Background: Understanding complex psychological treatment mechanisms is important in order to refine and improve treatment. Mechanistic theories can be evaluated using mediation analysis methods. The Pacing, Graded Activity, and Cognitive Behaviour Therapy: A Randomised Evaluation (PACE) trial studied complex therapies for the treatment of chronic fatigue syndrome. The aim of the project was to study different mediation analysis methods using PACE trial data, and to make trial design recommendations based upon the findings. Methods: PACE trial data were described using summary statistics and correlation analyses. Mediation estimates were derived using: the product of coefficients approach, instrumental variable (IV) methods with randomisation by baseline variables interactions as IVs, and dual process longitudinal structural equation models (SEM). Monte Carlo simulation studies were done to further explore the behaviour of IV estimators and to examine aspects of the SEM. Results: Cognitive and behavioural measures were mediators of the cognitive behavioural and graded exercise therapies in PACE. Results were robust when accounting for correlated measurement error and different SEM structures. Randomisation by baseline IVs were weak, giving imprecise and sometimes extreme estimates, leaving their utility unclear. A flexible version of a latent change SEM with contemporaneous mediation effects and contemporaneous correlated measurement errors was the most appropriate longitudinal model. Conclusions: IV methods using interaction IVs are unlikely to be useful; designs with randomised IV might be more suitable. Longitudinal SEM for mediation in clinical trials seems a promising approach. Mediation estimates from SEM were generally robust when allowing for correlated measurement error and for different model classes. Mediation analysis in trials should be longitudinal and should consider the number and timing of measures at the design stage. Using appropriate methods for studying mediation in trials will help clarify treatment mechanisms of action and allow for their refinement, which would maximize the information gained from trials and benefit patients.

Fibromyalgia (FM) is a musculoskeletal and neurological disorder that causes constant pain, cognitive problems with short term memory, and sleep disorders. There are more females diagnosed with FM than males, and research has therefore primarily been conducted with females. Because little is known about African American males with FM, biopsychosocial theory was used in this phenomenological study to examine how African American males with FM are affected biologically, psychologically, and socially. Eight African American males diagnosed with FM were recruited from Houston, Texas and were interviewed about their lived experiences with FM, including experiences with the healthcare system, and how they used the internet to seek information about FM. Individual interview transcripts, conduct open coding, and thematic analysis led to identification of the following themes: (a) lengthy multiple medical evaluations to receive a diagnosis and various symptoms; (b) physical challenges, physical limitations, emotional issues, and cognitive issues experienced with FM; (c) limited physical and emotional support from family and friends; (d) hopeful about work and plans; (e) trust and confidence in healthcare providers and medical information obtained by asking questions; (f) limited internet search and not involved in online FM forums. The study showed that African American males with FM may experience debilitating symptoms and may use faith-based beliefs as one way to cope with FM. These results may bring positive social changes by providing caretakers with a better understanding of how FM affects the quality of life of African American males with FM, and provide new data to assist healthcare providers in diagnosing, treating, and serving this population.

Individuals with non-apparent, physical disabilities face unique social challenges from those that are encountered by the more visibly disabled. The absence of visible cues indicating physical impairment causes ambiguity in social situations, leaving the sufferer vulnerable to moral judgments and social sanctions when they are unable to embody and perform to cultural norms. This dynamic generates a closeted status that the individual must learn to navigate. Using Eve Sedgwick's "The Epistemology of the Closet," this paper deploys auto-ethnography, traditional ethnographic techniques, and literature reviews to illuminate a third space of functioning between the outwardly 'healthy' and the visibly disabled.

Human Herpesvirus 6A (HHV-6A) and 6B (HHV-6B) are ubiquitous betaherpesviruses. Both viruses are associated with a variety of adult disorders including neurological disorder, such as multiple sclerosis and chronic fatigue syndrome. HHV-6 viruses are capable of establishing latency by integration into the telomeres of the host chromosome and are transmitted in a Mendelian manner in approximately one percent of the population. To date little is known about the immunological and neurological consequences of HHV-6 inheritance. This study focused on a unique population of individuals that inherited HHV-6 and present with chronic fatigue-like symptoms, including hypersomnia, generalized fatigue, headache, and short term and long term memory impairment. The central hypothesis of this study was that active replication of HHV-6 correlates with patient symptoms. To address this aim we first looked at the reactivation of integrated HHV-6 in vitro by inducing viral replication with epigenetic modifiers trichostatin A (TSA), valproic acid, sodium butyrate, and carbamazepine, and found TSA to be an effective method of inducing reactivation of HHV-6 from its integrated form. Additionally, a reactivated HHV-6A virus isolated from a patient with inherited HHV-6 was fully sequenced and the nucleotide and amino acid sequence was compared to that of fully sequenced HHV-6 laboratory strains, as well as the inherited virus. The reactivated virus was found to be very similar to the HHV-6A GS strain; however, there was some divergence at the right end of the viral genome and regions of the genome that do not contain herpesvirus core genes. Interestingly, the sequenced reactivated virus was found to differ from the HHV-6 virus which was inherited. Finally, HHV-6 replication was assessed by performing reverse transcriptase PCR assay for the viral glycoprotein U100 in patients receiving antiviral treatment. Results indicated that short term antiviral treatment was insufficient to abrogate viral replication, while treatment of six weeks or longer eliminated viral mRNA in patient blood samples. Furthermore, sequencing of the viral mRNA and inherited viral DNA indicate that the source of the mRNA detected in patient blood samples was an exogenously acquired HHV-6 virus, as the U100 glycoprotein sequences were not identical. Together these studies indicate that although HHV-6 can be reactivated from its integrated form, individuals in this unique population harbored an exogenous HHV-6 virus, in addition to the inherited virus; we termed this condition inherited herpesvirus syndrome. The fact that these individuals are able to acquire exogenous HHV-6 viruses suggest that there may be some level of immune tolerance or immune dysfunction; we suggest that further studies focus on uncovering the immune response to HHV-6 in individuals with an inherited form of the virus.

