patient experience

https://adc.bmj.com/content/110/Suppl_1/A152 Young People’s Health Special Interest Group 7799 Healthcare experiences of young people with CFS/ME in their own words Hector Watson1, Terry Segal2 University Hospitals of Derby and Burton NHS Foundation Trust University College London Hospitals...

OMG we did it‼️‼️ In this film for ME Awareness month, five medical doctors open up about living with PAIS/IACC conditions like ME, long-COVID, and chronic Lyme. It’s a format that I believe has never been shown before, not just in the Netherlands but possibly worldwide! They speak candidly...

Evaluation of a survey exploring the experiences of adults and children with ME/CFS who have participated in CBT and GET interventional programmes https://www.meaction.net/wp-content/uploads/2019/04/NICE-Patient-Survey-Outcomes-CBT-and-GET-Oxford-Brookes-Full-Report-03.04.19.pdf FINAL REPORT...

Abstract: This article conveys how taking patient knowledge seriously can improve patient experience and further medical science. In clinical contexts related to infection-associated chronic conditions and other complex chronic illnesses, patient knowledge is often undervalued, even when...

https://www.tandfonline.com/doi/full/10.1080/21641846.2024.2444826 Research Article Voice of the patient: people with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) share in their own words Dana J. Brimmer Jin-Mann S. Lin & Elizabeth R. Unger Received 12 Sep 2024, Accepted 23 Oct...

https://link.springer.com/article/10.1007/s12144-024-06935-0#citeas Shapiro, D., Hayburn, A. Medical gaslighting as a mechanism for medical trauma: case studies and analysis. Curr Psychol (2024). https://doi.org/10.1007/s12144-024-06935-0 Medical gaslighting as a mechanism for medical trauma...

Highlights Illness invalidation occurs for people managing a range of chronic health symptoms. Psychological distress was associated with illness invalidation from three sources. Illness invalidation from family members was most strongly associated with distress. Multimorbidity and longer...

Diagnosis: Jessica’s story As told by her parents Simon and Andrea. “Our precious daughter, Jessica, died on 20 December 2020. She was 27 years old. She had been ill for 6 months, but the spring/summer lockdown meant face-to-face consultations with her GP were restricted and numerous...

Hi. I just wanted to share an essay my dad wrote that got included in a recent healthrising post. The part written by my dad is quoted below: I was very grateful he wrote it and thought it was really well done.

This thread has been split in order to create an In Memory thread for Merryn. To leave tributes to Merryn please go to: https://www.s4me.info/threads/in-memory-of-merryn-croft.3302/ This thread remains here to discuss media coverage :cry: Bed-bound and in unimaginable pain, watching my...

Patient perceptions of barriers to effective migraine management in Aotearoa New Zealand Blair McInnarney; Fiona Imlach; Jonathan Kennedy; Susan M. Garrett INTRODUCTION Migraine is a complex neurological condition which requires evidence based treatment, tailored to the individual...

The Untapped Power of “We Don't Know”: Epistemological Humility in the Era of COVID-19 Jolaade Kalinowski; Elizabeth A. Hintz; Chigozirim Izeogu The SARS-CoV-2 (COVID-19) pandemic introduced many challenges and nuances that have transformed medical practice and research. The uncertainty caused...

Abstract The present study contributes to an expanding literature investigating the systemic and structural issues that serve to disadvantage disabled academics. Individual interviews were conducted with ten female academics, each with a long-term condition impacting on energy levels and/or...

Now published - link here ******** Preprint From @MSEsperanza: "The idea of rehabilitation needs to be completely rethought for this disease" A qualitative analysis of patients' experiences with inpatient rehabilitation for long/post COVID, Hammer et al [full text in German only] Abstract...

Full title: ‘We have no services for you… so you have to make the best out of it’: A qualitative study of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients’ dissatisfaction with healthcare services Introduction People should have access to healthcare services that are effective, safe...

Full title: ‘I just need to know what they are and if you can help me’: Medicalization and the search for legitimacy in people diagnosed with non-epileptic attack disorder Highlights In-depth qualitative interviews with people with functional seizures and identify the social challenges of...

A thread for general news, events, articles etc from Austria and Switzerland.

https://www.bmj.com/content/382/bmj.p1983

World Psychiatry Journal The lived experience of depression: a bottom-up review co-written by experts by experience and academics Paolo Fusar-Poli, Andrés Estradé, Giovanni Stanghellini, Cecilia Maria Esposito, René Rosfort, Milena Mancini, Peter Norman, Julieann Cullen, Miracle Adesina, Gema...

https://www.uptodate.com/contents/patient-perspective-myalgic-encephalomyelitis-chronic-fatigue-syndrome Patient perspective: Myalgic encephalomyelitis/chronic fatigue syndrome Outline INTRODUCTION BACKGROUND MY INITIAL SYMPTOMS Fatigue Muscle pain Poor exercise tolerance Headaches and...