Typing myalgic encephalomyelitis by infection at onset: A DecodeME study.

Background: People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) experience core symptoms of post-exertional malaise, unrefreshing sleep, and cognitive impairment. Despite numbering 0.2-0.4% of the population, no laboratory test is available for their diagnosis, no effective therapy exists for their treatment, and no scientific breakthrough regarding pathogenesis has been made. It remains unknown, despite decades of small-scale studies, whether individuals experience different types of ME/CFS separated by onset-type, sex or age. Methods: DecodeME is a large population-based study of ME/CFS that recruited 17,074 participants in the first 3 months following full launch. Detailed questionnaire responses from UK-based participants who all reported being diagnosed with ME/CFS by a health professional provided an unparalleled opportunity to investigate, using logistic regression, whether ME/CFS severity or onset type is significantly associated with sex, age, illness duration, comorbid conditions or symptoms. Results: The well-established sex-bias among ME/CFS patients is evident in the initial DecodeME cohort: 83.5% of participants were females. What was not known previously was that females tend to have more comorbidities than males. Moreover, being female, being older and being over 10 years from ME/CFS onset are significantly associated with greater severity. Five different ME/CFS onset types were examined in the self-reported data: those with ME/CFS onset (i) after glandular fever (infectious mononucleosis); (ii) after COVID-19 infection; (iii) after other infections; (iv) without an infection at onset; and, (v) where the occurrence of an infection at or preceding onset is not known. Among other findings, ME/CFS onset with unknown infection status was significantly associated with active fibromyalgia. Conclusions: DecodeME participants differ in symptoms, comorbid conditions and/or illness severity when stratified by their sex-at-birth and/or infection around the time of ME/CFS onset.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) is a chronic disease that affects an estimated 250,000 people in the UK. Its defining symptom is post-exertional malaise, an excessive delayed worsening of symptoms following even minor physical or mental exertion. For those with it, ME/CFS means disability and poor quality of life. DecodeME is a research study which is looking for DNA differences between people with ME/CFS and people without any health problems. People with ME/CFS who take part in DecodeME complete a questionnaire that assesses their symptoms and whether they will then be invited to donate a DNA sample. This paper analyses the answers to this questionnaire; we will publish results of the DNA analysis separately. So far, more than 17 thousand people with ME/CFS have completed the DecodeME questionnaire. Their answers help us to address the question: "Are there different types of ME/CFS linked to different causes and how severe it becomes?" Results show that people with ME/CFS do not form a single group reporting similar symptoms and additional medical conditions. Instead, participants who had an infection at the start of their ME/CFS reported a different pattern of symptoms and conditions compared to those without an infection. It is well known that most people with ME/CFS are females. What was not clear previously was that females tend to have more additional health conditions. Also, being female, being older and being over 10 years from ME/CFS onset all make it more likely that someone is more severely affected by their ME/CFS. These findings could indicate that by studying people with different ME/CFS onset-types separately ­ rather than analysing all people with ME/CFS together ­ it will be easier to understand what is going wrong.

A systematic review of contemporary competency-based education and training for pharmacy practitioners and students.

BACKGROUND: The use of competency-based education (CBE) worldwide is increasing and has been advocated for by key reports in health professional education. Recent developments, including the first global competency framework for pharmacists published by the International Pharmaceutical Federation (FIP) in 2012, can help facilitate CBE adoption. However, adopting CBE is complex and involves various features and stages of development. OBJECTIVE: This systematic review examines pharmacy education and training to identify features of CBE-related approaches currently in use worldwide to develop a picture of contemporary CBE-related activity in pharmacy for the purpose of guiding future development. METHOD: Scopus, Web of Science, Medline, Embase, and ERIC electronic databases were searched to identify relevant literature. Studies associated with CBE or training of pharmacy practitioners and related postgraduate or undergraduate students were included. Studies were limited to those published in English from 2010 to 2021. Two authors performed the screening and selection of studies, and a 3rd author resolved any discrepancies. The review followed PRSIMA guidelines and was registered with PROSPERO under CRD42022296424. The findings were analysed using an inductive approach and presented descriptively. RESULTS: Twenty-eight studies were included in the review, all of which originate from high-income countries, spanning a range of educational levels and research designs. A total of 20 features and 21 supporting components were identified and categorised, connected to those previously identified in the closely linked medical literature, and categorised into 6 overarching themes: design, teaching and learning, feedback and assessment, faculty, resources, and internal and external factors. A collective understanding of the concept of competency, in combination with a shared vision between education, regulation, and practice, underpins successful application of the CBE approach. CONCLUSIONS: This review summarises common features of CBE across the globe which can be used to guide further developments in pharmacy education. Mutual consensus on the design and delivery of CBE features ensures that the intended learning outcomes are in alignment with the learner's experience and congruent with the realities of pharmacy practice.

