Dr Shepherd's report on yesterday's stakeholders' meeting at NICE

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http://www.meassociation.org.uk/201...eport-by-dr-charles-shepherd-17-january-2017/

Dr Shepherd's report on yesterday's stakeholders' Engagement Workshop for NICE

Reviewing the NICE guideline for ME/CFS: The Stakeholders Engagement Workshop – A Report by Dr Charles Shepherd | 17 January 2017


Dr Charles Shepherd summarises the key points to emerge from the NICE Stakeholders Engagement Workshop that took place on Tuesday 16th January 2018.

Introduction

Following the very welcome news from NICE at the end of last year that they had decided to produce a completely new guideline on ME/CFS, stakeholders in the current guideline were invited to a meeting in London yesterday.

The purpose of this workshop meeting was to (a) allow NICE to explain how the new guideline on ME/CFS would be prepared and (b) hear from stakeholders what they wanted the new guideline to deal with – as well as what they did not want it to deal with.

There were around 60 stakeholders present – consisting of representatives from most of the ME/CFS charities and some of the local NHS clinics, patients, carers and parents of children with ME/CFS, and several doctors and other health professionals.

Among the doctor’s present were Dr Abhijit Chaudhuri, Professor Jonathan Edwards, Dr Luis Nacul (from the ME Biobank); Dr Paul Worthley (ME Trust), Professor Michael Sharpe and Dr William Weir.

The Countess of Mar was also present to represent the Forward ME group of charities.

NICE presentations

Stakeholders were placed into small groups on a table and the meeting was split into two sections. The first section involved a series of short presentations from senior people at NICE who are going to be playing a key role in the development of this guideline.

Dr Philip Alderson, Clinical Adviser at NICE, welcomed everyone.

Professor Mark Baker, Centre for Guidelines Director, spoke about how NICE had now accepted that the current guideline was no longer meeting the needs of people with ME/CFS and that they needed to prepare a completely new guideline.

Dr Nora O’Flynn, Chief Operating Officer at the National Guideline Centre, explained how the work on this guideline would be based at the Royal College of Physicians and the way in which it would be prepared. This presentation contained some important practical information on the timeline:

• Scope Stakeholder Workshop on May 25th
• Scope consultation from 21st June to 19th July
• Advertising for guideline committee members from 21st June to 19th July
• First guideline committee meetings will start at the end of November 2018
• Guideline development process will take about 70 weeks