guidelines

https://www.everydayhealth.com/multiple-sclerosis/treatment/new-guidelines-ms-treatment-start-treatment-early/

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...

Tomorrow at 20:00 on the "NOS Journaal" (dutch national news): An item on ME/CFS as the Dutch Health Council will publish their long awaited advice/guidelines on ME/CFS tomorrow. Also a radio item on this tomorrow morning between 06:00 and 09:30 on NPO1-radio, I have not yet found the exact...

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...

Not sure if this has been posted. (MD is a member of S4ME) Clinical Guidance for ME: “Evidence-Based” Guidance Gone Awry Mary Dimmock January 2018 " This article is intended as a high-level summary of key issues in the conduct of reviews of the ME evidence-base that have resulted in flawed...

Although not new, this publication from 2005 is new to me. The complete title is: "Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists" Nothing to fear here . . . it was written by a Canadian psychiatrist (Eleanor Stein) who has both personal and clinical...

The new German "guideline tiredness" was published today. ME doesn't get its own guideline in Germany, only a chapter in the "guideline tiredness". It's basically the German NICE guideline for ME. It was last updated in 2011...

This was highlighted on @Tom Kindlon 's Facebook page. Delightful presentation from just under a year ago from King's Health Partners (https://www.kingshealthpartners.org/), explaining how, among other conditions, CFS is a MUS (or Persistent Physical Symptoms condition, the term us patients...

Joint Commissioning Panel for Mental Health Guidance for commissioners of services for people with medically unexplained symptoms pge 6 Functional somatic syndromes by specialty Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis https://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf

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

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...

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...

For reference really. Not only are there a lot of psychs and BPS influences there, but some others seem like strange groups to be stakeholders. Original list at https://www.nice.org.uk/guidance/cg53/documents/chronic-fatigue-syndrome-myalgic-encephalomyelitis-list-of-stakeholders4 ETA...

by James C Coyne December 07, 2017 https://www.coyneoftherealm.com/blogs/news/coyne-of-the-realm-s-open-letter-to-the-national-health-and-research-medical-centre-nhmrc-of-australia