patient experience

I don't think this article from yesterday has been shared yet on the forum? Nice to see coverage from Canada. White Rock woman shares her struggle with "horrendous" fatigue A report from the Myalgic Encephalomyelitis & Fibromyalgia Society of BC says that Canadian ME research is “essentially...

Living with an unsociable illness full blog here http://notjusttired.com/2019/04/18/living-with-an-unsociable-illness/

https://2tired.weebly.com/home/dismissal-of-young-people-with-me-by-nhs-professionals

https://www.meaction.net/2019/04/12/toxic-masculinity-made-my-me-much-more-punishing/

ME Association: Forward ME and Oxford Brookes University Announce Results of Patient Survey on CBT and GET in ME/CFS | 03 April 2019 https://www.meassociation.org.uk/2019/04/forward-me-and-oxford-brookes-university-announce-results-of-patient-survey-on-cbt-and-get-in-me-cfs-03-april-2019/ Lady...

not very well written (a couple of half-quotes that don't make much sense). Also, although it initially says a 'crippling rare illness', at the end it gives the 250,000 UK and 17m figure worldwide........'rare'?? there is also an instant poll to identify if readers are ME sufferers/know...

Becky Hatfield is trying to get a bagful of letters together for Steve Brine (think he is still Under Secretary of State for Department of Health and Social Care.....things are changing so rapidly in UK Govt). There has been a disappointing response to her Twitter and Facebook requests. so I am...

Sunday Times publishes three readers accounts of their personal experiences of ME. https://www.thetimes.co.uk/magazine/style/readers-stories-myalgic-encephalomyelitis-me-chronic-fatigue-syndrome-7ghbwdkbj And at the bottom Shame they don't tackle their own ignorance..

a clinical research study by a third-year medical student at Cardiff University http://wames.org.uk/cms-english/2019/03/impact-of-me-cfs-on-patients-their-family-volunteers-needed/

https://www.tandfonline.com/doi/abs/10.1080/07399332.2018.1521811?journalCode=uhcw20 Journal: Health Care for Women International Dismissing chronic illness: A qualitative analysis of negative health care experiences Leonard Jason et al.

https://blogs.bmj.com/bmj/2019/02/08/hilde-t-myrhaug-and-tone-hansen-co-producing-a-systematic-review-with-patients/ I thought that this was of interest for showing how patients can end up pushing for a more 'positive' presentation of results if they've had a positive experience with a...

Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much A biopsychosocial camp has contended since the 1990s that regardless of how it starts, people with ME/CFS dig themselves into a hole with their attitudes and behaviors, leading to physical deconditioning (sort of the...

https://inews.co.uk/news/real-life/disabled-man-left-humiliated-wet-himself-in-airport-after-begged-for-help/?fbclid=IwAR1VvnsRoqE4K1Cjmffc-72Kg1mYZe8ir8JLJGQFiCCKF6p5en0VqHzzEeE Absolutely appalling treatment of this poor guy while travelling. Disgraceful. And what he's trying to do to give...

Worth a read. Considers how patient feedback is viewed by health professionals and managers and cultural problems that PWME will likely recognise. and https://blogs.bmj.com/bmj/2019/02/05/miles-sibley-the-language-used-to-describe-patient-feedback-has-a-detrimental-influence-on-safety-culture/

An article about the young couple Jasmine and Alex. Jasmine has epilepsy, ME and POTS and uses a wheel chair. They talk about the prejudice they meet. Disabled woman slams strangers who mistake her boyfriend for her carer While the young couple are stronger than ever, Jasmine does still find...

Open access at https://onlinelibrary.wiley.com/doi/full/10.1111/hex.12857

(I don't understand why it says 'The Telegraph' when it seems to be a Yahoo article, but I'm just copying what came) Source: The Telegraph Datd: January 5, 2019 Author: Simon Briggs URL: https://uk.sports.yahoo.com/news/katie-boulter-exclusive-interview-apos-080000913.html Katie Boulter...

https://spark.adobe.com/page/uNLWHP6la8KmK/

The late Dr. Ann Macintyre's Frontline television program from the 1990s.

Devendorf, A. R., Brown, A. A., & Jason, L. A. Chronic Illness Paywall https://journals.sagepub.com/doi/10.1177/1742395318815965