Relacionándolo con las ideas de John Gottman y Robert Levenson, y col. (Gottman, 1993; Levenson y col., 1994), así como otros autores (Smith y Friedermann, 1998; Heffner y col., 2004); en una enfermedad crónica como el síndrome de fatiga crónica (SFC) no sólo el bienestar físico y psicológico están relacionados entre si, sino que las relaciones interpersonales son importantes en el contexto de la salud física y psicológica. Por ello, las relaciones de apoyo cercanas tendrían una influencia sustancial en la adaptación de estos pacientes a su estilo de vida restringido y a la participación en tratamientos concretos (Chowance y Binik, 1982; Radley y Green, 1986, Cordingley y col., 2001). Características interpersonales (satisfacción en la pareja), así como intrapersonales (personalidad) son importantes en la adaptación a una patología crónica, lo cual tiene una implicación a largo plazo para la salud física (Kiecolt-Glaser y Newton, 2001; Roisman y col., 2007). La capacidad funcional en pacientes con SFC estaría deteriorada y limitaría no sólo la vertiente física sino también aspectos psicológicos y sociales. De igual modo, componentes psicosociales tendrían importancia en el paciente diagnosticado de SFC y podrían, incluso, estar asociados a mayor fatiga y deterioro físico (Silver y col., 2002). En el contexto familiar, el medir de forma más específica en mujeres con SFC estos componentes permitiría ver, no sólo si la pareja influye en la fisiología de la paciente sino también si existe una relación entre parámetros funcionales de la enferma y el bienestar de su entorno inmediato. Se escogió la capacidad funcional medida a través de una prueba de esfuerzo monitorizando la respuesta cardioventilatoria para demostrar esta interacción (Blazquez y col., 2010b; 2020c). Así pues, el objetivo principal fue confirmar la interrelación entre la capacidad funcional de pacientes con SFC y aspectos psicosociales y llegar a cuantificarla y definirla. Eso justificaría un mayor uso de intervenciones psico-socio-físicas. Teniendo en cuenta que las necesidades expresadas por los pacientes no están sólo relacionadas con la sintomatología física sino principalmente con malestares psicosociales (como, por ejemplo, cambios durante el ciclo vital familiar o la aparición de una disfunción sexual en el subsistema marital), el tratamiento para el SFC debería ser multidisciplinar (Goudsmit y col., 2009; Hurwitz y col., 2010). Entrelazando dichos aspectos quizás se podría aumentar el éxito de los tratamientos no farmacológicos (Powell y col., 2001). Por ello, una vez confirmada la importancia de incluir un tipo de intervención que contemple lo psico-socio-físico, se propuso la terapia a través de la danza y el movimiento, la cual ya había demostrado su eficacia con pacientes con fibromialgia pero hasta el momento no con SFC (Bojner-Horwitz y col, 2003; Horwitz y col., 2006; Blazquez y col., 2010d).

Thesis (Ph.D.)--University of Alberta, 2010. / A thesis submitted to the Faculty of Graduate Studies and Research in partial fulfillment of the requirements for the degree of Doctor of Philosophy, Department of Public Health Sciences. Title from pdf file main screen (viewed on April 28, 2010). Includes bibliographical references.

