carers

“I feel like a ghost.” How included to children and young people with chronic conditions feel in their education, and what can we learn from their lived experiences? As a parent of a young person with ME/CFS, as well as a special education teacher, I bring these two aspects of my identity...

Presentation Name of the event: 19th Biennial European Society for Health and Medical Sociology Conference Sted: Forli, Italy Date from: 25 August 2022 Date until: 27 August 2022 Organizer: Arrangørnavn: European Society for Health and Medical Sociology About the result Scientific lecture Year...

authors: Siobhan O’Dwyer, senior lecturer in ageing and family care1, Sarah Boothby, former carer2, Georgia Smith, research fellow1, Lucy Biddle, senior lecturer3, Nina Muirhead, dermatology surgeon4, Sharmila Khot, consultant in anaesthesia, intensive care, and pain medicine5 The recent...

https://www.disabilitynewsservice.com/disabled-peer-secures-victory-over-government-on-domestic-abuse-bill/

Severe ME: More Notes for Carers by Greg Crowhurst https://www.stonebird.co.uk/

I’m not really posting for discussion but more for information as I don’t think people know about it. We certainly didn’t. My daughter just found out that unpaid carers are now in Group 6 for the Covid 19 vaccination. Only your GP won’t know you’re a carer unless you notify them. My daughter...

Hi all, Just flagging the "MECFS Patient Researcher Accolade Portfolio" @mecfspatientresearchers on Facebook at https://www.facebook.com/mecfspatientresearchers/ You will recognise a number of research heroes. There are other profiles in the works, once gotten round to (energy permitting)...

Paywall, https://content.iospress.com/articles/work/wor203171 Sci hub, https://sci-hub.tw/https://content.iospress.com/articles/work/wor203171

Open access, https://content.iospress.com/articles/work/wor203179

full article here https://www.rsvplive.ie/life/living-with-woman-shares-fears-21787908

full article here https://www.independent.co.uk/life-style/health-and-families/young-carers-charity-support-mental-health-disability-awareness-carers-week-2019-university-a8946801.html

I’m interested in any paper(s) which mentions the challenge for people with ME/CFS who have to juggle their demands of their illness as well as the demands of a caring role (including parenting). I’ve not been able to find anything, but I’m posting here in case anyone else might have something?

On AfME website The article is largely about more help for carers which is important but highlights other problems ie being put in WRAG for ESA resulted in worsening condition; (see AfMEs work leaflet...

Source: Journal of Health Psychology Preprint Date: March 21, 2019 URL: https://journals.sagepub.com/doi/full/10.1177/1359105319834678 Acceptance and identity change: An interpretative phenomenological analysis of carers' experiences in myalgic encephalopathy/chronic fatigue syndrome...

My 33 yr old daughter is 95% bed bound. Ill for 2-3 years, and progressively getting worse though we are trying treatments with a ME specialist in NY. The caretaking support at my local hospital seems to have no knowledge or experience with ME. I'm looking for resources for caretaking info...

I saw this in the ME Global Chronicle. I haven't watched it myself. I am interested to hear people's thoughts about whether it is worth sharing. --- WellMe AGM 2017 Guest Speaker Phillida Bunkle HD 1080p Wellington ME/CFS Support Group Published on 18 Dec 2017 Talk in the Blind Spot The...