ME Association

Abstract Purpose To co-produce the Clinical Needs Assessment for Myalgic Encephalomyelitis (CNAME) with patients and clinicians, and to assess its content validity. Methods Guided by the COSMIN guidelines, a draft CNAME was devised from relevant literature and lived experience. It was revised following piloting and cognitive interviews with the advisory groups and then completed online by people with ME. Content and face validity were assessed via deductive framework analysis of participants’ feedback. Construct validity (in terms of relevance, duplication and comprehensibility) were assessed using frequencies, cross-tabulations and response rates respectively. As the CNAME produces dichotomous (yes/no/not relevant) data which are not summated and is not intended for repeated use further psychometric analyses are not possible or relevant. Results Four hundred people with ME participated. Comprehensibility was excellent (>97.5% item completion rate). There were no floor effects, but several items had a ceiling effect and were removed. Eight items demonstrated duplication and were combined. Participant feedback was positive, confirming that the CNAME addressed the issues that were important and relevant to them and was easy to complete. Conclusions The Clinical Needs Assessment for ME is a valid, feasible and acceptable measure of people with ME/CFS’ clinical needs.

<bold>Background:</bold> Newer positional therapy (PT) devices provide vibrotactile feedback to patients with positional obstructive sleep apnoea (POSA). There is scarce data on their effect on longer-term effects on sleep apnoea severity and symptoms. <bold>Methods:</bold> A randomised, parallel, double-blinded trial compared PT with sham over 3 months. Adults with POSA were randomised to either neck-worn vibrotactile PT (Night Shift™; Advanced Brain Monitoring, USA) or identical sham device. The primary endpoint was the apnoea hypopnoea index (AHI) at 3 months. Secondary analyses included the Epworth Sleepiness Scale score (ESS) and the Pittsburgh Sleep Quality Index (PSQI). <bold>Results:</bold> 120 patients were randomised. Patients had a mean±SD age of 52.7±12.3 years, mean BMI of 28.4±4.2 kg/m2, median AHI of 12.8 /hr (IQR 9.2, 18.5), mean ESS of 8.8±4.7, 94 (78%) were male, and 92 (77%) completed the trial. There was a significant improvement in the AHI of 4.4 /hr (95% CI 1.1, 7.8; p= 0.01, <bold><italic>Figure</italic></bold>) with PT compared with sham. There was a significant improvement in the PSQI of 1.0 (95%CI 0.0, 2.1; p=0.04), but not the ESS (0.6, 95%CI -0.6, 1.8; p=0.3) with PT compared to sham. <bold><italic>Figure: AHI at baseline and after 3-months of PT and Sham PT</italic></bold> <fig><object-id>erj;64/suppl_68/PA863/F1</object-id><object-id>F1</object-id><object-id>F1</object-id><graphic></graphic></fig> <bold>Conclusion</bold>: PT reduced the severity of OSA and improved sleep quality but not sleepiness. Patients were minimally symptomatic and further research is needed in those with excessive sleepiness.

ObjectivesTo identify, synthesise and appraise evidence relating to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and pregnancy.DesignMixed-methods systematic review, using convergent segregated design.Data sourcesMEDLINE, EMBASE, Scopus, PsycINFO, CINAHL, MedRxiv, PROSPERO and grey literature sources through 6 August 2023.Eligibility criteriaWe included original research studies, expert opinion and grey literature reporting on ME/CFS and pregnancy/post partum (up to 2 years), risk of pregnancy outcomes with ME/CFS or experiences during pregnancy for mother, partner or health and social care professionals following ME/CFS during pregnancy, all where the evidence was relevant to a confirmed ME/CFS diagnosis prior to pregnancy.Data extraction and synthesisThree independent reviewers completed all screening, data extraction and quality assessment. Risk of bias was assessed using the mixed-methods appraisal tool V.2018. Qualitative and quantitative literature was analysed separately using thematic and descriptive syntheses. Findings were integrated through configuration.ResultsSearches identified 3675 articles, 16 met the inclusion criteria: 4 quantitative (1 grey), 11 qualitative (9 grey) and 1 grey mixed-methods study. Of the four quantitative studies that reported on ME/CFS severity during pregnancy, two suggested pregnancy negatively impacted on ME/CFS, one found most women had no change in ME/CFS symptoms and one found ME/CFS improved; this difference in symptom severity across studies was supported by the qualitative evidence. The qualitative literature also highlighted the importance of individualised care throughout pregnancy and birth, and the need for additional support during family planning, pregnancy and with childcare. Only one quantitative study reported on pregnancy outcomes, finding decreased vaginal births and higher rates of spontaneous abortions and developmental and learning delays associated with pregnancies in those with ME/CFS.ConclusionsCurrent evidence on ME/CFS in pregnancy is limited and findings inconclusive. More high-quality research is urgently needed to support the development of evidence-based guidelines on ME/CFS and pregnancy.

