nice guideline

"In this series, I dig a little deeper into the meaning of psychology-related terms… but not this week. Instead, we’ll take a look at ME/CFS, and why it’s absolutely not all in someone’s head." https://mentalhealthathome.org/2021/07/09/what-is-me-cfs/

I saw this on Reddit. Someone had posted saying they received a letter from their ME/CFS clinic, were dreading what it might be, but it turned out to be an invitation to be part of a patient focus group to provide feedback on the new NICE guideline—which they were happy about. I asked the...

"This guideline covers how to make shared decision making part of everyday care in all healthcare settings. It promotes ways for healthcare professionals and people using services to work together to make decisions about treatment and care. It includes recommendations on training, communicating...

I imagine there is supposed to be a point somewhere in there but all I read is people saying if they had been tasked with it they would have done it differently because they don't like the outcome it gave without being there to change it to their preference. No substantial argument other than...

Vink M, Vink-Niese A. The draft updated NICE guidance for ME/CFS highlights the unreliability of subjective outcome measures in non-blinded trials. Journal of Health Psychology. January 2021 (Editorial), doi:10.1177/1359105321990810...

Split from: NICE ME/CFS guideline - draft published for consultation - 10th November 2020 Updated NICE guidance on chronic fatigue syndrome https://www.bmj.com/content/371/bmj.m4774.full

Moved from this thread: NICE ME/CFS guideline - draft published for consultation - 10th November 2020 Physios for ME View on NICE Guidelines https://www.physiosforme.com/post/physios-for-me-view-on-nice-guidelines

Here is the Science for ME submission to NICE (The UK National Institute for Health and Care Excellence) consultation on its draft guideline: ME/CFS: diagnosis and management The following posts were copied to the NICE template and submitted on 20th December 2020. A PDF version of the...

Copied and discussion moved from this thread: NICE ME/CFS guideline - draft published for consultation - 10th November 2020 The Science Bit by Brian Hughes - No More Mr NICE Guy... NICE’s verdict on psychosocial treatments for ME amounts to nothing less than an utter repudiation. That it...

Thought it could be helpful to have a thread on Jonathan's expert testimony for any further use and citation. Edwards, Jonathan CW (2020), The difficulties of conducting intervention trials for the treatment of myalgic encephalomyelitis/chronic fatigue syndrome: Expert testimony presented to...

MEAction performed a survey earlier this year, gathering data to submit to NICE for their review of the ME guideline. I think there’s already a link to the full report on the forum but just in case, it can be found here...

https://www.nice.org.uk/guidance/indevelopment/gid-ng10091

Just received the following email Dear registered stakeholder, RE: Call for evidence on myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome We need more information to help us develop this NICE guideline. We invite registered stakeholders, and other individuals and...

Moderator note: Copied from thread here https://www.s4me.info/threads/uk-stop-graded-exercise-therapy-for-me-cfs.1301/#post-195995 https://www.meaction.net/2019/08/27/nice-drag-their-feet-on-stopping-the-harm-caused-by-get-and-cbt/

https://www.rcplondon.ac.uk/ngc-guideline-development

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...

Some revelations about shenanigans at NICE - the IAPT team is in charge of the NICE guidelines for ME/CFS - as flagged up by Hope 4 Fibro & ME Northern Ireland - back in 2017!!! According to the IAPT webpage it's still listing the "CFS/ME" guideline as under their control - that's the...

NICE documentation NICE guidelines 2007: Link to document 2007 NICE guidelines setup: General comments from stakeholders (CFS/ME consultation draft 29 September – 24 November 2006) Link to document 2018-2020 NICE guidelines revision: Final scope Link to document Consultation on draft scope...

Appointees will not be changed...so surprising! I sent my email using ME Action tool so assume a generic reply going to all. They can ignore us with no consequences whatsoever. Email below Thank you for your recent email to the National Institute for Health and Care Excellence (NICE), in which...

The issue of GET and safety has of course been much discussed, especially regarding the the PACE trial authors' claims to have demonstrated its safety, versus the fact there exists good quality anecdotal evidence to the contrary. There is however an aspect I'm not sure has been broached, and...