Acquiring a new understanding of illness and agency: a narrative study of recovering from chronic fatigue syndrome

This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.Background: The condition known as chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) is poorly understood. Simplified medical models tend to neglect the complexity of illness, contributing to a terrain of uncertainty, dilemmas and predicaments. However, despite pessimistic pictures of no cure and poor prognosis, some patients recover. Purpose: This study’s purpose is to provide insight into people’s experiences of suffering and recovery from very severe CFS/ME and illuminate understanding of how and why changes became possible. Methods: Fourteen former patients were interviewed about their experiences of returning to health. A narrative analysis was undertaken to explore participants’ experiences and understandings. We present the result through one participant’s story. Results: The analysis yielded a common plotline with a distinct turning point. Participants went through a profound narrative shift, change in mindset and subsequent long-time work to actively pursue their own healing. Their narrative understandings of being helpless victims of disease were replaced by a more complex view of causality and illness and a new sense of self-agency developed. Discussion: We discuss the illness narratives in relation to the disease model and its shortcomings, the different voices dominating the stories at different times in a clinically, conceptually, and emotionally challenging area.publishedVersio

Vann, juss og samfunn

Society’s use and management of water relies on professional expertise spanning diverse fields: from biology and technology to economics and law. This book examines current issues related to regulating water through chapters summarizing various sets of regulation as well as chapters that take a scientific deep dive into selected themes. The diversity of professional expertise is also reflected in the law aspect. We explore such subjects as surface runoff, natural disasters, drinking water, groundwater, salmon, hydropower, and human rights, as well as general impact assessment requirements and duty of knowledge in environmental law administration. A key objective of the book has been to provide an interdisciplinary understanding of the legal circumstances associated with water, and in addition, deliberate the pros and cons of some of the current regulations. This book will be particularly useful for those who in various ways support and facilitate procedures within the public sector at both the national and municipal levels. It will also be useful for private sector actors seeking familiarity with legal questions that can arise in relation to public administration and other private actors. From a broader perspective, we hope the book can help to throw light on conflicts between different interests and groups within society that occur, for example, when introducing fees, special injunctions against private actors, and requirements for knowledge basis. This book project is the result of legal research conducted at the Norwegian University of Life Sciences (NMBU) and is supplemented by national expertise in several areas. It has been edited by Steinar Taubøll, a professor at NMBU’s Department of Property and Law. Taubøll has a background in both law and the natural sciences, and extensive experience with interdisciplinary work.Håndtering og bruk av vann i samfunnet krever et faglig mangfold fra biologi og teknikk til økonomi og juss. Denne boken drøfter aktuelle temaer knyttet til rettslig regulering av vann, både i form av oversiktskapitler om ulike regelsett og gjennom vitenskapelige dypdykk i utvalgte temaer. Den faglige spennvidden gjenspeiler seg også innen det juridiske. I boken finner man stoff om overvannshåndtering, naturfare, drikkevann, grunnvann, villaks, kraftutbygging, menneskerettigheter, samt om generelle utredningskrav og kunnskapsplikter i miljørettsforvaltning. Et sentralt siktemål er å bygge opp tverrfaglig forståelse av gjeldende juridiske forhold knyttet til vann, og dessuten sette noen av dagens reguleringer under debatt. Boken retter seg særlig til de ressurspersonene som på ulike måter støtter saksbehandlingen i stat og kommune. Boken antas også å være nyttig for private aktører som vil gjøre seg mer kjent med rettsspørsmål som kan oppstå i forhold til forvaltningen og til andre private aktører. I et bredere perspektiv er det dessuten ønskelig at boken kan bidra til å belyse konflikter mellom ulike hensyn og grupper i samfunnet, for eksempel ved innføring av gebyrer, pålegg rettet mot private, innføring av tyngende vilkår og krav til kunnskap og faktagrunnlag. Bokprosjektet springer ut av den juridiske forskningen ved Norges miljø- og biovitenskapelige universitet, og har i tillegg knyttet til seg nasjonal spisskompetanse på mange temaer. Bokas redaktør er dosent Steinar Taubøll ved Institutt for eiendom og juss ved NMBU, som har naturfaglig og juridisk utdannelse, samt lang erfaring med tverrfaglig arbeid