The endocrine system coordinates almost all organs and other systems in vertebrates. In particular, it regulates such important biological functions as metabolism, development, reproduction, and behaviour. To date, a significant amount of information has accumulated on endocrine disorders associated with chemical compounds (endocrine disruptors) used in various fields of human activity. The aim of this study was to evaluate the possibility of preclinical risk assessment for the endocrine function disorders attributable to new medicinal products. Endocrine disruptors are associated with a wide range of adverse events, including developmental problems arising from functional abnormalities of the endocrine system. Endocrine disorders caused by endocrine-disrupting chemicals are characterised by a long latency period between exposure and manifestation of a dysfunction; a nonlinear dose–response relationship; and a linear correlation of damage severity to exposure timing and duration. The chemicals influence the endocrine system through multiple mechanisms, the main of which being the interaction with cellular receptors sensitive to certain hormones and the influence on gene expression, intracellular signalling, and hormone transport, etc. This paper discusses the possibility of using hormone levels as indicators of endocrine disruption and presents the literature and authors’ own data on normal levels of relevant hormones in the blood of animals. An analysis of animal blood hormone levels in preclinical programmes will provide an opportunity to evaluate potential iatrogenic risks.

Village Housing'Anyone wondering how rural England became "a retirement retreat or playground for the wealthy" should read this stimulating book, which offers a deeper analysis of England's rural housing crisis, combining theory and case studies to investigate the role of property, taxation, financialisation, planning and housebuilders in creating our exclusive countryside.'-Mark Shucksmith, Newcastle University 'Village Housing powerfully sets out the history of the housing crisis in rural England, which in too many places has become a playground for the wealthy.By offering practical ideas through case studies, this insightful book looks at how we can widen access to affordable housing in the countryside and at the multiple benefits that would bring.' -Kate Henderson, Chief Executive, National Housing Federation 'A fascinating read that superbly frames current opportunities and challenges affecting village housing projects.The book draws out the role that village housing developments have played in supporting and reacting to the changing economic and demographic needs of the countryside, including the connectivity with urban and industrial shifts.It appraises the critical role of public policy, specifically planning policy, and how this has been used as an enabling and disenabling factor, reflecting public attitudes and perceptions of what form villages should take.

The fall of 2022 approaches with the need to finalize our plans for next year. This is urgent for the 2023 Meeting of the Padua Days of Muscle and Mobility Medicine, (PDM3) to be held March 29 to April 1, 2023 at the Hotel Petrarca in the Thermae of Euganean Hills (Padua), Italy, but there are also news related to the inclusion of the European Journal of Translational Myology (EJTM) in the Web of Science: Emerging Sources Citation Index – Clarivate (ESCI) database. A preliminary PDM3 flyer is almost ready with session program, organzers and keynote speakers. Some are the traditional organizers of the PDM3 sessions dedicated to molecular and cellular myology, but there will also be interesting new entries, including those of Rehabilitation Sessions. No doubt that PDM3 2023 will be a great gift for all Participants, as is the tradition of PDM3. The other big news scheduled for June 2023 is the Impact Factor 2022 that Clarivate will release next year. It could be a big or small gift. As Authors who publish in other Magazines, but even more as Referees we could contribute in the next months of 2022 to make a small gift from Clarivate bigger. In any case, it will be a great gift that has been awaited for many years for one of us, who is approaching 80 years of age next February 2023.

