Response To NICE 10 Year Surveillance (2017) – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis



From Invest in ME Research.


Response by Invest in ME – First Thoughts

Invest in ME Research have submitted a response to the request for comments on the
NICE guideline on CG53 Chronic fatigue syndrome/myalgic encephalomyelitis: diagnosis and management Surveillance proposal consultation document.

Invest in ME Research submitted a response in excess of 8000 words after analysing the document thoroughly.

NICE have decided “to not update the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis” at this time.

NICE propose to remove the guideline from the static list because:

” Evidence has been identified of important ongoing research in this area – for example a UK trial of internet-based cognitive behavioural therapy in children and young adults (FITNET).
This guideline therefore no longer meets the static list criteria.
NICE also state –
We propose to liaise with Cochrane about the possibility of updating a Cochrane review from 2008 on cognitive behavioural therapy for chronic fatigue syndrome in adults to include data from the ‘Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation’ (PACE) trial. A further review of the guideline may be considered following publication of the updated Cochrane review. “

Firstly it should be remembered that NICE gave Invest in ME Research only two weeks to make these comments – with a very short period beforehand of notification.

To read the full response, click on the link below:


Link to NICE story

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