Closed consultation

Improving the experiences of people with ME/CFS: interim delivery plan

We are analysing your feedback

Visit this page again soon to download the outcome to this public feedback.

Detail of feedback received

The Department of Health and Social Care is grateful for stakeholders’ engagement on this topic.

The consultation received 3,338 responses. Of these:

  • 3,113 were from individuals sharing their personal views
  • 125 were from individuals sharing their professional views
  • 53 were from individuals responding on behalf of someone else
  • 47 were from organisations

Most organisations that responded were from the voluntary or third sector. We also received responses from organisations in the public and private sectors, as well as other professional bodies and organisations.

Due to the high number of respondents and the high number of qualitative questions in the consultation, it is taking longer than expected to analyse all the feedback.

We will publish the government response as soon as possible. The final delivery plan will be published in due course after the consultation response.


We're seeking your views on an interim delivery plan to improve the experiences and outcomes of people with myalgic encephalomyelitis/chronic fatigue syndrome.

This consultation ran from

Consultation description

The consultation asks for your views on specific chapters and actions on:

  • research
  • attitudes and education
  • living with ME/CFS
  • language used in relation to ME/CFS

We’ll use the responses to help us understand:

  • how well the plan identifies and addresses the issues most important to the ME/CFS community
  • where further action may be required


Published 9 August 2023
Last updated 21 May 2024 + show all updates
  1. Added a summary of responses to the consultation.

  2. Added a link to the easy read version of the consultation.

  3. Added the survey in PDF format, for users who prefer to print it, complete a paper version and post it to us.

  4. First published.