Background Many people prefer to die at home when the time comes. Hospice at home services aim to support patients to achieve this. A range of hospice at home services exist; some services have been evaluated, but there has been limited evidence synthesis. Objectives The main objective was to find out what models of hospice at home services work best, for whom and in what circumstances. Other objectives supported this aim, including an analysis of the health economic costs of hospice at home models. Design The study was an overarching, non-interventional, realist evaluation comprising three phases. Phase 1 was a survey of hospice at home services. Phase 2 involved 12 case studies, grouped into four models on the basis of size and 24 hours per day, 7 days per week (24/7), operations, from which quantitative and health economics data were gathered. Qualitative interview data from bereaved carers, commissioners and providers were analysed to generate context–mechanism–outcome configurations. Phase 3 comprised stakeholder consensus meetings. Setting Hospice at home services across England. Participants A total of 70 hospice at home managers responded to the survey. A total of 339 patient and family/informal carer dyads were recruited; 85 hospice at home providers and commissioners were interviewed. A total of 88 stakeholders participated in consensus meetings. Main outcome measures The quality of dying and death of patients was assessed by bereaved carers (using the Quality of Dying and Death questionnaire). A patient’s use of services was collected using the Ambulatory and Home Care Record. Results Hospice at home services varied; two-thirds were mainly charitably funded, and not all operated 24/7. Most patients (77%) had cancer. Hospice at home services overall provided care that was likely to deliver ‘a good death’, and 73% of patients died in their preferred place. Six context–mechanism–outcome configurations captured factors relevant to providing optimum hospice at home services: (1) sustainability (of the hospice at home service); (2) volunteers (use of, in the hospice at home service); (3) integration and co-ordination (with the wider health and social care system); (4) marketing and referral (of the hospice at home service); (5) knowledge, skills and ethos (of hospice at home staff); and (6) support directed at the carer at home. Key markers of a good service included staff who had time to care, providing hands-on care; staff whose knowledge and behaviour promoted supportive relationships and confidence through the process of dying; and services attending to the needs of the informal carer. Areas of potential improvement for most hospice at home services were the use of volunteers in hospice at home, and bereavement care. Limitations The study had the following limitations – heterogeneity of hospice at home services, variations in numbers and patient clinical statuses at recruitment, a low Quality of Dying and Death questionnaire response rate, and missing data. Only patients with an informal carer involved on a daily basis were eligible for the study. Conclusions Hospice at home services delivered high-quality care and a ‘good death’, with the majority of patients dying in their stated preferred place. Hospice at home providers can improve their impact by focusing on the features identified that deliver the best patient outcomes. Commissioners can facilitate patient preference and reduce the number of hospital deaths by working with hospice at home services to secure their financial sustainability and increase the numbers and range of patients admitted to hospice at home services. Future research Future research should explore the use of volunteers in the hospice at home setting and evaluate approaches to bereavement support. Funding This project was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme and will be published in full in Health and Social Care Delivery Research; Vol. 10, No. 24. See the NIHR Journals Library website for further project information.

Introduction. This study aimed to reveal the disease burden of aphasia after acute ischemic stroke (AIS) at the national level and investigate the impact of aphasia on tertiary care resources and patient outcomes. We aimed to investigate the length of stay (LOS) and discharge modified Rankin Scale (mRS) score in aphasic, acute ischemic stroke (AIS) patients in order to estimate aphasia-related disease burden at a national level. Material and method. The local database from the Cluj-Napoca Emergency County Hospital (CNECH), the second largest stroke center in Romania was used to export demographics, baseline clinical and laboratory data, inpatient length of stay (LOS), NIH Stroke Scale (NIHSS), and discharge modified Rankin Scale (mRS) score data for all AIS patients admitted during March 2019. Results and discussions. Of 92 patients included in the study, 30 (32.6 %) had aphasia on admission. In a marginally significant unadjusted hierarchical multiple regression model, individuals with aphasia had a LOS of 1.86 days longer than stroke survivors without aphasia. In an adjusted version of the model, the NIHSS score at baseline was a significant predictor for LOS. In addition, the presence of aphasia was associated with a 1.49 increase in the mean mRS score. Aphasia was a marginally significant predictor for increased LOS. Presence of aphasia was more likely to produce a poor functional outcome. Conclusions. Considering an estimated impact of approximately EUR 3 million on direct medical expenditure annually, future policymaking efforts should improve prevention of stroke and improved access to post-stroke aphasia care in Romania. Keywords: aphasia; acute ischemic stroke; length of stay; disability, outcome,

Persons with lived and living experiences of homelessness (PWLEs) commonly use hospitals and emergency departments to access healthcare yet support for transitions from hospital to shelter/housing can be challenging to access. To improve the continuity of care and health outcomes for PWLEs who are being discharged from hospital, a more complete understanding of two hospital-to-shelter/housing programs in Metro Vancouver, Canada was sought. Using a community-based participatory research approach, we conducted in-depth interviews in-person or by phone. Participants included eight healthcare and shelter/housing decision-makers and providers and a convenience sample of ten program participants (two females and eight males who ranged in age from 31 to 74 years old; average = 50 years old). Data were analyzed in NVivo 12 to identify successes including: 1) achieving health stability and recovery following hospital discharge; 2) having privacy and freedom while in the program; 3) building relationships with providers; 4) having formal support to find housing; and 5) cross-sector relationships between providers. Challenges included: 1) limited availability of affordable and appropriate housing; 2) other guests’ ways of life; 3) complex needs versus limited after-care resources; and 4) inequities in program access. While hospital-to-shelter/housing programs can serve as intervention opportunities to connect PWLEs to permanent housing, discharge plans need to acknowledge the local limitations on housing availability and offer short-term options for patients who require sub-acute rest and convalescence.