Vann, juss og samfunn

Society’s use and management of water relies on professional expertise spanning diverse fields: from biology and technology to economics and law. This book examines current issues related to regulating water through chapters summarizing various sets of regulation as well as chapters that take a scientific deep dive into selected themes. The diversity of professional expertise is also reflected in the law aspect. We explore such subjects as surface runoff, natural disasters, drinking water, groundwater, salmon, hydropower, and human rights, as well as general impact assessment requirements and duty of knowledge in environmental law administration. A key objective of the book has been to provide an interdisciplinary understanding of the legal circumstances associated with water, and in addition, deliberate the pros and cons of some of the current regulations. This book will be particularly useful for those who in various ways support and facilitate procedures within the public sector at both the national and municipal levels. It will also be useful for private sector actors seeking familiarity with legal questions that can arise in relation to public administration and other private actors. From a broader perspective, we hope the book can help to throw light on conflicts between different interests and groups within society that occur, for example, when introducing fees, special injunctions against private actors, and requirements for knowledge basis. This book project is the result of legal research conducted at the Norwegian University of Life Sciences (NMBU) and is supplemented by national expertise in several areas. It has been edited by Steinar Taubøll, a professor at NMBU’s Department of Property and Law. Taubøll has a background in both law and the natural sciences, and extensive experience with interdisciplinary work

Chronic fatigue syndromes: real illnesses that people can recover from

The ‘Oslo Chronic Fatigue Consortium’ consists of researchers and clinicians who question the current narrative that chronic fatigue syndromes, including post-covid conditions, are incurable diseases. Instead, we propose an alternative view, based on research, which offers more hope to patients. Whilst we regard the symptoms of these conditions as real, we propose that they are more likely to reflect the brain's response to a range of biological, psychological, and social factors, rather than a specific disease process. Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains. We further propose that the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided. We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation. Instead, we propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities. Finally, we call for a much more open and constructive dialogue about these conditions. This dialogue should include a wider range of views, including those of patients who have recovered from them

Incidence of severe critical events in paediatric anaesthesia (APRICOT): a prospective multicentre observational study in 261 hospitals in Europe

Background Little is known about the incidence of severe critical events in children undergoing general anaesthesia in Europe. We aimed to identify the incidence, nature, and outcome of severe critical events in children undergoing anaesthesia, and the associated potential risk factors. Methods The APRICOT study was a prospective observational multicentre cohort study of children from birth to 15 years of age undergoing elective or urgent anaesthesia for diagnostic or surgical procedures. Children were eligible for inclusion during a 2-week period determined prospectively by each centre. There were 261 participating centres across 33 European countries. The primary endpoint was the occurence of perioperative severe critical events requiring immediate intervention. A severe critical event was defined as the occurrence of respiratory, cardiac, allergic, or neurological complications requiring immediate intervention and that led (or could have led) to major disability or death. This study is registered with ClinicalTrials.gov, number NCT01878760. Findings Between April 1, 2014, and Jan 31, 2015, 31â127 anaesthetic procedures in 30â874 children with a mean age of 6·35 years (SD 4·50) were included. The incidence of perioperative severe critical events was 5·2% (95% CI 5·0â5·5) with an incidence of respiratory critical events of 3·1% (2·9â3·3). Cardiovascular instability occurred in 1·9% (1·7â2·1), with an immediate poor outcome in 5·4% (3·7â7·5) of these cases. The all-cause 30-day in-hospital mortality rate was 10 in 10â000. This was independent of type of anaesthesia. Age (relative risk 0·88, 95% CI 0·86â0·90; p<0·0001), medical history, and physical condition (1·60, 1·40â1·82; p<0·0001) were the major risk factors for a serious critical event. Multivariate analysis revealed evidence for the beneficial effect of years of experience of the most senior anaesthesia team member (0·99, 0·981â0·997; p<0·0048 for respiratory critical events, and 0·98, 0·97â0·99; p=0·0039 for cardiovascular critical events), rather than the type of health institution or providers. Interpretation This study highlights a relatively high rate of severe critical events during the anaesthesia management of children for surgical or diagnostic procedures in Europe, and a large variability in the practice of paediatric anaesthesia. These findings are substantial enough to warrant attention from national, regional, and specialist societies to target education of anaesthesiologists and their teams and implement strategies for quality improvement in paediatric anaesthesia. Funding European Society of Anaesthesiology

