patient experience

I haven't seen this posted. It's a personal account by a UK pwME who participated in a study, pre-PACE, using GET/CBT. Very unfortunately, and fairly predictably the author of this story worsened from this treatment. She notes that some others in the study did not have symptoms like hers...

So one challenge that I believe we face is that if most, if not all, research studies insist on PEM as part of the inclusion criteria, we run the risk of mild sufferers not recognising PEM for what it is. For example, CCC description of PEM and ICC description of PENE I would not have...

Trish Greenhalgh is professor of primary care health sciences at the University of Oxford. https://blogs.bmj.com/bmj/2019/11/12/trisha-greenhalgh-towards-an-institute-for-patient-led-research/ see also this thread...

Moderator note: The first 8 posts on this thread have been moved from here. ____________________________________ Is there any systematic research into the “ lived experience” of pwme. I am not familiar with any. Also, has Nice collected ( or commissioned) any such research ( if there is any)...

I've written a blog post about the recent amendment to the Cochrane review and how it doesn't address the major flaws. I will post the full text below as this makes it easier to quote and discuss...

Your experience of ME services - Survey report by #MEAction UK Article: https://www.meaction.net/2019/10/17/me-services-in-the-uk-not-fit-for-purpose/ Full report: https://www.meaction.net/wp-content/uploads/2019/10/Your-experience-of-ME-services-Survey-report-by-MEAction-UK.pdf Results...

Excellent article in Huff Post by a woman with ME who was told to exercise, and suffered as a result. https://www.huffingtonpost.co.uk/entry/disability-undefeatable_uk_5d921745e4b0019647ac4b29

write up on AfME website: https://www.actionforme.org.uk/news/bella-magazine-please-believe-me/ includes link to scan of article: https://www.actionforme.org.uk/uploads/images/2019/09/bella-please-believe-me.pdf still saying CBT is perfectly acceptable hmm Clare Ogden AfME double hmm

full title Dear Doctor: What Not to Say to Me and Other Fibromyalgia Patients although the author has ME/CFS full blog here https://themighty.com/2019/09/things-doctors-say-fibromyalgia-patients/

article here https://www.cornwalllive.com/news/cornwall-news/woman-trapped-inside-home-describes-3286934 (not sure why she is having to crowd fund for this(?) there is the Motability scheme) https://www.motability.co.uk/about-the-scheme/personal-independence-payment/

https://blogs.scientificamerican.com/observations/a-streamlined-pathway-to-drug-approval/ Author advocates for using patient experience data and open trials in lieu of RCT.

I have no idea what this might be like. I just thought it was interesting to see "loss of resources" mentioned in a paper. There is also a "loss of resources inventory" mentioned. I think people with ME/CFS can have huge losses of resources. Keywords Demoralization COR theory Loss of resources...

https://www.meassociation.org.uk/2019/08/theres-no-point-in-me-having-a-netflix-subscription-or-an-audible-account-by-anna-wood-07-august-2019/

https://www.meassociation.org.uk/2019/08/my-daughter-and-the-pervasive-dangers-of-pace-in-paediatric-m-e-by-adam-johnson-06-august-2019/

Paywall, https://link.springer.com/article/10.1007%2Fs40271-019-00379-6 Sci hub, https://sci-hub.se/10.1007/s40271-019-00379-6

This looks like it could be very annoying https://journals.sagepub.com/doi/abs/10.1177/1367493519864745

Source: Psychology of Men & Masculinity Preprint Date: April 30, 2019 URL: https://www.dora.dmu.ac.uk/handle/2086/17973 'The real me shining through M.E.': Visualizing masculinity and identity threat in men with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome using photovoice and IPA...

https://www.facebook.com/CarolMonaghanSNP/posts/2012644808862705

A young woman with very severe ME contacted me to help tell her story. Over the past couple of months she’s told her harrowing story of mistreatment, including two visits to psychiatric facilities. Right now she is in an awful situation, so sick she can’t tolerate people in the same room and...

By Open Medicine Foundation full article here: https://www.sanluisobispo.com/news/state/california/article229756099.html [have looked at the link but can't find the published paper?] eta: link now works this one takes you to where it's listed...