patient experience

Elizabeth Hintz ABSTRACT Interactions between female patients with chronic pain and their medical providers in which providers question or contest the “realness” or nature of their illness experience (e.g. “It’s all in your head”) have been reported extensively in the extant qualitative...

Edit: Now published, see post #4 in this thread. Abstract Background: Stigma can be experienced as perceived or actual disqualification from social and institutional acceptance on the basis of one or more physical, behavioural or other attributes deemed to be undesirable. Long Covid is a...

(Paywalled) https://www.thetimes.co.uk/article/endometriosis-i-was-in-pain-for-years-why-did-no-one-help-gt0wtltcq

New online course on Medbridge: Lessons From Myalgic Encephalomyelitis for Long COVID presented by Todd Davenport, PT, DPT, MPH, OCS https://www.medbridgeeducation.com/course-catalog/details/lessons-from-myalgic-encephalomyelitis-for-long-covid-todd-davenport/

A new website was launched today in Norway; LP-fortellinger (LP-stories). For now it has 32 stories about ME patients' negative experiences with Lightning Process. It also has some information about ME, LP, Recovery Norge and a collection of resources. The people behind the website are...

Abstract Objective: To explore the lived experience of ‘brain fog’—the wide variety of neurocognitive symptoms that can follow COVID-19. Design and setting: A UK-wide longitudinal qualitative study comprising online focus groups with email follow-up. Method: 50 participants were recruited from...

Highlights • Functional seizures remains a complex neuropsychiatric condition to identify and treat. • Practitioners must address management of physical symptoms and underlying causes. • Management strategies can fail if their reasoning is not properly communicated. • Better outcomes may result...

Abstract Background: Long COVID, an illness affecting a subset of individuals after COVID-19, is distressing and poorly understood. Exploring the experiences of people with long COVID could help inform current conceptualizations of the illness, guide supportive care strategies, and validate...

Abstract Long-Covid (LC), as a patient-defined illness, has rapidly emerged as both a medical and social issue since 2020, drawing headlines in the public and global domain. In the UK, people experiencing ongoing symptoms of Covid after the initial infection came together online to try to make...

https://www.express.co.uk/life-style/health/1535717/chronic-fatigue-syndrome-symptoms-feeling-tired-all-the-time If only the NHS website had some decent info on it:banghead:

https://anchor.fm/silent-elephant-project/episodes/33--Getting-To-Know-ME---Chapter-17-Hopes--Dreams-e1bdtus

Long Covid/Post-Acute-Covid Syndrome as a‘hybrid condition’-A common framework for patients’ experience and pathophysiology AUTHORS Dirk RichterAnastasia Theodoridou Pre-print, accessed December 2021 Abstract While hundreds of thousands of patients suffer from Long Covid/Post-Acute...

ABSTRACT Introduction: Research regarding students with myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) has been limited. This study aimed to understand how their subjective well-being had been affected by their condition by exploring their experiences and sense-making processes...

This thread has been moved from the News subforum and renamed following a published paper based on Cheston's work. Respect and Shame in Healthcare and Bioethics Workshop: Peter Schaber, University of Zurich – “Respect for the Patient’s Wishes.” + ECR presentation from Katharine Cheston...

‘Reimagining a self’: an evocative autoethnography of living alongside Myalgic Encephalomyelitis(ME) Orlagh Farrell Delaney RGN, MA A thesis submitted to Maynooth University in fulfilment of the requirements for the degree of Doctor of Philosophy in the Faculty of Social Sciences Department...

SAGE Open Nursing "Can Someone as Young as You Really Feel That Much Pain?" - A Survey on How People With Fibromyalgia Experience Healthcare in Sweden - Hasselroth et al - 2021 Research show that fibromyalgia has low credibility in healthcare, leading to poor treatment, lack of knowledge and...

Full title: The impact of Post-COVID-Syndrome on functioning – results from a community survey in patients after mild and moderate SARS-CoV-2-infections in Germany Abstract Background In COVID-19 survivors a relatively high number of long-term symptoms have been observed. Besides impact on...

This thread contains excerpts from and links to all of Veronica's published poems. Veronica Ashenhurst, a friend of mine who is a Canadian lawyer and now severely affected, wrote this poem about medical misogyny based on her experiences and beyond. It has just been published in the poetry...

2 of their interviewees have/had CFS...

https://blogs.bmj.com/bmj/2021/09/20/to-speed-progress-in-treating-chronic-conditions-engage-patients-and-caregivers-as-research-partners/