NICE Guideline ME/CFS Scoping Workshop
On Friday 25 May WAMES will be representing people with ME and their families and carers at the NICE guideline scoping workshop in London.
The meeting will last 2 ½ hours and we will be discussing the guideline scope.
Guideline scope
1. Why the guideline is needed
2. Who the guideline is for
3 What the guideline will cover
3.1 Who is the focus?
3.2 Settings i.e. NHS or social care
3.3 Activities, services or aspects of care
Key areas that will be covered:
1 Identification and assessment before diagnosis
2 Diagnosis of ME/CFS
3 Management of ME/CFS
4 Monitoring and review
5 Information, education and support for people with suspected and diagnosed ME/CFS, their families and carers
Areas that will not be covered:
1 The management of comorbid conditions
2 The specific management of symptoms where NICE guidance already exists (see below related NICE guidelines)
3.4 Economic aspects
We will take economic aspects into account when making recommendations. We will develop an economic plan that states for each review question (or key area in the scope) whether economic considerations are relevant, and if so whether this is an area that should be prioritised for economic modelling and analysis. We will review the economic evidence and carry out economic analyses, using an NHS and Personal Social Services perspective.
3.5 Key issues and draft questions
While writing this scope, we have identified the following key issues and draft question related to them:
1 Identification and assessment before diagnosis
1.1 In whom should ME/CFS be suspected?
1.2 What is the most clinically and cost effective method of assessing people with suspected ME/CFS?
1.3 Can disability or assessment scales aid the identification of people with ME/CFS?
1.4 What are the barriers and facilitators to the identification of ME/CFS?
2 Diagnosis of ME/CFS
2.1 What tests are clinically and cost effective in supporting or excluding a diagnosis of ME/CFS?
2.2 In people with suspected ME/CFS how accurate are the criteria used to establish the diagnosis?
3 Management of ME/CFS
3.1 What is the clinical and cost effectiveness of pharmacological interventions for people with ME/CFS?
3.2 What is the clinical and cost effectiveness of non-pharmacological interventions for people with ME/CFS (including dietary supplementation, graded exercise therapy, pacing, the Lightning Process and 20 psychological interventions such as CBT)?
3.3 What is the clinical and cost effectiveness of self-management strategies such as heart rate monitors for people with ME/CFS?
4 Monitoring and review
4.1 What is the most clinically and cost effective method of monitoring people with ME/CFS?
4.2 What is the most clinically and cost effective method of reviewing people with ME/CFS?
5 Information and support for people with suspected and diagnosed ME/CFS?
5.1 What information and support do people with ME/CFS and their families / carers require?
6 Main outcomes
The main outcomes that may be considered when searching for and assessing the evidence are:
1 Quality of life (for example EQ-5D, SF-36)
2 Pain
3 Fatigue
4 Physical functioning (a person’s ability to do everyday tasks and activities)
5 Psychological well-being
6 Care needs
Download the full scoping document
Contact Jan if you have any comments jan@wames.org.uk
