patient experience

Very good writing here….(cancer, not ME/CFS). “Are you someone who enjoys the unsolicited opinions of strangers and acquaintances? If so, I can’t recommend cancer highly enough.”

Highlights • Long Covid is a patient-defined illness which gained legitimacy in online communities. • We analysed long Covid narratives using socio-narratology. • Narrators used literary devices to make sense of illness and persuade their audiences. • A unique feature of many narratives was...

Jennie Jacques on living with ME: ‘I am a shadow of my former self physically’ , The Times, August 18 2021 by Sean O' Neill As her 30th birthday approached, Jennie Jacques was on the up and on the verge of a breakthrough to big-screen stardom. The British actress had played the leading part of...

I have no idea what this is like. Free full text https://journals.sagepub.com/doi/full/10.1177/23743735211034962 Successful Psychological Strategies of Experienced Chronic Fatigue Patients: A Qualitative Study Katherine H Hall, BSc(Med), BA, MBBS, PhD, FRNZCGP, Claire Amos, BSc(Hons)...

Is this more likely due to an immune system problem? For me there came a point where after many years with very severe ME where resting finally helped to move me down a level. I am now over 25 years into ME and would describe myself as moderate with the very odd severe bout. I have a resting...

Full title: “Because the country, it seems though, has turned their back on me”: Experiences of institutional betrayal among veterans living with Gulf War Illness Highlights • Institutional betrayal can occur when institutions fail to protect constituents from harm. • Veterans living with Gulf...

A young person who thinks there are effective treatments for cfs. https://bmjpaedsopen.bmj.com/content/5/1/e001165

The German/French TV channel ARTE premiered a documentary yesterday: "Living with Chronic Fatigue Syndrome". German and French can be chosen as languages, subtitles are available in English, Italian and Spanish. It can be viewed online here and will also come to YouTube...

Listen on https://anchor.fm/i-am-madeline

This is long. If any one reads it, and have any information about some of the questions i have in there, especially if anyone have information about any other lawsuits against him (non PR related that is), i'd be interested in hearing from you. I still get the occasional panick attack when...

Abstract In the present study we conduct a systematic review to evaluate the needs and experience of people with pediatric multiple sclerosis (MS) and their caregivers. The literature search was conducted across 10 academic databases, adhering to PRISMA-P guidelines. Quality appraisal was...

https://meassociation.org.uk/2021/06/guest-blog-the-shame/

Abstract Objective: How can it be that a disease as serious as CFS affecting such a large number of people could be so unknown to the general population? The answer given to this question is based on Pierre Bourdieu’s analyzes of symbolic violence. Method: The “letters to the editor” by CFS...

Video: Fatigue, Pacing and PEM Management | Lessons from ME/CFS - With Dr Ben Marsh I know this video has been mentioned on another thread but I think it might have been missed by many and deserves a thread of its own. In Episode 3 of our expert interviews series, Dr Asad Khan talks to Dr Ben...

Full title: Elements of Suffering in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Experience of Loss, Grief, Stigma, and Trauma in the Severely and Very Severely Affected Abstract People who are severely and very severely affected by Myalgic Encephalomyelitis/Chronic Fatigue Syndrome...

https://journals.sagepub.com/doi/full/10.1177/13634593211017187 Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine “It’s not all nice and fun”: Narrating contested illness on YouTube and Instagram Irene Groenevelt First Published May 25, 2021 Research...

https://www.cambridge-news.co.uk/news/health/me-cfs-personal-story-20562798 Another local article with Dr Mark Harper, chair of the Cambridge ME support group. He seems to be doing a great job at reaching out. The article is quite long and first focuses on his own personal story with ME/CFS...

full article here https://uk.sports.yahoo.com/news/mysterious-condition-leaving-women-home-043200000.html

This looks sympathetic, though I haven't read it through. https://www.tandfonline.com/doi/full/10.1080/08870446.2021.1901900 Psychology & Health. 2021 Apr 19;1-17. doi: 10.1080/08870446.2021.1901900. Online ahead of print. What is it like to live with medically unexplained physical symptoms...

https://the-slow-lane.com/2021/04/11/happy-with-my-lot/ "I seem to baffle some people, because I’m upbeat despite my situation; a situation that they deem to be the absolute pits. Some don’t know what to do with me because of my attitude. I don’t fit with their preconceived idea that people...