesis (MEd (Distance Education))--Deakin University/University of South Australia, 1993

Chronic Fatigue Syndrome (CFS) is a contested condition that generates scepticism and occupies a marginalised position within medical and social contexts. The thesis examines the illness experiences, and specifically the experiences of self, for people affected with CFS. Using qualitative inquiry, a substantive theory related to the process of self-renewal and adaptation associated with CFS is explicated. The theory encompasses the trajectory of CFS from onset to chronicity, and in exceptional instances, recovery. Illness narratives were derived from in-depth, semi-structured interviews of 19 adults, including 16 people affected with, and 3 people recovered from, CFS. Data was coded and analysed using a grounded theory approach. Analysis generated two parallel narratives that defined the illness experience of CFS: the narrative of the illness biographies and the narrative of self, specifically the struggling and diminished self seeking renewal. The illness biographies encompassed the stories of symptoms and their explanations, the encounters that ensued and their contentious milieu. The narrative of self was the primary narrative. It articulated the negative consequences to self and personhood associated with CFS, named the Violation of Self, and the consequent efforts of participants to decrease the struggle and violation by use of the Guardian Response and the Reconstructing Response. The Guardian Response provided protection and self-reclamation. The Reconstructing Response fostered self-renewal and meaning. The two narratives were bridged by the threats of CFS. That is, the illness biographies were accompanied by threats of disruption related to chronic illness, and by threats of invalidation that arose from CFS as a contested condition. In turn, these threats provided the catalyst to the violation and responses as described in the narrative of self. Under different conditions the relative strengths of violation, guardianship or reconstruction fluctuated, and it was these fluctuations that presented the participants with the ongoing struggle of CFS.

This thesis explored significant other responses to CFS/ME in association with patient illness outcomes and symptom maintenance utilising a multi-method approach; a systematic review, cross-sectional, longitudinal and momentary methods were included. The review identified empirical evidence for two potential interpersonal mechanisms. The evidence suggested that significant other beliefs and responses, dyadic relationship quality, and patient outcomes associated with each mechanism were different. Dyadic belief incongruence was also highlighted as important with respect to relationship quality. Thus, potential research questions and current methodological limitations were identified; the subsequent empirical papers presented attempted to address these. The first empirical study (Chapter 3) utilised the Expressed Emotion (EE) framework to investigate the impact of critical comments and EOI; no cross-sectional associations between EE and patient outcomes were observed. A longitudinal design was also employed to examine the predictive validity of EE. Longitudinally, high critical comments predicted higher fatigue severity; further analyses indicated that depression mediated this relationship. High EOI was also predictive of higher fatigue severity at follow-up. This was the first study to examine EE within a CFS/ME sample; the longitudinal impact of high-EE upon patient outcomes suggests that it is a potentially beneficial target for future interventions. Paper 2 (Chapter 4) sought to examine the factors that might contribute to significant other EE by examining significant other illness beliefs and dyadic belief incongruence. The results indicated that significant others rated as high-EE had stronger illness models, more negative beliefs about the consequences associated with the condition, and negative emotional representations. These findings identify those beliefs that may be particularly important for high-EE within the current patient group. Overall dyadic belief incongruence was not important for EE-rating; high-EE dyads reported similar illness beliefs, whilst low-EE significant others reported more optimistic beliefs about the condition. These findings suggest that optimistic beliefs about the condition may be better for both significant other and patient outcomes. The final empirical study (Chapter 5) examined the associations between significant other negative and solicitous responses and fluctuations in patient illness outcomes on a momentary basis. The impact of significant other responses was largely transitory; changes in patient outcomes did not extend past the current momentary assessment. Negative significant other responses were associated with momentary increases in symptom severity; patient distress partially mediated this relationship. Patient-perceived solicitous responses were associated with increased activity limitation, but reduced disability reported at the same momentary assessment. These results suggest that momentary reports capture more dynamic processes than observed in traditional cross-sectional analyses. Taken together, the findings presented within this thesis provide further evidence for the impact of significant other factors on patient outcomes. The evidence for the hypothesised mechanism associated with critical EE was consistent throughout studies. However, the evidence for the role of EOI currently requires further exploration. Finally, the results suggest that the development of significant other-focussed interventions may be beneficial for both patient and significant other outcomes.