Incidence of severe critical events in paediatric anaesthesia (APRICOT): a prospective multicentre observational study in 261 hospitals in Europe

Background Little is known about the incidence of severe critical events in children undergoing general anaesthesia in Europe. We aimed to identify the incidence, nature, and outcome of severe critical events in children undergoing anaesthesia, and the associated potential risk factors. Methods The APRICOT study was a prospective observational multicentre cohort study of children from birth to 15 years of age undergoing elective or urgent anaesthesia for diagnostic or surgical procedures. Children were eligible for inclusion during a 2-week period determined prospectively by each centre. There were 261 participating centres across 33 European countries. The primary endpoint was the occurence of perioperative severe critical events requiring immediate intervention. A severe critical event was defined as the occurrence of respiratory, cardiac, allergic, or neurological complications requiring immediate intervention and that led (or could have led) to major disability or death. This study is registered with ClinicalTrials.gov, number NCT01878760. Findings Between April 1, 2014, and Jan 31, 2015, 31 127 anaesthetic procedures in 30 874 children with a mean age of 6.35 years (SD 4.50) were included. The incidence of perioperative severe critical events was 5.2% (95% CI 5.0-5.5) with an incidence of respiratory critical events of 3.1% (2.9-3.3). Cardiovascular instability occurred in 1.9% (1.7-2.1), with an immediate poor outcome in 5.4% (3.7-7.5) of these cases. The all-cause 30-day in-hospital mortality rate was 10 in 10 000. This was independent of type of anaesthesia. Age (relative risk 0.88, 95% CI 0.86-0.90; p<0.0001), medical history, and physical condition (1.60, 1.40-1.82; p<0.0001) were the major risk factors for a serious critical event. Multivariate analysis revealed evidence for the beneficial effect of years of experience of the most senior anaesthesia team member (0.99, 0.981-0.997; p<0.0048 for respiratory critical events, and 0.98, 0.97-0.99; p=0.0039 for cardiovascular critical events), rather than the type of health institution or providers. Interpretation This study highlights a relatively high rate of severe critical events during the anaesthesia management of children for surgical or diagnostic procedures in Europe, and a large variability in the practice of paediatric anaesthesia. These findings are substantial enough to warrant attention from national, regional, and specialist societies to target education of anaesthesiologists and their teams and implement strategies for quality improvement in paediatric anaesthesia

ISARIC-COVID-19 dataset: A Prospective, Standardized, Global Dataset of Patients Hospitalized with COVID-19

The International Severe Acute Respiratory and Emerging Infection Consortium (ISARIC) COVID-19 dataset is one of the largest international databases of prospectively collected clinical data on people hospitalized with COVID-19. This dataset was compiled during the COVID-19 pandemic by a network of hospitals that collect data using the ISARIC-World Health Organization Clinical Characterization Protocol and data tools. The database includes data from more than 705,000 patients, collected in more than 60 countries and 1,500 centres worldwide. Patient data are available from acute hospital admissions with COVID-19 and outpatient follow-ups. The data include signs and symptoms, pre-existing comorbidities, vital signs, chronic and acute treatments, complications, dates of hospitalization and discharge, mortality, viral strains, vaccination status, and other data. Here, we present the dataset characteristics, explain its architecture and how to gain access, and provide tools to facilitate its use