patient experience

https://www.ajourneythroughthefog.co.uk/2021/04/how-the-world-more-accessible-covid-19-pandemic/ "Over the past year through the lockdowns and many restrictions, while healthy non-disabled people have often felt isolated, lonely and frustrated, many of us who are disabled and chronically ill...

This is a beautiful piece about becoming chronically ill, learning to cope under the extreme burden, and accepting a new reality. It was written over the course of a year by Matt Lazell-Fairman, who has ME, and whom I know through his wife Katie. Matt is also the son of Mary Dimmock, who now...

I'm a bit late sharing this, since it was published on March 8, and I keep forgetting to post! But I really enjoyed this essay written by @Michelle : https://www.hippocampusmagazine.com/2021/03/salisbury-steak-day-by-michelle-strausbaugh/

M.E. In BC [British Columbia]: How the healthcare system for M.E. impacts clinicians and patients This is a preliminary study assessing the unmet needs of patients living with ME; 25 patients were either interviewed or participated in a focus group. Over 170 health care professionals/...

Spanish title: Síndrome de fatiga crónica: experiencias de las personas afectadas, práctica clínica y justicia epistémica Looks like it might be a letter to the editor of a Spanish publication. No abstract available. Paywall, https://www.sciencedirect.com/science/article/abs/pii/S1130862121000371

Reverend Joe Haward shares his experiences of having ME and explores the challenges patients face in getting the reality of their lives with the disease heard by professionals and those in positions of power...

The Norwegian ME Association just published an impressive survey on 5.822 ME patients in Norway. An English summary is available here: https://me-foreningen.no/wp-content/uploads/2021/03/Norwegian-ME-Association-2021-Report-on-the-course-of-illness-English-summary.pdf

Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, only partially understood multi-system disease whose onset and severity vary widely. Symptoms include overwhelming fatigue, post-exertional malaise, sleep disruptions, gastrointestinal issues, headaches...

They talk, in the abstract, about chronic fatigue only, but the patients they discuss have gone through a "CFS/ME" assessment, so may or may not have ME. Open access, https://www.tandfonline.com/doi/full/10.1080/01459740.2021.1883011 This part possibly explains a bit more clearly what the...

https://www.theguardian.com/lifeandstyle/2021/feb/06/my-personal-lockdown-has-been-much-longer-on-chronic-illness-before-and-after-covid Not sure if this has been posted

https://www.mdpi.com/2227-9032/9/2/168

From Jamison Hill's blog, Jamison Writes: https://jamisonwrites.com/2021/01/26/my-book-is-officially-published/ MY BOOK IS OFFICIALLY PUBLISHED! Today is a big day — my memoir, When Force Meets Fate, is officially published. In addition to more than 70 reviews on Goodreads (4.66 stars), When...

https://www.virology.ws/2021/01/26/trial-by-error-my-exchange-with-minnesota-medical-center-holding-me-cfs-patient/

Reading quotes from ME patients in George Monbiot’s article on ME/CFS and long covid in the Guardian gave me an idea: could S4ME set up a thread for people with ME/CFS (and maybe their friends, family and carers too) to post testimonies of their experiences of living with ME/CFS? I know that...

Open access, https://www.rcpjournals.org/content/clinmedicine/21/1/59

https://www.mdpi.com/1010-660X/57/1/43/htm

https://mecentraal.wordpress.com/2020/12/15/helsinki-university-hospitals-outpatient-clinic-for-functional-disorders-treats-me-cfs-patients/

Open access, https://www.jmir.org/2020/11/e18691

'Results of probably the largest-ever survey of opinion among people with ME/CFS and their carers about what treatments and therapies work for them and what don’t are available for downloading. The link to the PDF is at the bottom of this story. The survey also shows what people with the...

https://journals.sagepub.com/doi/full/10.1177/0308022620966254