Otitis Media in a New Mouse Model for CHARGE Syndrome with a Deletion in the Chd7 Gene

Otitis media is a middle ear disease common in children under three years old. Otitis media can occur in normal individuals with no other symptoms or syndromes, but it is often seen in individuals clinically diagnosed with genetic diseases such as CHARGE syndrome, a complex genetic disease caused by mutation in the Chd7 gene and characterized by multiple birth defects. Although otitis media is common in human CHARGE syndrome patients, it has not been reported in mouse models of CHARGE syndrome. In this study, we report a mouse model with a spontaneous deletion mutation in the Chd7 gene and with chronic otitis media of early onset age accompanied by hearing loss. These mice also exhibit morphological alteration in the Eustachian tubes, dysregulation of epithelial proliferation, and decreased density of middle ear cilia. Gene expression profiling revealed up-regulation of Muc5ac, Muc5b and Tgf-β1 transcripts, the products of which are involved in mucin production and TGF pathway regulation. This is the first mouse model of CHARGE syndrome reported to show otitis media with effusion and it will be valuable for studying the etiology of otitis media and other symptoms in CHARGE syndrome

‘ASMR’ autobiographies and the (life-)writing of digital subjectivity

For years now, a growing online subculture has been exchanging videos designed to induce ‘autonomous sensory meridian response’ (ASMR), a mysterious, blissfully relaxing tingling sensation held to alleviate anxiety, pain, insomnia and depression. Emerging from online health forums, ASMR culture today centres on YouTube, where ‘ASMRtists’ have used the feedback mechanisms built into social media platforms to refine a repertoire of ‘trigger’ techniques. Exemplifying a wider trend for using ‘ambient media’ as mood modulators and task facilitators (Roquet, 2016 Ambient Media: Japanese Atmospheres of Self. London: University of Minnesota Press.), ASMR culture’s use of the word ‘trigger’ is telling, gesturing towards what Halberstam ((2014) You Are Triggering Me! The Neo-Liberal Rhetoric of Harm, Danger and Trauma. Bully Bloggers. Available at: https://bullybloggers.wordpress.com/2014/07/05/you-are-triggering-me-the-neo-liberal-rhetoric-of-harm-danger-and-trauma/ (accessed 8 August 2018)) sees as a shift away from the Freudian notion of ‘memory as a palimpsest’ towards one of memory as ‘a live wire sitting in the psyche waiting for a spark’, whereby digital subjects become black-boxed nodes in a cybernetic circuit. This shift has serious implications for the humanities and is particularly resonant for scholars of life-writing. As McNeill ((2012) There is no “I” in network: Social networks sites and posthuman auto/biography. Biography 35(1): 65–82.) argues, digital technologies ‘complicate[] definitions of the self and its boundaries, both dismantling and sustaining the humanist subject in practices of personal narrative’ (p. 65). The resulting friction is highlighted in ‘ASMR autobiographies’: texts narrating the author’s experiences of ASMR and their discovery of online ASMR communities. Echoing familiar auto/biographical forms, from medical case histories and coming out narratives to tales of religious conversion, these texts show that the models of subjectivity we have inherited from Enlightenment philosophy, religion, psychology and Romantic literature retain some cultural purchase. But they also suggest digital media are fostering new understandings of personhood informed by cybernetics, evolutionary psychology, behaviourism and neuroscience. Focusing on works by Andrew MacMuiris, Andrea Seigel and Jon Kersey while also addressing a range of other texts, this article asks what ASMR autobiographies can tell us about digital subjectivity

Sex in the Academy/Sex in the Field: Bodies of Ethics in Activist Research

The infiltration of sex workers into academia has offered new lenses through which to understand sexual commerce. Sex work research is plagued by a history of voyeurism, victimisation and sexual tourism without sufficient regard for the lives, rights and demands of sex workers themselves. Being a sex working researcher raises multiple challenges in the field. But being in the academy brings further risks. Risks of assault, harassment and invasive questioning from colleagues are ever present when one’s naked photos are on the internet. From parental complaints to public outcry, this chapter takes a personal journey into the author’s own ethnographic research into feminist pornographies. It moves through fisting workshops to public rallies to community forums and explores how sex working researchers navigate legal risks of self-incrimination, bureaucratic requirements of human ethics committees and political risks of engaging with media, and still manage to pioneer ethical approaches in a field where practice and theory so intimately overlap

Health- and Vision-Related Quality of Life in a Randomized Controlled Trial Comparing Methotrexate and Mycophenolate Mofetil for Uveitis

PurposeTo evaluate changes in health-related and vision-related quality of life (VRQoL) among patients with noninfectious uveitis who were treated with antimetabolites.DesignSecondary analysis of a randomized controlled trial.ParticipantsPatients with noninfectious uveitis from India, the United States, Australia, Saudi Arabia, and Mexico.MethodsFrom 2013 through 2017, 216 participants were randomized to receive 25 mg weekly oral methotrexate or 1.5 g twice daily oral mycophenolate mofetil. Median changes in quality of life (QoL) were measured using Wilcoxon signed-rank tests, and differences between treatment groups were measured using linear mixed models, adjusting for baseline QoL score, age, gender, and site. Among Indian patients, VRQoL scores from a general scale (the National Eye Institute Visual Function Questionnaire [NEI-VFQ]) and a culturally specific scale (the Indian Visual Function Questionnaire [IND-VFQ]) were compared using Pearson correlation tests.Main outcome measuresVision-related QoL (NEI-VFQ and IND-VFQ) and health-related QoL (HRQoL; physical component score [PCS] and mental component score [MCS] of the Medical Outcomes Study 36-Item Short Form Survey [SF-36v2]) were measured at baseline, the primary end point (6 months or treatment failure before 6 months), and the secondary end point (12 months or treatment failure between 6 and 12 months).ResultsAmong 193 participants who reached the primary end point, VRQoL increased from baseline by a median of 12.0 points (interquartile range [IQR], 1.0-26.1, NEI-VFQ scale), physical HRQoL increased by a median of 3.6 points (IQR, -1.4 to 14.9, PCS SF-36v2), and mental HRQoL increased by a median of 3.0 points (IQR, -3.7 to 11.9, MCS SF-36v2). These improvements in NEI-VFQ, SF-36v2 PCS, and SF-36v2 MCS scores all were significant (P < 0.01). The linear mixed models showed that QoL did not differ between treatment groups for each QoL assessment (NEI-VFQ, IND-VFQ, PCS SF-36v2, and MCS SF-36v2; P > 0.05 for all). The NEI-VFQ and IND-VFQ scores for Indian participants were correlated highly at baseline and the primary and secondary end points (correlation coefficients, 0.87, 0.80, and 0.90, respectively).ConclusionsAmong patients treated with methotrexate or mycophenolate mofetil for uveitis, VRQoL and HRQoL improved significantly over the course of 1 year and did not differ by treatment allocation. These findings suggest that antimetabolites could improve overall patient well-being and daily functioning