patient experience

https://www.neural.org.uk/patient-experience-survey/

it’s towards the end of the day and I just saw this, perhaps there isn’t time and we should keep it in mind for next year. (Assuming it’s a regular thing) https://www.theberylinstitute.org/page/PXInnovationAwards

Taken from a blog originally from 2011 but the comments go on to 2018; other comments: in the interest of being equipoise, a more positive comment (although Dr Murphy knew that the patient was a medical student): full blog here...

English overview, http://www.steungroep.nl/images/her_keuring_WIA_of_WAO/Her_keuringen_algemeen/Summary Ervaringen met UWV150dpi.pdf Dutch full report...

From two days ago but I don't think it's been posted here yet: SBS Insight by Simon Del Favero: I was in denial and ashamed by my CFS Looking to the future I am heartened by the rapidly accelerating research breakthroughs that are happening internationally. Since I was first diagnosed in 2011...

A blog about personal experience of PACE recommended 'treatments' published earlier this year. https://mookpixie-chronicills.blogspot.com/2018/03/the-pace-trial-complaint.html

This starts with some Action for ME video that I've seen before. Then it goes on to discuss the young woman's case, and progression to full-time work!!! There is also a link to the NHS page which still recommends CBT and GET... Station: TeessideLive / AfME Date: September 2, 2018 WebTV...

Would someone who's on twitter please make this dutch journalist aware of... - the S4ME PACE briefing paper: https://www.s4me.info/threads/science-for-me-pace-briefing-document.3140/#post-55894 - Graham's video...

Sally DohertySaturday 25 Aug 2018 2:06 pm " I wake late, drag myself out from under my duvet and stumble to the kitchen. It would be a relief to have breakfast in bed but my husband works full time. He’s left me a bowl and a spoon on the side, and a sandwich awaits me in the fridge for lunch...

" I’m not proud of cursing out a former GP. On top of that, I think she may have been even shorter than me, a very petite and soft-spoken woman. I had been going to her for over a year, and I was back for a routine follow-up. I was feeling especially exhausted that day. I must have looked it...

Perhaps there is something interesting or more likely annoying (!) in this. Free full text: https://bjgp.org/content/early/2018/07/30/bjgp18X698321 Research Patients’ perspectives on GP interactions after cognitive behavioural therapy for refractory IBS: a qualitative study in UK primary and...

Huffington Post: Having ME Is Like Being Permanently Encased In A Suit Of Armour https://m.huffingtonpost.co.uk/amp/entry/myalgic-encephalomyelitis-how-it-feels_uk_5b61badbe4b0fd5c73d524cc/ I have, for a long time, struggled to fully get across the impact this illness has on my life...

I was surprised that there doesn't seem to be a thread on this paper given it discusses a few times the survey that was run here. In this case, I found it difficult to know whether to put this in the biomedical or psychosocial research section. I didn't think it was a good fit for either...

Oxfordshire ME Group for Action (OMEGA) Experiences of Children with ME July 2018 Main Report http://www.trevwilliams.co.uk/OMEGA%20Report%20Children's%20Experiences%20of%20ME.pdf Executive Summary...

http://journals.sagepub.com/doi/10.1177/1359105318785450 Full paper available here, http://sci-hub.tw/10.1177/1359105318785450

https://coach.nine.com.au/2018/07/03/18/52/chronic-fatigue-syndrome-myalgic-encephalomyelitis The article is very good. Dr. Mark Guthridge is inerviewed about ME/CFS and the patient experience is well written. An accurate easy read.

This thread has been started as a place where reports from PACE trial participants can be recorded. Edit - the scope of the thread has since been widened to all CBT and GET trials.

Jessica Taylor-Bearman's kickstarter-funded book is out on 3rd July,

https://www.tandfonline.com/doi/abs/10.1080/09638288.2018.1481149?journalCode=idre20

Moderator note: Please be aware that this thread is not in the Members Only Section and therefore content is available to search engines. I have reported to the Financial Conduct Authority that companies are still including ME in mental health exclusions which goes against all the guidelines...