As a stakeholder WAMES has been informed about NICE plans regarding the 2007 CFS/ME guideline and will be participating fully:

I am writing to advise you that NICE has commenced its formal check of the need to update the clinical guideline CG53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management.

In 2014 this guideline was added to the clinical guidelines static list as no quality standard had been commissioned for this topic and no major ongoing studies completing within the next 3-5 years were identified. Guidelines on the static list remain in existence and will be considered for new evidence at 5-year intervals. In the case of CG53 the static list review was due in 2019. However, if important new evidence is notified we can remove the guideline from the static list and carry out a full guideline surveillance review.

In 2015 we were advised of 3 US reports that indicated there are likely to be changes in the diagnostic criteria in this field that will have implications for the guideline in the future, but not until after the proposed 2 year validation of the diagnostic criteria is completed.  In view of these reports we have decided to commence a formal check of the need to update the guideline earlier than the 5 year interval.  We have since been made aware of new information about the 2011 PACE trial, and we will also consider that in the review.

The guideline surveillance review has been scheduled for review at the beginning of 2017 and a decision is expected to be published by summer 2017. A surveillance report will be developed to communicate the update decision and provide a commentary on approximately 3 articles felt to be of particular interest within this topic.  The exact publication date will depend on the progress of the review and the proposed update decision.  We will email stakeholders when the report has been published.

There will be a 2-week consultation with registered stakeholders if information summarised indicates that a ‘no update’ decision should be considered.  There is no consultation if the decision is to update the guideline because it has been based on the availability of new evidence, and is usually supported by stakeholders. It is important to note that if the decision is to update the guideline then the update will be developed in accordance with NICE processes for updating guidelines.  The timescales for any update of the guideline will depend on the size and extent of the required update and available capacity.

Consultation dates and times are posted in advance on the guideline page on the NICE website, and stakeholders are reminded by email.

Administrator Surveillance Reviews

NICE Centre for Guidelines

National Institute for Health and Care Excellence Level 1A, City Tower, Piccadilly Plaza, Manchester M1 4BT     www.nice.org.uk

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