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


NICE has today, International ME Awareness Day (Thursday, 12 May 2022) 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.

12 May 2022

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.

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 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.”

Read the NICE implementation statement for ME/CFS here

Ingrid Torjesen in The BMJ says the NICE implementation statement is ‘unprecedented’.

“Such statements are only issued when a guideline is expected to have a “substantial” impact on NHS resources, and this is thought to be the first. It outlines the additional infrastructure and training that will be needed in both secondary and primary care to ensure that the updated ME/CFS guideline, published in October 2021, can be implemented. The statement is necessary because the 2021 guideline completely reversed the original 2007 guideline recommendations.”

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