News

NICE clarifies Agenda and Discussion Points

NICE have published both a more detailed agenda and a list of discussion points for the 18th October roundtable meeting which will help map the future of the paused ME/CFS guideline.

The Agenda is as follows –

Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management

Roundtable discussion – Agenda

18th October 2021 – 14:00-17:00
Thames Room, 2nd Floor 2 Redman Place, London, E20 1JQ

Chair:
Carol Black Roundtable Chair

External attendees:

25% M.E. Group
Academy of Medical Royal Colleges
Action for ME
British Association for CFS/ME
Chartered Society of Physiotherapy
Forward-M.E.
#ME Action
The ME Association
ME Research UK
The ME Trust
NHS England & NHS Improvement
Royal College of General Practitioners
Royal College of Occupational Therapists
Royal College of Paediatrics and Child Health
Royal College of Physicians
Royal College of Psychiatrists
Science for ME
Tymes Trust

NICE & Guideline developer attendees:

Gillian Leng Chief Executive
Paul Chrisp Director, Centre for Guidelines
Christine Carson Programme Director, Centre for Guidelines
Peter Barry ME/CFS Guideline Chair
Ilora Finlay ME/CFS Guideline Vice Chair
Kate Kelley Developer Guideline Lead
Philip Alderson Clinical Adviser
Toni Tan Technical Adviser
Rupert Franklin Senior Guideline Commissioning Manager
Rebecca Smith Associate Director External Communications
Helen Finn Senior Communications Manager
Philip Ranson Media Relations Manage

Objectives:
• To set out NICE’s approach to developing the ME/CFS guideline.
• To discuss and understand the concerns that have been raised regarding the
guideline.

Agenda ItemTitleLead
1Welcome
• Introductions
• Aims and objectives of the meeting
• Code of conduct for the meeting
Chair
2Principles of guideline development
• Overview of NICE’s guideline development process
Paul Chrisp
3Guideline Summary
• Summary of the content of the guideline
• Explanation of the rationale behind some key
recommendations
• Methodological approach
Peter Barry
4Diagnosis
5Graded Exercise Therapy
BREAK
6Children and Young People
7Cognitive Behavioural Therapy
8Next Steps
• Summary of the next steps following the roundtable
discussion
Paul Chrisp
9Summary of discussion and any other business
• Summary of the discussion
• AOB
Chair

All

NICE has also published a summary of issues to be discussed.

ME/CFS Summary of issues

The following list is a summary of key themes that have been raised by stakeholders
regarding the content of the pre-publication version of the ME/CFS guideline.


1) Diagnosis – Questions have been raised regarding the diagnostic criteria that
the committee have recommended.

2) Children and young people – There is concern that the recommendations
potentially create risks for children and young people with ME/CFS.

3) Graded Exercise Therapy (GET) – There are questions about the
recommendation not to offer programmes that use fixed incremental
increases in physical activity or exercise, for example GET. In particular the
definition of GET, that positive evidence for GET has been downgraded, and
removing GET as a treatment option may lead to a reduction in services
overall

4) Cognitive behavioural therapy (CBT) – There are questions about the place
of CBT in individualised management. In particular that there is positive
evidence which has been downgraded, and that the guideline downplays the
effectiveness of CBT.

5) Methodological approach – There are questions about the approach taken
to the evidence, with suggestions that studies have been inappropriately
excluded or downgraded