Ph.D. / Chronic Fatigue Syndrome (CFS) is a disabling and poorly understood multisystem illness. The illness is characterised by the principal symptom of persistent or intermittent unexplained fatigue, and has physical, psychological, social and community implications. Since CFS remains unexplained by a conventional biomedical diagnosis, confusion and controversy surround the illness. The confusing and controversial issues are the diagnosis, etiology, psychiatric states and the role of psychosocial factors. The overall aim of this study was to investigate the role of certain psychosocial factors, namely personality preferences or type, coping resources, locus of control and Type A behaviour pattern (TABP), in CFS. The total sample consisted of 70 subjects from four samples, namely the CFS patient sample (n = 21), coronary heart disease (CHD) patient sample (n = 14), depression patient sample (n = 15) and healthy sample (n = 20). The CHD patient, depression patient and healthy samples were included for comparative value. The broad hypothesis was that specific personality preferences or types as well as specific coping resources, locus of control and TABP would be characteristic of the CFS patient sample. The second hypothesis was that the CFS patient sample would significantly differ from the comparative samples on these psychosocial factors. Finally, it was hypothesised that the psychosocial factors would be correlated and hence have predictive value for the development and maintenance of CFS. On the Myers-Briggs Type Indicator' s (MBTI®), the CFS patient sample was found to have an over-representation of the introversion (61.9 %), intuition (52.4 %), feeling (66.7 %) and judging (76.2 %) preferences. An analysis of the type distribution and frequencies resulted in two whole types, namely ISFJ and INFJ. A normative interpretation of the Coping Resources Inventory° (CRI©) profile revealed that the CFS patient sample's coping resources in the various domains of cognitive, social, emotional, spiritual/philosophical, physical and total resources were below the mean. The results of the Locus of Control (LOC) Questionnaire revealed that the CFS patient sample primarily utilises an internal locus of control. However, the sample was also found to have a low state of self-regulation. In comparison to the healthy sample, the CFS patient sample had a significantly higher external locus of control. These findings lead to the hypothesis that during stressful situations (such as illness), the CFS patient sample's low state of self-regulation may result in them utilising an external locus of control. The CFS patient sample was found to have a higher mean TABP score than the mean TABP score of the total sample. This sample was also found to have a significantly higher mean TABP score than the healthy sample. Hence, it was concluded that the CFS patient sample exhibited a TABP. The Mann-Whitney U tests were utilised to determine the differences between the CFS patient sample and the various comparative samples. Various of the assessed psychosocial factors were found to differ significantly. However, most of the differences were found between the coping resources of the various samples. Correlations were drawn between the various assessed dimensions to determine whether the psychosocial factors have predictive value. On the MBTI®, a preference for sensing was associated with an external locus of control whereas a preference for judging was associated with a high TABP. A high TABP was associated with a high external locus of control. An external locus of control and TABP have been identified in previous studies on chronic illnesses as predisposing and maintenance factors. Hence, it was hypothesised that a preference for sensing and for judging respectively may be personality preferences that play a role in the development and maintenance of CFS. Subsequently, a high external locus of control and a high TABP respectively were also hypothesised to be predisposing and maintenance factors. The findings of the correlations also lead to the hypothesis that CFS patients with an extraversion and a thinking preference respectively have the ability to cope more effectively with their illness and may even recover quicker. Chronic Fatigue Syndrome patients with a high internal locus of control and a high state of self-regulation were also hypothesised to have a better overall ability to cope with their illness and may hence recover quicker. The final conclusion of the study's findings was that personality preferences and type, coping resources, locus of control and TABP interact within a complex matrix of socio-behavioural and biological factors in the development and maintenance of CFS. The value of the study is the identification of individuals at risk for the development of CFS and the psychosocial factors involved in the development and maintenance of CFS. In addition to this value, the MBTI ® results can be used to alert psychologists to the issues frequently associated with each MBTI® preference and can hence assist psychologists in the psychotherapeutic treatment of CFS patients. The results of the coping resources' deficits can also assist psychologists in the design and development of stress management programmes for CFS patients.

