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#BringMillieHome - our statement

April 09, 2024


Action for M.E. is again saddened and concerned to see further reports relating to the concerning treatment of Millie and others with severe ME in hospitals and the lack of adherence to the NICE Guideline on ME/CFS.

We will continue to take action to ensure that people with severe ME receive the treatment and care that they require, including supporting individuals directly when requested, whilst reducing the stigma and misunderstanding that still surrounds the condition.

We are doing this by working closely with our network of Parliamentary Champions to raise awareness of ME within Parliament, ensuring that needs of people with ME are not forgotten. This includes calling for the full implementation of the National Delivery Plan on ME/CFS, when it is released.

In our position as Secretariat for the APPG on ME, we are also in collaboration with the ME Association and the 25% M.E. Group to support the work of the APPG and its upcoming focus on severe ME. The group will be reviewing the lack of specialist care available to people with severe ME and identifying opportunities to improve the availability of support.

We are also currently working collaboratively with other ME organisations to develop a ‘hospital pack - a self-advocacy pack for people with ME who are admitted to hospital - enabling them to effectively communicate their needs and healthcare requirements. We look forward to sharing this with you soon.


What is severe ME?

Severe ME affects around one in four people with ME. Many are often unable to leave the house or their bed, and accessing appropriate care and support can be very challenging.

In 2019, we heard from over 4,000 people with ME as part of our Big Survey and found that:

  • 95% of respondents with severe M.E. said they had stopped or reduced household tasks
  • 98% had stopped or reduced social contact
  • 66% require full or part-time care
  • 59% were no longer able to leave their home independently.

For more information, visit our webpage on severe ME, or view the results from our 2019 Big Survey.