DecodeME: community recruitment for a large genetics study of myalgic encephalomyelitis / chronic fatigue syndrome.

BACKGROUND: Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) is a common, long-term condition characterised by post-exertional malaise, often with fatigue that is not significantly relieved by rest. ME/CFS has no confirmed diagnostic test or effective treatment and we lack knowledge of its causes. Identification of genes and cellular processes whose disruption adds to ME/CFS risk is a necessary first step towards development of effective therapy. METHODS: Here we describe DecodeME, an ongoing study co-produced by people with lived experience of ME/CFS and scientists. Together we designed the study and obtained funding and are now recruiting up to 25,000 people in the UK with a clinical diagnosis of ME/CFS. Those eligible for the study are at least 16 years old, pass international study criteria, and lack any alternative diagnoses that can result in chronic fatigue. These will include 5,000 people whose ME/CFS diagnosis was a consequence of SARS-CoV-2 infection. Questionnaires are completed online or on paper. Participants' saliva DNA samples are acquired by post, which improves participation by more severely-affected individuals. Digital marketing and social media approaches resulted in 29,000 people with ME/CFS in the UK pre-registering their interest in participating. We will perform a genome-wide association study, comparing participants' genotypes with those from UK Biobank as controls. This should generate hypotheses regarding the genes, mechanisms and cell types contributing to ME/CFS disease aetiology. DISCUSSION: The DecodeME study has been reviewed and given a favourable opinion by the North West - Liverpool Central Research Ethics Committee (21/NW/0169). Relevant documents will be available online ( www.decodeme.org.uk ). Genetic data will be disseminated as associated variants and genomic intervals, and as summary statistics. Results will be reported on the DecodeME website and via open access publications.

Education for just transitions: Lifelong learning and the 30th anniversary Human Development Report.

The 30th anniversary Human Development Report, entitled The Next Frontier: Human Development and the Anthropocene, was released by the United Nations Development Programme in December 2020. It marks an important step forward as a high-profile publication trying to radically re-think the challenge of sustainable development and revisit what it means to develop as human beings interconnected within earth systems. This article provides a critical reading of the report, and human development literature more widely, in assessing the role of lifelong learning in educating for just transitions, which it broadly understands as the transformation of all social systems, including economic systems, to bring them back into balance with earth systems in which they are embedded. The report maintains its trademark "human development lens" which has characterised the series since their inception in 1990. It prioritises consideration of capabilities, agency and values as central to the challenge, and opens up a discussion of how we need to change our understandings, values and actions, including what it means to be human, in order to effect just transitions towards sustainability. However, as the authors demonstrate, the report falls short of considering the lifelong learning challenge inherent and central to just transitions. The authors argue that the pressing challenge of responding to the climate emergency requires a richer understanding of how humans learn throughout their life course. In so doing, this article is a contribution to both the literature on education and human development, and the growing body of literature in the field of adult education and sustainability.

