By Dr Charles Shepherd, Hon. Medical Adviser, ME Association.
Last Thursday, the ME Association as stakeholders in the ME/CFS clinical guideline review received a draft scoping report from NICE.
The draft scoping report sets out the parameters by which NICE will create the content for the new guideline for ME/CFS and it will be discussed at the scoping workshop for stakeholders this coming Friday.
There will then be a short period of consultation, whereby stakeholders can feed back any comments or concerns about the draft scope, before the appointed guideline development group get to work on the main content.
The schedule is as follows (although this may be subject to change):
| Scoping workshop | 25 May 2018 |
| Committee member recruitment | 21 June 2018 – 19 July 2018 |
| Draft scope consultation | 21 June 2018 – 26 July 2018 |
| Draft guidance consultation | 14 April 2020 – 26 May 2020 |
| Expected publication | 14 October 2020 |
We will update you with more information following Friday's meeting, including how to apply for the lay member recruitment to the guideline development group.
At this stage, please do not forward any comments about the content of the new guideline, or tell us what you feel is wrong with the current guideline.
We will let you know when we are ready for your feedback, and we are currently considering a survey for this purpose.
In advance of Friday's meeting we just wanted to let you know what was happening, and show you the draft scoping report. Following the meeting, we will then ask for any feedback you might like to give.
Notes
- The 2018 Draft Scoping Report for the New NICE ME/CFS clinical guideline
- The 2015 Final Scoping Report for the Current NICE CFS/ME clinical guideline
I have learned that the Lightning Process is being considered in the Guideline Review process. I am sorry if this is the wrong place to post this but I haven’t been able to find the right place.
As an expert in NLP and a very well-informed PWME, I have written an authoritative account of
the principles on which the Lightning Process is based and exactly why it poses a serious danger to PWME. The link is here:
http://www.positivehealth.com/article/cfs-me/me-cfs-nlp-and-the-lightning-process-in-the-looking-glass
Please study this article and disseminate it as widely as possible especially to all involved in or influential in the Guideline Review process.