On 20th September 2017, NICE announced that following a stakeholder consultation on its plan not to update the 2007 guideline ‘Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy: diagnosis and management’ (CG53), “broader issues with the guideline were highlighted that called into question the guideline scope and its current relevance. After further consideration of information from stakeholders including new evidence (see appendix B: summary of evidence highlighted to NICE during consultation, and appendix C: stakeholder consultation comments table) alongside the evidence identified through the surveillance review, NICE has decided to fully update the guideline with a modified scope.”

As part of the process to replace the guideline by October 2020, NICE held a Stakeholder Engagement Workshop in London on 16th January. Having submitted comments as a stakeholder to NICE as part of the Consultation, ME Research UK was represented at the workshop by Vice Chair, Mrs Sue Waddle. Commenting on the Workshop, Sue gives her views on the meeting and information about the stages of the review.

“This meeting was extremely encouraging. Professor Mark Baker (Director of the Centre for Guideline at NICE) is determined to ‘do the right thing’ – and he does listen. So, I am hopeful that the outcome will be more favourable in the upcoming guideline than the present version. I also think that I have got through to him over the last year on the principle of “First, do no harm” in regard to Graded Exercise Therapy [GET] and that they may take the unusual step of issuing an Interim Advisory Note before the next version of the guideline is published.

The National Guideline Centre has contracted the Royal College of Physicians to develop ‘Guidance’ since 2016, following a smaller activity started in 2009. It has a staff of about 50 people to support a Guideline Committee that has approximately 16 ‘slots’ per year. The Development Process covers: Defining the Scope; Address Clinical Questions; Reviewing Protocols; Generating Reports to cover Clinical and Economic Evidence; and, Generating Recommendations.

The Guideline Committee usually consists of members (not representatives) of :

  • 10-12 Healthcare professionals providing multi-disciplinary inputs from topic area specialists and generalists; and
  • 2 Lay Members representing Patients and Carers.

However, for the ME Guideline Committee will be extended to permit up to 4 Lay Members. The timeline for the ME Guideline Committee has been established by NICE as follows:

Scope Stakeholder Workshop 25 May 2018
Scope Consultation 21 June – 19 July 2018
Advert for Committee Members 21 June – 19 July 2018
First Guideline Committee Meetings from End November 2018
Guideline Development Process nominally 70 weeks
Guideline Consultation Process expected to start April 2020

The Core Principles for developing all NICE Guidance cover:

  • the establishment of Independent Advisory Committees;
  • the establishment of a Comprehensive Evidence Base;

and all

  • receive Expert Input;
  • have Public Involvement;
  • include Genuine Consultation;
  • are subject to Regular Review;
  • operate under an open and transparent process; and,
  • consider Social Values and Equity.

The NICE Charter states that “The expertise, insight and input of Lay Members is essential to the development of all NICE guidance and advice, and helps NICE to make sure that our work reflects the needs and priorities of those who will be affected by them.”
The NICE Public Involvement Programme encourages appropriate organisations to register as Stakeholders; facilitates recruitment of patient, carer and service user members to NICE committees; provides on-going support and training to individuals and organisations; and, supports individuals and organisations in getting NICE guidance into practice.

From mid-2018 the NICE web site will go live to support advertising for ME Guidance Committee.”