NICE has arranged a meeting in September 2021 to consult on the delayed myalgic encephalomyelitis/chronic fatigue syndrome guideline (ME/CFS)

After publication of the upcoming NICE guideline covering the diagnosis and management of ME/CFS was paused in August 2021, NICE has announced that they will be holding a meeting in September 2021.

The meeting aims to help NICE better understand the issues raised during the guideline consultation, in accordance with issues raised during the pre-publication period of the final guideline. In August, NICE said that ‘in order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved.

In addition to NHS England, NHS Improvement, NICE, and the guideline committee, the meeting will include representatives from patient organisations and charities and relevant professional societies. It is hoped that the meeting will help determine how NICE can gain support for the guideline and hence ensure it can be implemented effectively.

Paul Chrisp, director for the Centre of 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.

The updated guideline is expected to update and replace NICE clinical guideline 5, Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management, published in August 2007.