NICE guideline Update – Meeting Announced

Statement received by stakeholders today 27th August 2021

NICE announces next steps for ME/CFS guideline

NICE recognises the importance to patients of the updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) and is keen to move forwards as quickly as possible.

Following the pause to the publication of the guideline NICE has today, 27 August 2021, announced that it is to hold a roundtable event to better understand the issues raised and determine how it can gain support for the guideline to ensure effective implementation.

The meeting, which will be held in September 2021, will have an independent chair and will include representatives from patient organisations and charities, relevant professional societies and from NHS England and NHS Improvement, NICE and the guideline committee.

Paul Chrisp, director for the Centre for Guidelines at NICE, said: “Our aim throughout this process has been to use the best available evidence as well as the lived experience of people with ME/CFS to address and resolve the continuing debate about the best approach to treating people living with this debilitating condition. We remain optimistic that we can reach a way forward to publish a guideline that will have the support of people living with ME/CFS, the people who care for them and the professionals who treat them.”

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