Introduction: Activity pacing is often advised as a coping strategy for managing chronic conditions (such as chronic low back pain, chronic widespread pain and chronic fatigue syndrome/myalgic encephalomyelitis). Despite anecdotal support for activity pacing, there is limited and conflicting research evidence regarding the efficacy of this strategy. Pacing has not been clearly operationalised, and existing descriptions are diverse and include strategies that encourage both increasing and decreasing activities. Moreover, there are few validated scales to measure activity pacing. Aim: To develop an activity pacing questionnaire (APQ) for adult patients with chronic pain and/or fatigue, and to determine its psychometric properties and acceptability. Methods: The study had a three stage mixed method design. Stage I, the Delphi technique involved a three-round consensus method to develop the initial items of the APQ using an expert panel of patients and clinicians. Stage II, the psychometric study, implemented a cross-sectional questionnaire design study, involving a large sample of patients with chronic conditions. This stage assessed the underlying pacing themes of the APQ using factor analysis, internal and test-retest reliability using Cronbach’s alpha and intraclass correlations (ICCs); and validity using correlations with validated measures of pain, fatigue, anxiety, depression, avoidance, and mental and physical function. Stage III, the acceptability study, explored patients’ opinions of the APQ, together with the concept of activity pacing via telephone interviews. The qualitative interview data were analysed using framework analysis. Results: Forty-two participants completed Stage I, the Delphi technique (4 patients, 3 nurses, 26 physiotherapists and 9 occupational therapists). The resulting APQ contained 38 questions involving a number of different facets, including breaking down tasks, gradually increasing activities and setting goals. Stage II, the psychometric study, was completed by 311 patients, of whom 69 were involved in a test-retest analysis. Following factor analysis, eight items were removed from the APQ. Five themes of pacing were identified in the 30-item APQ: Activity limitation, Activity planning, Activity progression, Activity consistency and Activity acceptance. These demonstrated satisfactory internal consistency, test-retest reliability, and construct validity against validated measures. Activity limitation, Activity planning, Activity progression and Activity acceptance correlated with worse symptoms, and Activity consistency correlated with improved symptoms. Sixteen patients participated in Stage III, the acceptability interviews. The APQ was found to be generally acceptable. Four activity behaviour typologies emerged through the interviews: Task avoidance, Task persistence, Task fluctuation (boom-bust) and Task modification (activity pacing).Conclusion: This is the first known study that has engaged both patients and clinicians in the development of an activity pacing questionnaire. Developed to be widely used across a heterogeneous group of patients with chronic pain and/or fatigue, the APQ is multifaceted, comprehensive and contains more themes of pacing than existing pacing subscales.

Chronic Fatigue Syndrome (CFS) is a debilitating illness that is characterized by pervasive fatigue, sleep disturbance, neurocognitive problems, joint and muscle pain and numerous other symptoms. Results from CFS treatment studies are equivocal. The purpose of this study was to examine the effects of Ampligen® therapy on immune function and functional capacity in a group of patients with CFS. Natural killer cell number and activity, the activity of the 2-SA pathway, and results of serial cardiopulmonary exercise tests were examined for a total of seven subjects (n=7). A key finding was the normalization of RNase L. Only one subject demonstrated both a normalization in RNase L and increase in exercise performance. Trends in NK cell activity were difficult to determine. Improvements in functional capacity as measured by peak V02were seen in five subjects, but these improvements were minor. The expected improvement in both the immune system as measured by RNase L and NK cell function, and improvement in functional capacity were not seen in this study. This confirms that CFS is a very complicated syndrome and that more research is needed. Ampligen® may have been responsible for the RNase L normalization observed in some patients but NK cells seemed unaffected. It could be that Ampligen® is helping the immune system fight viruses present in the CFS subjects. Improvements in peak V02 were small but deconditioning in subjects might be a possible explanation. The exact cause of CFS remains unknown but with continued research it may yet be possible to increase our understanding of CFS.