NICE outlines steps needed to put ME/CFS guideline into practice

Many of the recommendations in the guideline represent a change to current practice and will, due to the nature of those changes, take the NHS, education, social care and integrated care systems some time to implement, says NICE.
NICE outlines steps needed to put ME/CFS guideline into practice

NICE has today, on International ME Awareness Day, published its implementation statement which sets out the practical steps needed to put its recent guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS) into practice.

The NICE guideline on ME/CFS was published in October 2021 and covers every aspect of the condition in children, young people and adults from its identification and assessment before and after diagnosis to its management, monitoring and review. It also highlights what support should be offered to people with suspected or diagnosed ME/CFS and their families and carers, and what information, education and support should be available for health and social care professionals.


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This short review highlights key points from the NICE committee’s rationale on some of the new or changed recommendations in the diagnosis and management of ME/CFS. It also outlines how they might impact on clinical practice.

Quickly review the main recommendations of relevance to primary care with this downloadable guideline summary, which includes the diagnosis criteria and outlines the requirements for primary care reviews.

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Many of the recommendations in the guideline represent a change to current practice and will, due to the nature of those changes, take the NHS, education, social care and integrated care systems some time to implement. The NICE implementation statement highlights the areas that will have the most need to be considered by local commissioners and providers of health, education, social care and integrated care systems to comply with the recommendations in the guideline. These include:

  • Commissioners should ensure the availability of experts in secondary care to provide guidance to primary care
  • Providers and other organisations should update their training for health and social care staff (including those in training) to ensure that up-to-date recommendations and safeguarding implications are disseminated across the health and social care system.
  • Commissioners and providers should ensure that provision for increased access to early paediatric review for further assessment and investigation for ME/CFS is available where need is identified.
  • Commissioners and providers should be aware that investment will be needed to increase the number of specialist clinics and specialists with expertise to formally diagnose ME/CFS and develop a care and support plan where need is identified.
  • Commissioners should review funding and capacity in primary care, ME/CFS specialist clinics and paediatric clinics to enable the recommended appointments where need is identified.

Paul Chrisp, director of the Centre for Guidelines at NICE, said: “Our guideline on ME/CFS provides clear support for people living with ME/CFS, their families and carers, and for clinicians. It uses 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.

With no nationally commissioned service for ME/CFS in either primary or secondary care, it will be for local systems to determine how to structure their services to achieve the aims of the guideline.

"Today’s implementation statement will build upon the widespread support from system partners and the ME/CFS community for the guideline and enable them to work together to make sure its important recommendations are implemented.”

Health and Social Care Secretary Sajid Javid said:

“This implementation statement is a step towards better diagnosis, assessment and symptom support for people with ME, or chronic fatigue system, to ensure they get timely support and the acknowledgement they deserve.

We will  be developing our own delivery plan later this year and will be working with stakeholders to understand how we can improve experiences and outcomes for people with these debilitating conditions. There is more to be done to better support for children and adults with the condition and the government is committed to doing this.

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