L'éducation pour des transitions justes : l'apprentissage tout au long de la vie et l'édition qui marque le 30e anniversaire du Rapport sur le développement ­ L'édition du Rapport sur le développement, parue à l'occasion de son 30e anniversaire et intitulée La prochaine frontière : le développement humain et l'Anthropocène, a été publiée par le Programme de développement des Nations Unies en décembre 2020. Publication de haut niveau, le rapport constitue une importante avancée dans la tentative de repenser radicalement le défi que pose le développement durable et de revoir ce que veut dire notre développement en tant qu'êtres humains liés entre eux au sein des systèmes de la Terre. Cet article propose une lecture critique du rapport et, plus globalement, de la littérature sur le développement humain, en évaluant le rôle de l'apprentissage tout au long de la vie dans l'éducation pour des transitions justes, qu'il envisage plus largement comme la transformation de tous les systèmes sociaux, y compris des systèmes économiques, afin de restaurer un équilibre entre eux et les systèmes de la Terre dans lesquels ils sont ancrés. Le rapport continue de passer par « le prisme du développement humain ¼, la marque de fabrique qui le caractérise depuis sa création en 1990. Il donne la priorité à la prise en compte des capacités, de l'instrumentalité et des valeurs qui sont au cœur du défi, et ouvre le débat sur la façon dont nous devons modifier nos conceptions, valeurs et actions, y compris en ce qui concerne la signification de ce qu'est être humain, pour mener à bien des transitions justes sur la voie du développement durable. Néanmoins, les auteurs démontrent que le rapport est loin de considérer que le défi de l'apprentissage tout au long de la vie est inhérent à des transitions justes et fondamental pour elles. Ils soutiennent que l'urgence de répondre au changement climatique demande une conception plus riche de la façon dont les humains apprennent tout au long de leur existence. Ce faisant, l'article contribue à enrichir la littérature sur l'éducation et le développement ainsi que celle de plus en plus abondante sur l'éducation des adultes et le développement durable.

Possibilities and priorities for IJED in times of uncertainty: A 40th anniversary analysis.

This article reflects upon the history of the Journal, its evolving nature and rationale and upon possibilities and priorities for the future in what are uncertain times for all.

Genetic risk factors of ME/CFS: a critical review.

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex multisystem illness that lacks effective therapy and a biomedical understanding of its causes. Despite a prevalence of ∼0.2-0.4% and its high public health burden, and evidence that it has a heritable component, ME/CFS has not yet benefited from the advances in technology and analytical tools that have improved our understanding of many other complex diseases. Here we critically review existing evidence that genetic factors alter ME/CFS risk before concluding that most ME/CFS candidate gene associations are not replicated by the larger CFS cohort within the UK Biobank. Multiple genome-wide association studies of this cohort also have not yielded consistently significant associations. Ahead of upcoming larger genome-wide association studies, we discuss how these could generate new lines of enquiry into the DNA variants, genes and cell types that are causally involved in ME/CFS disease.

A conceptual framework toward identifying and analyzing challenges to the advancement of pharmacy.

BACKGROUND: Pharmacists and health care professionals are faced with increasing and changing health care needs around the world. To meet these demands, they are required to continuously upgrade and develop their professions. Reprofessionalization is therefore crucial to the successful delivery of health services, but traditional theories might provide little practical guidance to evaluating the overall status of a profession. OBJECTIVE: This study proposes a new conceptual framework of three interrelated professional sectors: education, regulation and practice, and uses it to identify and analyze challenges facing the pharmacy profession in Jordan. METHODS: A multiple-method qualitative study comprised of semi-structured interviews and focus groups was conducted in Amman, Jordan. To explore and identify the challenges, a purposively recruited cross-sector sample of 53 key informants, stakeholders and pharmacists were interviewed. Interview transcripts were translated and analyzed using QSR NVivo 10. Thematic analysis identified eight main challenges facing pharmacy in Jordan. The original participants were then invited to participate in focus groups, the purpose of which was to validate the interview findings, map them against the conceptual framework and discuss recommendations for development. RESULTS: The eight validated challenges span the following areas: graduates preparedness for practice, pharmacy education accreditation and quality assurance, pre-registration requirements, workforce development, workforce planning, remuneration and wage rate, pharmacy assistants, and Pharm.D. pharmacists. Focus group participants used the framework to map each of the challenges to the primary sector-to-sector disconnect that they perceived to explain it. A list of recommendations addressing each of the challenges was also devised. CONCLUSIONS: The framework was found to offer valuable insight as an explanatory and diagnostic tool in policy-relevant research. By emphasizing the processual and contextual nature of reprofessionalization, the framework presents an alternative approach to traditional theories. This study also raises important questions regarding the status of pharmacy in Jordan and aims to provide guidance for local development and much-needed reprofessionalization drives.