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Our response to draft NICE guideline

December 23, 2020

Action for M.E. has responded to the consultation on the draft National Institute for Health and Care Excellence (NICE) guideline for M.E./CFS. While there are a number of positive changes, more work is needed to ensure this guideline represents the lived experience of people with M.E./CFS and the health and social care support they need.

Our response has been informed by:

  • our 2019 Big Survey of more than 4,000 people with M.E./CFS
  • our recent NICE draft guideline survey with responses from more than 1,500 people
  • our frequent contact with and support of children, young people, adults and families living with M.E./CFS across the UK, through our support services.

This draft guideline is an important step forward. We would like to express our thanks to the Guideline Committee (especially the lay members), expert witnesses and the M.E./CFS community for engaging in every step of the process.

Action for M.E. is pleased to see the experiences of people with M.E./CFS more accurately reflected, especially a reflection of the stigma they so often face. People with M.E./CFS have repeatedly stated the disbelief and harms they experience from some professionals and this draft guideline goes some way to acknowledge that.

We welcome the move away from inappropriate therapies like graded exercise therapy (GET) and cognitive behavioural therapy (CBT) being used as a treatment or cure. Because of the lack of evidenced treatment, strong consideration needs to be given to those with lived experience of M.E./CFS, and greater weight given to patient experience.

We are concerned about some of the definitions used in this guideline and the departure from terms used by many people with M.E./CFS, such as pacing. People with M.E./CFS tell us that this is the most helpful strategy for managing symptoms, and this term should be used throughout the guideline.

The comments detailed in our submission reflect the positives in the guideline but also detail some areas which we remain concerned about such as:

  • the need for more emphasis on patient's personal choices and decision-making power in their relationship with doctors and other healthcare professionals
  • advice on physical activity, which needs strengthening to ensure that it cannot be misused or misinterpreted
  • the exclusive focus on CBT as a means of psychological support, which differs from guidelines for other chronic conditions
  • the lack of detail on the experiences of Black, Asian and minority ethnic people with M.E./CFS
  • the lack of reference to the extent of the isolation that people with M.E./CFS can experience
  • the need for medical education and an extensive campaign to increase awareness and understanding of M.E. among healthcare professionals.

Now that the consultation has closed, the Guideline Committee will consider responses (which will be published on the NICE website) in order to review the draft; the new guideline for M.E./CFS is expected Wednesday 21 April 2021. We would like to thank all those who shared their views with us and/or contributed to our survey, or submitted responses themselves. From the beginning of this process, we have emphasised the importance of NICE listening to people with M.E. and we are pleased to see some evidence of this taking place.