patient experience

https://www.actionforme.org.uk/news/experiences-of-m.e.-featured-in-dear-chronic-illness/ Spoonie survival kit website, https://www.spooniesurvivalkits.com/2018/04/26/dear-chronic-illness-our-very-own-book-release/

sorry I’m on my phone and can’t cut and paste the info from Facebook Rough summary this is a place where people with can anonymously post their stories of poor treatment or neglect by health service due to predudice and belief ME Is psychosomatic. Clare Geradas worst nightmare.

https://www.huffingtonpost.co.uk/entry/because-of-me-i-can-only-imagine-being-the-mum-that-others-get-to-be_uk_5af2f208e4b00a3224ef5ca9

Here's one of the better personal stories about life with ME that I've read recently: http://www.eveningecho.ie/opinion/ME-is-a-blight-on-my-life-but-my-art-helps-4f94dbce-18b7-4226-91a2-5ddc6664b5c7-ds "So, for now, I will leave it to my puppets to tell the story of M.E. The personal, and the...

One person's account of his experiences and consequences of forced GET. https://spiritofbelerion.wordpress.com/2018/04/03/the-struggle-continues/amp

(Merged threads) Not listened to this yet, but saw it being praised on social media. Might only be available to UK listeners? [Although Mattie goes on to say "works just fine here. (Netherlands)"] From 1hr 16min: https://www.bbc.co.uk/programmes/p062zk4f#play

https://www.liverpoolecho.co.uk/news/liverpool-news/devastating-leaves-teen-girl-unable-14534145

I Am Stuck In The Prison That Is ME Ellie Bunce https://www.huffingtonpost.co.uk/entry/i-am-stuck-in-the-prison-that-is-me_uk_5acf4ab8e4b0648767777931

http://www.bbc.com/news/av/health-43519487/why-i-want-to-lie-down-in-public To hear Raquel’s full story, listen to this podcast from Radio 4’s Four Thought: http://www.bbc.co.uk/programmes/b09pmbdp

A short piece by Lisa Alioto about her ME experience For the full article https://uk.news.yahoo.com/life-changed-since-developed-cfs-224720668.html

Hi all. BBC Radio Jersey very kindly interviewed me about my ME, today. It’s an hour-long interview, and you’ll find it two hours into this programme link, if you wanted to take a listen. ❤️ http://www.bbc.co.uk/programmes/p05x7wqd

The PRIME project: developing a patient evidence‐base Sophie Staniszewska, DPhil (Oxon) BSc (Hons), 1 Sally Crowe, Post Graduate Diploma, 2 Douglas Badenoch, MSc, 3 Carol Edwards, BA MSc PhD, 4 Jan Savage, RN BSc (Hons) PhD, 5 and Will Norman, PhD MA (Hons) 6 Acknowledgements We are grateful...

North-east family speak of ME ordeal January 30, 2018 https://www.pressandjournal.co.uk/fp/uncategorized/1402870/exclusive-north-east-family-speak-of-me-ordeal/ They are presumably talking about Esther Crawley's service

Well-written and accurate awareness articles keep coming -- this one from the January 11, 2018 edition of the Arizona Jewish Post: https://azjewishpost.com/2018/disease-nearly-keeps-winner-from-jewish-women-who-dared-awards/ A few excerpts: "On this day, in the spring of 2003, I pushed past...

Article by Caroline Christian " Yesterday I woke to a blue rose. I should have known something was wrong when there was very little activity in my favorite ME/CFS groups on Facebook. Blue rose days are like that. The community retreats in silence and grief on these days. We are afraid to admit...

Searched for this but wasn't able to find it - so apologies if it's already been posted. This is a five minute video from a couple of months ago that explains the life of a freelance writer / comedian who has ME. I thought it was worth posting as it manages to also link in general societal...

Not terrible, I suppose. http://www.mirror.co.uk/news/real-life-stories/my-body-shut-down-woman-11620598

In Times this morning. Posted for information. It is a sympathetic article by Broadbent. https://www.thetimes.co.uk/article/muslim-fighter-with-me-who-left-an-arranged-marriage-to-win-world-title-svxhhzt57

Severely affected ME (Myalgic Encephalomyelitis) analysis report on questionnaire 25% ME Group (UK) 2004 Link to survey ME 2008: What progress Action for ME and Association of Young People with ME (UK) 2008 Link to survey Ervaringen van de achterban van patiëntenorganisaties met de...

This thread has been split from the 'News from Scandinavia' thread Thought it might be useful to have a thread on news from Scandinavia. Hopefully it can become an archive and useful as a reference in future. Starting with the kickoff of one of the four research projects which recently got...