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 Links may be to updated documents as older versions superceded and deleted.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 2021 | New guideline on ‘Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management’ (NG206) published with associated tools and resources. |
28 October 2021 | NICE give notice that new guideline to be published on 29th October 2021 |
20 October 2021 | NICE announce guideline to be published following meeting of its Executive Committee w/c 25th October 2021. |
18 October 2021 | Roundtable discussion held. Minutes of Meeting. |
13 October 2021 | Detailed agenda (including participants) and discussion points released by NICE |
12 October 2021 | NICE release roundtable agenda |
21 September 2021 | NICE announce date for rescheduled roundtable meeting – 18th October 2021 |
September 2021 | Roundtable discussion due, and then postponed |
27 August 2021 | NICE 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 2021 | Date guidance due to be published |
17 August 2021 | Stakeholders receive email announcing ‘pausing’ of publication of guideline. |
August 2021 | bmj announce departure of 4 members of NICE guideline development committee |
August 2021 | Stakeholders receive advance copies of guideline |
28 July 2021 | Equality impact assessment published |
29 April 2021 | Guideline 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 2021 | Target 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 2020 | Draft guidance consultation |
09 November 2020 | Stakeholder list updated |
09 November 2020 | Declaration of interests |
14 October 2020 | Target date for guideline due to be published |
10 September 2020 | Pre-consultation documents released |
13 July 2020 | Statement |
10 July 2020 | Statement 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 2019 | Call for evidence |
18 September 2019 | Committee meeting |
08 August 2019 | Committee list updated |
16 October 2018 | Scope published |
21 June 2018 – 26 July 2018 | Draft scope consultation |
20 June 2018 | Scoping workshop notes |
25 May 2018 | Scoping workshop held |
16 January 2018 | Review documents |
16 January 2018 | Stakeholder 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) |