Thank you for helping with our formal response to NICE!

December 21, 2020


Russell Fleming, Content Manager, ME Association

We wanted to say thank you to everyone who sent in their feedback on the new draft of the NICE clinical guideline for ME/CFS. We submitted the formal response to NICE as part of the stakeholder review process last Friday.

We highlighted several items we felt were of particular importance or might be challenging to implement, and many suggestions that would improve the final publication (in April 2021).

In general, the ME Association welcomes the new guideline and believes it will help improve NHS provision for people with the condition, but there were elements that we felt could be improved and we have described these in the formal response.

All in all the ME Association response contained 171 comments relating to the main aspects of the draft. We highlighted 13 specific areas of concern/improvement that included:

  • Healthcare professional involvement
  • Covid-19 and ME/CFS Clinical Vulnerability
  • Guideline implementation
  • Including an introduction and overview of ME/CFS
  • Improving Box 1 – the symptoms suggestive of ME/CFS
  • Including specifics relating to exclusionary testing and co-morbidities
  • ME/CFS Specialist Services
  • Home visits and appointments
  • Hospital care
  • Illness management
  • Symptom management
  • Psychological support
  • Medical reviews

We will issue a summary of the formal response in due course and it will be featured in the next issue of ME Essential magazine. We will also be producing a summary information leaflet for the draft guideline in January.

NICE will be publishing all stakeholder responses at some point in 2021 before final publication of the new guideline.

Wishing you all a comfortable and safe Christmas! 🙂

The ME Association

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