Andy
Retired committee member
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 the second part (Who the guideline is for) can be found here, and for the third part (What the guideline will cover) here.)
Section 1. Why the guideline is needed.
This guideline scope uses the term 'ME/CFS' but this is one of a number of names that have been used to describe this illness. It is recognised that there are people who need care but who may not meet existing clinical or research criteria.
ME/CFS is a disabling and distressing illness characterised by extreme and debilitating fatigue, particularly after exertion. Clinically, ME/CFS is heterogeneous and multifactorial and people experience the illness differently. Common symptoms include chronic pain, disordered sleep, digestive problems and cognitive difficulties. For most people with ME/CFS, everyday life is severely disrupted and a complete recovery is unusual, although this can vary depending on the age of onset.
The causes of ME/CFS are unknown but there are thought to be many contributing factors. One commonly reported trigger is the onset of a viral illness and post-viral malaise, although the reasons for this being a trigger for ME/CFS are not understood. The lack of understanding of the aetiology of the condition has contributed to a number of different symptom-based definitions being used in research and in clinical care. Ongoing research into the causes and pathological processes underlying the symptoms of ME/CFS includes examination of immune function, autonomic function, neuroendocrine disorders and gene expression.
The estimated minimum prevalence rate of ME/CFS in the UK was 0.2% for people meeting either the Centers for Disease Control and Prevention (CDC) or Canadian case definitions in a UK primary care cross-sectional study. People with ME/CFS report delays in diagnosis, and research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage ME/CFS. However, a review of diagnoses at a referral centre found that 40% of people referred did not have CFS but had fatigue associated with another chronic disease; a primary sleep disorder; a psychological or psychiatric illness; or a cardiovascular disorder. In the same review, 5.2% of all the people referred did not have a clear cause identified to explain their fatigue.
People with ME/CFS have reported a lack of understanding among health and social care professionals about their illness and related problems. There are added issues for children, young people and their carers when illness makes school attendance difficult and families come to the attention of educational and social care services.
The previous NICE guideline (CG53) made recommendations on the use of cognitive behavioural therapy (CBT) and graded exercise therapy (GET). The evidence supporting these interventions has been challenged and some people with ME/CFS report being pressured to participate in exercise programmes, leading to a worsening of symptoms. There is therefore a need to review the evidence for these and other interventions.
ETA: Additional text and link back to original draft thread.
(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 the second part (Who the guideline is for) can be found here, and for the third part (What the guideline will cover) here.)
Section 1. Why the guideline is needed.
This guideline scope uses the term 'ME/CFS' but this is one of a number of names that have been used to describe this illness. It is recognised that there are people who need care but who may not meet existing clinical or research criteria.
ME/CFS is a disabling and distressing illness characterised by extreme and debilitating fatigue, particularly after exertion. Clinically, ME/CFS is heterogeneous and multifactorial and people experience the illness differently. Common symptoms include chronic pain, disordered sleep, digestive problems and cognitive difficulties. For most people with ME/CFS, everyday life is severely disrupted and a complete recovery is unusual, although this can vary depending on the age of onset.
The causes of ME/CFS are unknown but there are thought to be many contributing factors. One commonly reported trigger is the onset of a viral illness and post-viral malaise, although the reasons for this being a trigger for ME/CFS are not understood. The lack of understanding of the aetiology of the condition has contributed to a number of different symptom-based definitions being used in research and in clinical care. Ongoing research into the causes and pathological processes underlying the symptoms of ME/CFS includes examination of immune function, autonomic function, neuroendocrine disorders and gene expression.
The estimated minimum prevalence rate of ME/CFS in the UK was 0.2% for people meeting either the Centers for Disease Control and Prevention (CDC) or Canadian case definitions in a UK primary care cross-sectional study. People with ME/CFS report delays in diagnosis, and research has highlighted that many GPs lack the confidence and knowledge to diagnose and manage ME/CFS. However, a review of diagnoses at a referral centre found that 40% of people referred did not have CFS but had fatigue associated with another chronic disease; a primary sleep disorder; a psychological or psychiatric illness; or a cardiovascular disorder. In the same review, 5.2% of all the people referred did not have a clear cause identified to explain their fatigue.
People with ME/CFS have reported a lack of understanding among health and social care professionals about their illness and related problems. There are added issues for children, young people and their carers when illness makes school attendance difficult and families come to the attention of educational and social care services.
The previous NICE guideline (CG53) made recommendations on the use of cognitive behavioural therapy (CBT) and graded exercise therapy (GET). The evidence supporting these interventions has been challenged and some people with ME/CFS report being pressured to participate in exercise programmes, leading to a worsening of symptoms. There is therefore a need to review the evidence for these and other interventions.
ETA: Additional text and link back to original draft thread.
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