Reviewing the NICE guideline for ME/CFS: The Stakeholders Engagement Workshop – A Report by Dr Charles Shepherd | 17 January 2018

January 17, 2018


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


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

The development process will involve:

  • Discussion and preparation of the Scope of the guideline – i.e. what it is going to cover and not cover
  • Dealing with important clinical questions
  • Reviewing of the protocols
  • Obtaining evidence reports covering clinical and economic evidence. The systematic review of published evidence will be carried out internally at NICE this time

And on the membership of the guideline committee:

  • This will be multidisciplinary as far as health professionals are concerned with 10 to 12 members
  • Up to 4 lay members – patients and carers who will be expected to make a significant input

The position of Chair of the Guideline Committee is currently being advertised and interviews will take place in February.

Victoria Thomas, Head of the Public Involvement Programme at NICE, spoke about the role of patient participation in the development of NICE guidelines and outlined how patients and patient representatives could get involved in due course through the Public Involvement Programme.


The main part of the meeting was then devoted to round the table discussions on what people wanted to see in the new guideline – with a member of NICE staff facilitating, asking questions and recording comments.

The discussion on our table, which included Dr Luis Nacul and Dr William Weir, covered a very wide range of topics:

  • Nomenclature (ME, CFS, SEID etc) and the various clinical and research diagnostic criteria currently in use (e.g. Oxford, IOM, Canadian) – including what should this guideline be called in relation to ME and CFS nomenclature
  • Clear guidance on the importance of an early and accurate diagnosis in primary care
  • The role of investigations – baseline and the use of additional investigations (excluding Lyme disease for example) where appropriate
  • The importance of appropriate personalised management, especially in relation to rest and pacing, during the very early stages of an ME/CFS like illness
  • Activity management:  Pacing, harmful effects of GET, exercise physiology testing (VanNess et al)
  • The importance of collecting and making use of clinician and patient evidence – as occurred in the CMO Working Group Report
  • Problems faced by children and adolescents with ME/CFS – including lack of NHS referral services, education issues and inappropriate child care proceedings
  • Severe ME/CFS – including how to define mild, moderate and severe ME/CFS and the use of disability rating scales and functional impairment assessments
  • Overlapping conditions e.g. hypermobility syndromes; IBS; migraine type headaches

Overall, this meeting represents a very encouraging and constructive start to work on the new NICE guideline. And as I know from several previous meetings with Professor Baker, he is genuinely interested and concerned about the criticisms of the current guideline that have been made by the patient community and wants to make sure that the new guideline is fit for purpose and acceptable to the patient community.

Unfortunately, starting from scratch means that the new guideline will not be published till October 2020. In the meantime, it looks as though the recommendations in the current guideline will remain – but this is another matter for discussion with NICE.

Dr Charles Shepherd, Hon. Medical Adviser to the ME Association.

Additional information:

  1. Minutes for the last Forward ME group meeting with Professor Mark Baker at the House of Lords.
  2. ME Association website news item covering the NICE decision to review and update the guideline.
  3. ME Association petition and our letter to Sir Andrew Dillon calling for a new guideline.
  4. ME Association submission on why the NICE guideline needed to be rewritten.


2 thoughts on “Reviewing the NICE guideline for ME/CFS: The Stakeholders Engagement Workshop – A Report by Dr Charles Shepherd | 17 January 2018”

  1. Once again many,many thanks to Dr. Shepherd and all our committed advocates present at the recent workshop.October 2020 does seem an unbearable wait before we receive new guidelines,however the long march,although glacial,towards vindication is now more certain of success. The process alone gives us all HOPE,the importance of which can never be overstated!

  2. Thank you for this report Dr Shepherd.
    My heart sank when I saw Prof Michael Sharpe’s name mentioned amongst those attending.
    In spite of the substantial dents inflicted on his credibility as a researcher, he doesn’t lack confidence does he? Maybe that’s the very definition of arrogance.
    With Prof Peter White now being a discredited (and supposedly retired) leading figure, Sharpe is evidently going to take over as the new “front man” for the Wessely school psychobabblers.
    If NICE are going to remain true to their word, it’s vital that Sharpe (and his ilk) are carefully sidelined, whilst maintaining the pretence of listening to their nonsense.
    One thing is for sure, these people are relentless in their quest to inflict their flawed theories upon the world. They must be stopped.

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