As a stakeholder in the NICE CFS/ME guideline working group WAMES has received the following letter from NICE:


Level 1A, City Tower
Piccadilly Plaza
M1 4BT

Tel: 0300 323 0140     Fax: 0845 003 7784

Dear Colleague

RE: NICE guideline on CG53 Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management

I am writing to let you know that, after considering the evidence and consulting with experts, we have provisionally decided not to update this guideline. We would like to hear your views on the proposal.

To comment, please see the consultation page on our website.

The consultation will close at 5pm Friday, 21 July 2017. We regret that we will not be able to consider any comments after this date.

We would like to thank you for your continued support and your interest in NICE guidelines.

If you have any queries please do not hesitate to contact me at

Kind regards

Surveillance Team
NICE Centre for Guidelines
National Institute for Health and Care Excellence
Level 1A | City Tower | Piccadilly Plaza | Manchester M1 4BT | United Kingdom

WAMES will be responding. Please contact Jan or Sylvia with any points you think we should be making. We believe it is important that all stakeholders make as full a response as possible, and one that accurately conveys the views of the people we represent.

The deadline for responses has now been amended to 24 July 2017 at 9am.

Everybody can record their dissatisfaction with NICE’s proposal by signing the ME Association’s petition: The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision

There were over 5,700 signatures within 48 hours!  Anyone from any country can sign – a large number of signatures would make a powerful point. Pass the word on! Deadline 17 July.

[Please note that any request for money on the petition site is from, not the MEA]

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