patient experience

Free full text: https://bjgpopen.org/content/early/2020/10/12/bjgpopen20X101143

A few years ago, my friend and colleague Steven Lubet, a law professor and scholar at Northwestern University, wrote the following account of the start of his struggle with what was then largely called chronic fatigue syndrome. While his story does not directly relate to current events, Steve’s...

Preprint paper here: Persistent symptoms after Covid-19: qualitative study of 114 long Covid patients and draft quality criteria for services Emma Ladds, Alexander Rushforth, Sietse Wieringa, Sharon Taylor, Clare Rayner, Laiba Husain, Trisha Greenhalgh This article is a preprint and has not...

Paywall, https://www.tandfonline.com/doi/full/10.1080/09593985.2020.1830454 Sci hub, unable to access

This thread includes posts from threads on articles in the New Yorker and the Guardian. Any new articles should be posted here. Quote from the New Yorker article: (https://www.newyorker.com/magazine/2020/09/14/susanna-clarkes-fantasy-world-of-interiors?) "She has been given various...

https://the-slow-lane.com/

https://bmjopen.bmj.com/content/10/7/e035833.info eta:

New thread created for posting any videos and blogs about people with ME experiences of CBT the first three posts have been moved from CBT for Chronic Fatigue Syndrome (CFS) - Psychology tools.com Bit of a mixed bag of messages. CBT THERAPY for CHRONIC FATIGUE SYNDROME Why is it controversial...

http://whri.org/calling-all-physicians-specialists-allied-health-clinical-operations-leads-and-other-clinicians/ eta: also here https://www.bcmj.org/blog/seeking-physicians-input-what-your-experience-myalgic-encephalomyelitis

http://www.meresearch.org.uk/our-research/living-with-severe-me/

International Journal of Qualitative Studies on Health and Wellbeing Patient's experiences and effects of non-pharmacological treatment for myalgic encephalomyelitis/chronic fatigue syndrome - Anne Marit Mengshoel, Ingrid B. Helland, Mira Meeu, Jesus Castro-Marrero, Derek Pheby & Elin Bolle...

http://anilvanderzee.com/the-fear-in-my-doctors-eyes/

https://www.washingtonpost.com/lifestyle/2020/05/08/what-i-learned-watching-my-mom-parent-with-disability/ Brittany Collins, author The mom has ME. May be paywalled.

https://www.tandfonline.com/doi/full/10.1080/21641846.2020.1751455 Australian research KEYWORDS: ME/CFS, fibromyalgia, aqua exercise, patient experience, qualitative

Note from Moderators: IiME created the EMEA, and also the EMECC (Clinicians Council) and the EMERG (Research Group). The EMEA is a member of EFNA (the European Federation of Neurological Associations). A number of threads have been merged to create this thread. ******************** Invest...

We've been discussing the name here: https://www.s4me.info/threads/me-seid-a-more-accurate-illness-name-than-me-cfs-words-only-nothing-to-do-with-diagnostic-criteria.13858/ And discussing the term "fatigue" here...

Daily Mail: EXCLUSIVE: Barely able to leave the house, told they are exaggerating and even that their ailment does not exist: Three ME patients reveal their daily struggle with the crippling condition...

Hi all, Please consider completing this research survey from Marta Encefalomielitis Miálgica on Facebook's son : Hello! I am a fourth-year student at the University of Aberdeen studying a joint honours degree in International Relations-Sociology. I am currently doing my Bachelor's...

From: Dr. Marc-Alexander Fluks

https://www.examinerlive.co.uk/news/west-yorkshire-news/picture-hides-illness-can-make-17432787 I feel sorry for the author