Free Booklet: An ME Association Summary of the New NICE Guideline for ME/CFS

January 6, 2022


We are delighted to offer a free booklet that explains the new NICE clinical guideline and how it will affect the service that people with ME/CFS can expect from the NHS and social care in England, Wales, and Northern Ireland.

The booklet features the main clinical recommendations from the guideline which we hope will be effectively implemented by healthcare providers as soon as possible. It has been written by Dr Charles Shepherd, Hon Medical Adviser to the ME Association and Member of the NICE guideline committee (2019 – 2021).

“We now have a guideline that has properly recognised this complex medical condition and recommends improvements to the level of service that patients can expect from the NHS and social care services.”

Dr Charles Shepherd, Hon. Medical Adviser to the ME Association and Member of the NICE Guideline Committee (2019-21)

Introduction

The National Institute for Health and Care Excellence (NICE) recently published a new clinical guideline about ME/CFS (NG206) for use by the NHS and social care services in England, Wales, and Northern Ireland. It is also recognised in Scotland.

The ME Association is delighted that the guideline has been published and we fully support the recommendations that it contains. It has also been supported by the British Association of CFS/ME (BACME) – the organisation for health professionals who work in ME/CFS specialist services – and widely welcomed by the patient community.

People with ME/CFS had to live with a previous guideline that was unfit for purpose – because it recommended treatments that were often inappropriate, ineffective, or harmful. After a very thorough review of all the evidence – from clinical trials, experts, and patients – we now have a guideline that has properly recognised this complex medical condition and recommends improvements to the level of service that patients can expect from the NHS and social care services.

There will now be a period of implementation, which could take several years as we work collaboratively with colleagues in the NHS and social care to ensure positive change is brought to existing patient pathways and new services are introduced to help more people with ME/CFS.

Implementation will involve:

  • training health and social care professionals on how to employ the new recommendations,
  • establishing a UK-wide network of hospital-based ME/CFS specialist services,
  • making all NHS services accessible and capable of providing personalised ongoing care and support,
  • ensuring that NHS and social care provision is monitored and regularly reviewed

Overview

The NICE clinical guideline for ME/CFS provides a framework of recommendations to health and social care professionals about the pathway of patient care and it is a useful resource for patients, their carers, and families.

NHS services and what patients can expect:

  • shared decision-making,
  • early symptom recognition,
  • the diagnostic process,
  • how to access secondary care specialist services and the kind of help available to better understand, cope with, and manage this complex and chronic medical condition.

It aims to improve awareness and understanding so that health and social care professionals are better informed and know what to do when someone with suspected symptoms needs an accurate diagnosis, or when someone with a diagnosis needs ongoing care to help them live with ME/CFS.

The guideline is appropriate for children, young people, and adults – and includes specific recommendations for people with severe and very severe ME/CFS, an addition that is especially welcome…

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