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The unwinding of the miracle : a memoir of life, death, and everything that comes after
\"Born blind in Vietnam, Julie Yip-Williams narrowly escaped euthanasia by her grandmother, only to then flee the political upheaval of the late 1970s with her family. Loaded into a rickety boat with three hundred other refugees, Julie made it to Hong Kong and, ultimately, America, where a surgeon at UCLA gave her partial sight. Against all odds, she became a Harvard-educated lawyer, with a husband, a family, a life. Then, at age thirty-seven, with two little girls at home, Julie was diagnosed with terminal metastatic colon cancer, and a different journey began. The Unwinding of the Miracle is the story of a vigorous life refracted through the prism of imminent death. Motherhood, marriage, ambition, love, wanderlust, tennis, grief, jealousy, anger, comfort, pain, disease--there is simply nothing this book is not about. Growing out of a blog Julie has kept through the past four years of her life (undertaken because she couldn't find the guidance she needed through her disease), this is the story of a life lived so well, and cut too short. It is inspiring and instructive, delightful and shattering. It is a book of indelible moments, seared deep. With glorious humor, beautiful and bracing honesty, and the cleansing power of well-deployed anger, Julie Yip-Williams has set the stage for her lasting legacy and one final miracle: the story of her life\"-- Provided by publisher.
Book
The multiplex model of the genetics of Alzheimer’s disease
Genes play a strong role in Alzheimer’s disease (AD), with late-onset AD showing heritability of 58–79% and early-onset AD showing over 90%. Genetic association provides a robust platform to build our understanding of the etiology of this complex disease. Over 50 loci are now implicated for AD, suggesting that AD is a disease of multiple components, as supported by pathway analyses (immunity, endocytosis, cholesterol transport, ubiquitination, amyloid-β and tau processing). Over 50% of late-onset AD heritability has been captured, allowing researchers to calculate the accumulation of AD genetic risk through polygenic risk scores. A polygenic risk score predicts disease with up to 90% accuracy and is an exciting tool in our research armory that could allow selection of those with high polygenic risk scores for clinical trials and precision medicine. It could also allow cellular modelling of the combined risk. Here we propose the multiplex model as a new perspective from which to understand AD. The multiplex model reflects the combination of some, or all, of these model components (genetic and environmental), in a tissue-specific manner, to trigger or sustain a disease cascade, which ultimately results in the cell and synaptic loss observed in AD.
Journal Article
A sleep-inducing gene, nemuri, links sleep and immune function in Drosophila
Sleep remains a major mystery of biology. In particular, little is known about the mechanisms that account for the drive to sleep. In an unbiased screen of more than 12,000 Drosophila lines, we identified a single gene, nemuri, that induces sleep. The NEMURI protein is an antimicrobial peptide that can be secreted ectopically to drive prolonged sleep (with resistance to arousal) and to promote survival after infection. Loss of nemuri increased arousability during daily sleep and attenuated the acute increase in sleep induced by sleep deprivation or bacterial infection. Conditions that increase sleep drive induced expression of nemuri in a small number of fly brain neurons and targeted it to the sleep-promoting, dorsal fan-shaped body. We propose that NEMURI is a bona fide sleep homeostasis factor that is particularly important under conditions of high sleep need; because these conditions include sickness, our findings provide a link between sleep and immune function.
Journal Article
The gift of recovery : 52 mindful ways to live joyfully beyond addiction
\"Recovery from addiction doesn't happen all at once -- it's something that must be practiced, day by day and moment to moment. In good moments -- when things are going well in your life -- your recovery may feel easy, like second nature. But in moments of stress, confusion, temptation, or pain, you need simple, go-to strategies to maintain your healthy recovery. [This book] offers fifty-two in-the-moment mindfulness skills to help you cope with daily stress and stay grounded in your recovery. You'll find powerful advice to help you navigate relationships, take time for self-care, and manage intense emotions that can get in the way of feeling better. Recovering from addiction is hard and sometimes lonely -- and it takes a lot of courage. This gentle, easy-to-use book will guide you as you continue to take steps toward your recovery\" -- Back cover.
Book
Conceptual framework for personal recovery in mental health: systematic review and narrative synthesis
No systematic review and narrative synthesis on personal recovery in mental illness has been undertaken.
To synthesise published descriptions and models of personal recovery into an empirically based conceptual framework.
Systematic review and modified narrative synthesis.
Out of 5208 papers that were identified and 366 that were reviewed, a total of 97 papers were included in this review. The emergent conceptual framework consists of: (a) 13 characteristics of the recovery journey; (b) five recovery processes comprising: connectedness; hope and optimism about the future; identity; meaning in life; and empowerment (giving the acronym CHIME); and (c) recovery stage descriptions which mapped onto the transtheoretical model of change. Studies that focused on recovery for individuals of Black and minority ethnic (BME) origin showed a greater emphasis on spirituality and stigma and also identified two additional themes: culturally specific facilitating factors and collectivist notions of recovery.
The conceptual framework is a theoretically defensible and robust synthesis of people's experiences of recovery in mental illness. This provides an empirical basis for future recovery-oriented research and practice.
