Consultation outcome

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

This consultation has concluded

Read the full outcome

Detail of outcome

This document summarises responses to the consultation on the interim delivery plan on ME/CFS. It is not intended to announce new government action. The vast majority of respondents agreed to the content and actions outlined in all chapters of the interim delivery plan. Respondents have submitted suggestions for further improvement to chapters and actions on research, attitudes and education, living with ME/CFS, and language used in relation to ME/CFS.

The consultation responses will inform the development of the final delivery plan on ME/CFS, which we aim to publish by the end of March 2025. The final delivery plan will be co-produced with stakeholders, through the ME/CFS Task and Finish Group, after careful consideration of the consultation responses, and the assessment of the feasibility and viability of the proposed actions.

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.

A summary of the responses received is included as part of ‘Improving the experiences of people with ME/CFS: consultation outcome’ above.


Original consultation

Summary

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
to

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

Documents

Updates to this page

Published 9 August 2023
Last updated 19 December 2024 + show all updates
  1. Added outcome to the consultation.

  2. Added a summary of responses to the consultation.

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

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

  5. First published.

Sign up for emails or print this page