Ohälsa i form av stress har tilltagit under de senaste decennierna. Detta har lett till en ökning av antalet individer som årligen drabbas av sjukdomen utmattningssyndrom. Detta syndrom har nyligen accepterats som en egen diagnos men har ännu ingen konkret behandlingsmetod. En del av behandlingen kan utgöras av fysisk aktivitet. Trots detta ger inte alltid fysisk aktivitet önskvärd effekt. Detta kan till viss del bero på svårigheten att uppnå balans för individer med denna diagnos. Syftet med litteraturstudien är att beskriva individens upplevelse av fysisk aktivitet som behandling vid utmattningssyndrom. Författarna har valt att göra en litteraturstudie byggd på tolv artiklar av både kvalitativ och kvantitativ ansats. Detta för att utöka kunskapen inom området. Två kategorier identifierades utifrån artiklarna: “Att leva med utmattningssyndrom” och “Fysisk aktivitet som behandlingsmetod vid utmattningssyndrom”. Nämnda kategorier belyser bland annat svårigheter i nivåanpassning av fysisk aktivitet.  Resultatet visar att om aktiviteten inte individanpassas kan detta resultera i försämring av sjukdomen.

Background and Aims: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) remains a poorly understood condition, shrouded by debate, stigma, and uncertainty. Unsurprisingly, the little available research suggests that caring for a Child or Young Person (CYP) affected by the condition can be extremely challenging. While the majority of available literature is quantitative in nature, there is some qualitative research examining the impact of having a CYP with CFS/ME on parents. However, there currently appear to be no studies examining the narratives of parents living with a CYP with CFS/ME. Therefore, this research aimed to hear how parents narrate their experiences of living with a CYP affected by CFS/ME, paying attention to how they construct their identity, and the contested condition. Methodology: This research drew on a qualitative approach that explored the narratives of the participants. A purposive sample of five parents of CYP affected by CFS/ME (5 mothers) was recruited for a single semi-structured interview. The interviews were audio-recorded, transcribed, and analysed using a narrative approach to explore what participants said and how they narrated their accounts. This was then situated within the social and cultural contexts that shaped them. Analysis and Findings: Multiple readings of the narratives allowed me to develop a summary of each individual's narrative account. These were presented, after which similarities and differences across narratives were considered. Analysis identified six areas of collective focus: 'stories of onset and diagnosis', 'stories of battle', 'stories of finding the person/people who can help', 'stories of impact', 'stories of seeking social support', and 'stories of coping and adjustment'. Participants' narratives were heavily influenced by dominant societal discourses surrounding CFS/ME and motherhood, and could be seen as a response to these narratives. Consequently, participants offered particular constructions of the condition, themselves, their CYP, and others that they had come into contact with. These findings are discussed with reference to their potential bearing for clinical practice, strengths and limitations of the methodology, and directions for future research.

Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a neurologic disease. Between 0,1-2,6% of the world’s population is estimated to have ME/CFS. Even though a lot of people are affected there is a lack of knowledge about the disease. Its symptomatology affects the whole body and is severely debilitating. It’s at utmost importance that this subject is studied so that nurses can get an increased knowledge about ME/CFS. Aim The aim was to highlight people's experiences of living with ME/CFS. Method A literature-based study based on analysis of ten qualitative scientific studies was performed. Results Four main themes and fourteen subthemes were revealed. The main themes were about changing living conditions, lack of knowledge, changes in the body and existential changes. Changes were a major part of the result and people with ME / CFS experienced that the changes could be both positive and negative. The results showed that there is a knowledge gap regarding ME / CFS, which has serious consequences for people with the diagnosis. Conclusion The conclusion of the study was that knowledge, information and support is important for people with ME / CFS. By working person-centered, the nurse can help people with ME / CFS feel better.

Background and Aims: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) remains a poorly understood condition, shrouded in uncertainty and dispute. Research suggests this context to have a profound bearing on those touched by the condition, impacting significantly on their experience and the narratives constructed thereof. However, no studies examining the narratives of partners of individuals affected by CFS/ME appear to have been carried out to date. Based upon this gap in the literature, this study sought to hear the narratives of partners of adults living with CFS/ME, giving particular consideration to the ways in which these narratives were told to an outsider, and how the outsider may have influenced the narrative. Methodology: This study drew on a qualitative approach. A purposive sample of six partners of adults affected by CFS/ME (4 men and 2 women) was recruited. Individual interviews were conducted that were audio-recorded and transcribed. Narrative analysis was used to analyse the transcripts, focusing principally on how participants narrated their accounts, as well as on the content of narratives and the narrative and discursive features that shaped the telling of the accounts. Analysis and Findings: Multiple readings of the narratives identified two areas of collective focus within participants' accounts - 'stories from then' and 'stories from now'. Some similarities in how 'stories from now' were told were seen to emerge down gender lines. Notably participants' storytelling could be seen to represent a form of response to wider narratives that purvey around CFS/ME, with participants' being observed to construct particular meanings around CFS/ME, as well as particular 'identities' of themselves, their partner, their relationship and 'others' who had played a key role in their story of living with the condition. The findings are discussed in terms of their potential bearing for clinical practice and future research endeavours. In addition, the strengths and the limitations of the research are considered.