Journal Article
Identifying individuals with high risk of Alzheimer’s disease using polygenic risk scores
Polygenic Risk Scores (PRS) for AD offer unique possibilities for reliable identification of individuals at high and low risk of AD. However, there is little agreement in the field as to what approach should be used for genetic risk score calculations, how to model the effect of
APOE
, what the optimal
p-
value threshold (pT) for SNP selection is and how to compare scores between studies and methods. We show that the best prediction accuracy is achieved with a model with two predictors (
APOE
and PRS excluding
APOE
region) with pT<0.1 for SNP selection. Prediction accuracy in a sample across different PRS approaches is similar, but individuals’ scores and their associated ranking differ. We show that standardising PRS against the population mean, as opposed to the sample mean, makes the individuals’ scores comparable between studies. Our work highlights the best strategies for polygenic profiling when assessing individuals for AD risk.
While polygenic risk scores have been shown to be correlated with disease risk, there is little agreement on how the score should be calculated. Here the authors investigate risk scores for Alzheimer’s disease, finding that the most effective approach includes an APOE score and a polygenic score excluding APOE.
Journal Article
The microbiome stabilizes circadian rhythms in the gut
The gut microbiome is well known to impact host physiology and health. Given widespread control of physiology by circadian clocks, we asked how the microbiome interacts with circadian rhythms in the Drosophila gut. The microbiome did not cycle in flies fed ad libitum, and timed feeding (TF) drove limited cycling only in clockless per01
flies. However, TF and loss of the microbiome influenced the composition of the gut cycling transcriptome, independently and together. Moreover, both interventions increased the amplitude of rhythmic gene expression, with effects of TF at least partly due to changes in histone acetylation. Contrary to expectations, timed feeding rendered animals more sensitive to stress. Analysis of microbiome function in circadian physiology revealed that germ-free flies reset more rapidly with shifts in the light:dark cycle. We propose that the microbiome stabilizes cycling in the host gut to prevent rapid fluctuations with changing environmental conditions.
Journal Article
Barriers and facilitators of clinician and researcher collaborations: a qualitative study
Background
The poor translation of research findings into routine clinical practice is common in all areas of healthcare. Having a better understanding of how researchers and clinicians experience engagement in and with research, their working relationships and expectations of each other, may be one way to help to facilitate collaborative partnerships and therefore increase successful translation of research into clinical practice.
Aims
To explore the views of clinical and research staff about their experiences of working together during research projects and identify the facilitators and barriers.
Methods
We conducted four focus groups with 18 participants - clinicians, researchers and those with a dual clinical-research role, recruited from one mental health Trust and one university. Data was analysed using thematic analysis.
Results
Eight themes were identified under the headings of two research questions 1) Barriers and facilitators of either engaging in or with research from the perspective of clinical staff
,
with themes of understanding the benefits of the research; perceived knowledge and personal qualities of researchers; lack of time and organisational support to be involved in and implement research; and lack of feedback about progress and outcome of research. 2) Barriers and facilitators for engaging with clinicians when conducting research, from the perspective of researchers, with themes of understanding what clinicians need to know and how they need to feel to engage with research; demonstrating an understanding of the clinician’s world; navigating through the clinical world; and demands of the researcher role.
Conclusion
There was agreement between clinicians and researchers about the barriers and facilitators for engaging clinicians in research. Both groups identified that it was the researcher’s responsibility to form and maintain good working relationships. Better support for researchers in their role calls for training in communication skills and bespoke training to understand the local context in which research is taking place.
Journal Article
Implementation, Adoption, and Perceptions of Telemental Health During the COVID-19 Pandemic: Systematic Review
Early in 2020, mental health services had to rapidly shift from face-to-face models of care to delivering the majority of treatments remotely (by video or phone call or occasionally messaging) due to the COVID-19 pandemic. This resulted in several challenges for staff and patients, but also in benefits such as convenience or increased access for people with impaired mobility or in rural areas. There is a need to understand the extent and impacts of telemental health implementation, and barriers and facilitators to its effective and acceptable use. This is relevant both to future emergency adoption of telemental health and to debates on its future use in routine mental health care.
To investigate the adoption and impacts of telemental health approaches during the COVID-19 pandemic, and facilitators and barriers to optimal implementation.
Four databases (PubMed, PsycINFO, CINAHL, and Web of Science) were searched for primary research relating to remote working, mental health care, and the COVID-19 pandemic. Preprint servers were also searched. Results of studies were synthesized using framework synthesis.
A total of 77 papers met our inclusion criteria. In most studies, the majority of contacts could be transferred to a remote form during the pandemic, and good acceptability to service users and clinicians tended to be reported, at least where the alternative to remote contacts was interrupting care. However, a range of impediments to dealing optimal care by this means were also identified.
Implementation of telemental health allowed some continuing support to the majority of service users during the COVID-19 pandemic and has value in an emergency situation. However, not all service users can be reached by this means, and better evidence is now needed on long-term impacts on therapeutic relationships and quality of care, and on impacts on groups at risk of digital exclusion and how to mitigate these.
PROSPERO International prospective register of systematic reviews CRD42021211025; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42021211025.
Journal Article