nice

I think I remember reading a UK study that characterized patients by NICE, Oxford, and Fukuda and gave the prevalence of each. Does anyone remember that study and if so, could you share the study name or link? Thanks in advance

Download link, https://25megroup.org/download/2302/?v=2840

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...

Open access at https://onlinelibrary.wiley.com/doi/full/10.1002/capr.12141 Posting this as it has been highlighted in the comments of Spoonseeker's latest blog that the concept expressed in this review is to be used to 'lower the bar' that NICE uses to assess treatments by, and therefore "to...

https://spoonseeker.com/2019/01/21/coming-down-the-line/

This is a letter we sent from S4ME to NICE as discussed in a voting thread for those members who have posted enough to have voting rights. Sorry I forgot to post it here earlier

http://www.niceconference.org.uk/about "challenging views", is that code for "completely wrong views"? Or perhaps "views that he has no actual proof for"? Anyway, full agenda here, http://www.niceconference.org.uk/agenda

Moderator note: This post and subsequent discussion have been moved from this thread: Forward ME Group CBT/GET Survey - Tell NICE your experiences I have just telephoned Healthwatch who may be interested to help generally...... More on this later; Policy and Public Affairs Jacob Lant - Head...

Moderator note: post moved from Open - Forward ME Group CBT/GET Survey - Tell NICE your experiences In my latest missive to NICE about LocalME Complaint, I was told that you can't make a complaint against NICE's processes! Perhaps I should copy in the chair PB......and vice chair. I wrote in...

#MEAction article with Forward ME Group statement here Take the Survey The survey closes on 31st January 2019. We are counting on the ME community to spread this across all of their networks, both online and in-person. Tag me if any technical problems with survey and I'll make sure they...

This thread is intended for collecting evidence of harms from GET and other therapies that involve increasing activity and/or exercise. Particularly useful would be any research demonstrating either that GET has directly caused harm, or that research on GET that claims no harm has not properly...

I think it would be useful for all of us, and perhaps for the NICE committee members, to gather together resources about severe and very severe ME. This could include research and patients stories that illustrate good and bad practice in care for the very severely affected.

You may wonder what that picture’s doing here and what that title ‘The Vale of Strange’ is about. It should all become clear as this post progresses. But I think you will agree that ‘The Vale of Strange’ sounds like a fair description of where we find ourselves when we’re trying to argue the...

https://www.meaction.net/2018/12/05/all-i-want-for-christmas-is-sciencenotstigma/

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...

Didn't know where to post this or if it has been posted before; https://www.qmul.ac.uk/wolfson/media/wolfson/ref-2014-results/UoA2-chronic_fatigue_syndrome.pdf We have so much to thank QMUL for

This is a letter we sent from S4ME to NICE as discussed in a voting thread for those members who have posted enough to have voting rights. We are posting here so that it and the responses are available publicly. To: Dr Peter Barry Chair, NICE ME/CFS Guideline committee cc...

https://www.csp.org.uk/frontline/article/childrens-pain-we-can-make-it-better links to FITNET another of NICE guidelines committee members.

Been reading through some documents from the previous NICE guideline procedure (Dolphin posted most of them in this thread). They give some insight into the normal course of events and what we could expect to happen next at NICE. I think at the first stage the Guideline Development Group (GDG...

Some thoughts about NICE In fact, a robust debate about ME/CFS treatments rooted in scientific principles would be welcome, since such a debate has been largely absent in the UK. But it would require the NICE committee to include, in addition to a group of apparent GET/CBT proponents, a...