The consultation for the draft scope closes 26 July 2018 at 5pm. Therefore, we need members to look at each section of the draft scope and provide feedback, in order to inform any comment that S4ME may make on the draft. So please read the below and comment away! (Full document can be found here, NICE webpage on the process is here, we did have an initial thread on the draft scope here but these individual threads are to capture comments on the individual sections of the draft. Thread for the first part of the scope (Why the guideline is needed) can be found here, and for the second part (Who the guideline is for) here.) 3. What the guideline will cover 3.1 Who is the focus? Groups that will be covered People with suspected or diagnosed ME/CFS Specific consideration will be given to: children and young people people with severe symptoms. 3.2 Settings Settings that will be covered All settings where NHS or social care is provided or commissioned, including health services related to education and occupational health. 3.3 Activities, services or aspects of care Key areas that will be covered We will look at evidence in the areas below when developing the guideline, but it may not be possible to make recommendations in all the areas. 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, and their families and carers 6 Information, education and support for health and social care professionals. Note that guideline recommendations for medicines will normally fall within licensed indications; exceptionally, and only if clearly supported by evidence, use outside a licensed indication may be recommended. The guideline will assume that prescribers will use a medicine’s summary of product characteristics to inform decisions made with individual patients. Areas that will not be covered 1 The specific management of symptoms where NICE guidance already exists (see below for related NICE guidelines) and management is not expected to be different in ME/CFS Related NICE guidance Published Lyme disease (2018). NICE guideline NG95 Neuropathic pain in adults: pharmacological management in non-specialist settings (2013). NICE guideline CG173 Headaches in over 12s: diagnosis and management (2012). NICE guideline CG150 Common mental health problems: identification and pathways to care (2011). NICE guideline CG123 Irritable bowel syndrome in adults: diagnosis and management (2008). NICE guideline CG61 In development Thyroid disease: assessment and management. NICE guideline. Publication expected November 2019 Chronic pain: assessment and management. NICE guideline. Publication expected January 2020 NICE guidance that will be replaced by this guideline Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management (2007) NICE guideline CG53 NICE guidance about the experience of people using NHS services NICE has produced the following guidance on the experience of people using the NHS. This guideline will not include additional recommendations on these topics unless there are specific issues related to ME/CFS: Medicines optimisation (2015) NICE guideline NG5 Patient experience in adult NHS services (2012) NICE guideline CG138 Service user experience in adult mental health (2011) NICE guideline CG136 Medicines adherence (2009) NICE guideline CG76 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? 1.5 What are the precautionary management strategies that should be adopted before diagnosis? 2 Diagnosis of ME/CFS 2.1 What tests are clinically and cost effective in making a diagnosis of ME/CFS? 2.2 In people with suspected ME/CFS, what are the criteria used to establish a diagnosis? 2.3 What are the barriers and facilitators to the diagnosis of ME/CFS? 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? 3.3 What is the clinical and cost effectiveness of self-management strategies for people with ME/CFS? 3.4 In people with ME/CFS, what is the clinical and cost effectiveness of different models of multidisciplinary team care, including team composition? 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? 4.3 What are the barriers and facilitators to the care of people with ME/CFS? 5 Information, education and support for people with suspected and diagnosed ME/CFS, and their families and carers 5.1 What information, education and support do people with ME/CFS and their families and carers need? 6 Information, education and support for health and social care professionals 6.1 What information, education and support do health and social care professionals who provide care for people with ME/CFS need? 3.6 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 and cognitive functioning (a person's ability to do everyday tasks and activities) 5 Psychological wellbeing 6 Care needs 7 Sleep ETA: Added text and a link back to the original thread on the draft scope release.