NICE guideline Review – timeline

Given all the delays concerning publication of the NICE guideline it is useful to recall key staging dates in order to give context. With acknowledgement to NICE – we reproduce their timeline leading to the ‘non-publication’ of the new guideline on the diagnosis and management of ME/CFS. Additional items added by ME Research UK are denoted by dates in bold and links are to documents available on the NICE website. Links may be to updated documents as older versions superceded and deleted.

29 October 2021New guideline on ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’ (NG206) published with associated tools and resources.
28 October 2021NICE give notice that new guideline to be published on 29th October 2021
20 October 2021NICE announce guideline to be published following meeting of its Executive Committee w/c 25th October 2021.
18 October 2021Roundtable discussion held. Minutes of Meeting.
13 October 2021Detailed agenda (including participants) and discussion points released by NICE
12 October 2021NICE release roundtable agenda
21 September 2021NICE announce date for rescheduled roundtable meeting – 18th October 2021
September 2021Roundtable discussion due, and then postponed
27 August 2021NICE announce roundtable discussion “to better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation.”
18 August 2021Date guidance due to be published
17 August 2021Stakeholders receive email announcing ‘pausing’ of publication of guideline.
August 2021bmj announce departure of 4 members of NICE guideline development committee
August 2021Stakeholders receive advance copies of guideline
28 July 2021Equality impact assessment published
29 April 2021Guideline committee meeting minutes for period 6th February 2019 to date – completed. Thirty individual meetings having been held and Minutes released individually after each meeting.
21 April 2021Target date for guideline due to be published replacing 9 December 2020
30 March 2021“Because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work needed to respond to them fully, the publication date has changed. The guideline will now publish on 18th August 2021.” NICE
9 December 2020 Target date for guideline due to be published replacing 14 October 2020
10 November 2020 – 22 December 2020Draft guidance consultation
09 November 2020Stakeholder list updated
09 November 2020Declaration of interests
14 October 2020Target date for guideline due to be published
10 September 2020Pre-consultation documents released
13 July 2020Statement
10 July 2020Statement on use of GET and CBT in long-COVID cases
24 June 2020“Due to the need to prioritise work on COVID-19 guidance and to avoid drawing frontline staff away from their clinical work, NICE cancelled all guideline committee meetings. This included meetings for the ME/CFS guideline. NICE have now rescheduled the remaining committee meetings for this guideline and agreed a revised timeline. This means that the consultation on the draft guideline will now start on 10 November, and the guideline will now publish on 21 April 2021.” NICE
05 December 2019“Please note that the publication date for the ME/CFS guideline has changed from 14th October 2020 to 9th December 2020. This is to ensure that the committee have sufficient time to consider both the findings from the call for evidence, and from the two additional pieces of group work we have undertaken in children & young people with ME/CFS, and people with severe ME/CFS. Consultation on the draft guideline will now run from 30th June 2020 to 11th August 2020.” NICE
30 August 2019 – 16 October 2019Call for evidence
18 September 2019Committee meeting
08 August 2019Committee list updated
16 October 2018Scope published
21 June 2018 – 26 July 2018Draft scope consultation
20 June 2018Scoping workshop notes
25 May 2018Scoping workshop held
16 January 2018Review documents
16 January 2018Stakeholder Workshop
20 September 2017 NICE announces it is planning a full update of its guideline on the diagnosis and management of CFS/ME. Guideline Development Process normally lasts 70 weeks (c1 yr 2 months)
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