nice

NICE's Consideration of the Lightning Process Here’s an e-mail I sent last Thursday to two key members of the NICE guidance executive, Sir Andrew Dillon and Professor Mark Baker. I also cc’d several stakeholders as well as Fiona Godlee, the editor-in-chief of The BMJ and editorial director of...

Old, 2nd Oct 2017, article. https://www.npr.org/sections/health-shots/2017/10/02/554369327/for-people-with-chronic-fatigue-syndrome-more-exercise-isnt-better Linked to from a recently found Reader's Digest article on 'Fitness Myths' -...

Note: this is from 2016. It's new to me but may be familiar to others. Paywalled at http://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(15)00545-3/abstract Article in the Guardian, again from 2016...

As a NICE stakeholder, S4ME can have input on this update process. I can't imagine that there is much, if any, interest here, we've got lots of other things to be getting on with, but just in case somebody wants to look at it...

Posted elsewhere but creating a new thread for maximum visibility. Each stakeholder organisation is able to put forward two representatives again, currently S4ME only has Jo Edwards to represent us, so is there anybody who wants to go as our second rep? We would expect our rep to support the...

We think we have got what we need now. Thanks. I'm working with a few people to write something about the PACE trial. Can anyone recall, ideally with a link, NICE saying previously they were not updating their guidelines due to the results of the PACE trial? I think it refers to keeping CFS/ME...

Finally received email confirmation of this: Dear Colleague, NICE guideline: Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (Oct 2020) https://www.nice.org.uk/guidance/indevelopment/gid-ng10091 Guideline scoping workshop on Friday 25 May...

Here is a copy of the SCOPE used for the existing NICE CFS/ME Guideline I think that the next NICE stakeholders meeting 25/5 will be on a new scope. Any suggestions for how we can improve the SCOPE this time? I'm going to try and go through this old Scope and find parts that contributed to the...

I got asked to put these online. Not had a chance to read them yet myself, but apparently there may be some final minutes missing, as apparently they could not be found. They are numbered from 1-16, but I had difficulty getting them to attach in the right order. Sorry for any confusion.

NICE has promised to review its current guidelines on ME/CFS, which is not scheduled to be completed until 2020. Meanwhile it has left the current guidelines in place, despite the recommendations for treatments that are known to be harmful...

Martyn Hooper Chair of Pernicious Anaemia Society on new NICE guidelines for ME: "Last week I was at a NICE consultation which was looking at the problems with the diagnosis of Myalgic Encephalopathy (or encephalomyelitis). Because there are so many contentious issues concerning the disease...

https://spoonseeker.com/2018/01/28/an-offer-you-cant-refuse/

I've put both a report of my impressions of the meeting, and my list of points to raise, into this blog post. http://sallyjustme.blogspot.co.uk/2018/01/nice-stakeholder-meeting-for-cg53.html Both items also exist as "Notes" on my Facebook wall..... And now I need to sleep... xx

In short they are asking for GET and CBT to be removed as treatments before the review concludes in 2020. Core of first letter Core of Mark Baker's reply And core of IiME response Link leads to, at time of posting, all three letters - http://www.investinme.org/IIMER-Newslet-1801-01.shtml

This was created to support @Graham 's open letter, which can be found here, https://www.s4me.info/threads/grahams-finalised-letter-to-nice-january-2018.1885/ https://www.change.org/p/sir-andrew-dillon-we-call-on-nice-to-ensure-the-guideline-committee-for-me-cfs-is-transparently-unbiased ETA...

This letter will be sent to Sir Andrew Dillon, chief executive of NICE, on Monday 16th January. This thread is locked so that any replies and subsequent communication can be shown here. There is a parallel thread, called "Proposed letter to NICE", where you can comment if you wish. Graham has...

As it seems a lot of people go on to develop ME following a virus (children in partic seem particularly susceptible after mono,EBV), I thought I'd take a look at the NICE guidelines for EBV. " Management How should I manage a person with suspected or confirmed glandular fever? Give information...

I was wondering if anyone knows how a NICE stakeholder meeting works? I am guessing that our “CFS/ME” one will be well attended, so I’m wondering what opportunity there might be for those present to express concerns? I have been told that patient concerns are generally taken very seriously...

We intend to send this letter to Sir Andrew Dillon (NICE) early in January. I don't know whether any of you would like to add your (real) names to it or not: although a clear and logical explanation should not need the added weight of extra names, I'm not convinced that many medical...

https://www.nice.org.uk/get-involved/join-a-committee/chair--diagnosis-and-management-cfs-me-gc Any volunteers?? ;)