Myalgic encephalomyelitis and chronic fatigue syndrome

Mike shares views about NICE guidelines for Myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS).

I sympathise profoundly with anyone affected by ME. It is a highly complex condition and I believe it is vital that patients are given the treatment and care that takes account of their particular needs. I pay tribute to the work undertaken by groups such as the #MEAction network, and charities including Action for ME and the ME Association, which provide vital support and advice to people living with the condition.

The independent National Institute for Health and Care Excellence (NICE) issued clinical guidelines on ME and CFS in 2007. This guidance sets out best practice in the diagnosis, care, treatment and support of people with ME and CFS. 

NICE had initially assessed that no update to the existing guidelines on CFS/ME would be required. However, following a consultation with stakeholders, NICE confirmed on 20 September 2017 that it is planning a full update with a modified scope.  

NICE acknowledged stakeholder concerns that existing guidance was not up-to-date, and therefore patients are not receiving the full picture on recommended treatments, such as studies that have shown inefficacy of cognitive behavioural therapy (CBT) or harms of graded exercise therapy (GET). 

I appreciate that ME and CFS are serious conditions that remain poorly understood. I agree that local and national Government, as well as public services, need to take this into account and improve our knowledge and treatment of these conditions. 


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