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Advocacy for adults with M.E.

Action for M.E.’s free one-to-one advocacy service supports adults (age 18 and over) living with M.E. across the UK, including those most severely affected.

For a referral to this service, please contact our Crisis, Advocacy and Support Service. You can also download Action for M.E. resources that support self-advocacy:

  • This is M.E. in Word and PDF versions can be used by people with M.E./CFS to help their carer or other professional understand how M.E. impacts them, and the best ways to support them
  • Nothing about M.E. without me supports you to understand your rights, identify the issue and how it is affecting you, and set out your goals and the actions needed to achieve them.

Advocacy is "taking action to help people say what they want, secure their rights, represent their interests and obtain services they need. Advocates and advocacy providers work in partnership with the people they support and take their side. Advocacy promotes social inclusion, equality and social justice," as defined by the Advocacy Code of Practice.

A client we supported in November 2020 told us:

"None of the progress thus far would be possible without you, that's a fact! Every time you speak to someone on my behalf and then I have to speak to them, I always sense more empathy coming from them.”

This service is delivered through a combination of paid staff and volunteer advocates (see below). Our team provides issues-based advocacy support for adults with a diagnosis of M.E./CFS (including those with a diagnosis of PVFS) on a range of topics including (but not limited to) health, employment and housing. We aim to:

  • amplify the voices of people with M.E./CFS and empower them to stand up for their rights
  • improve the support that people with M.E./CFS receive from professionals, family, friends, services and other individuals and organisations relevant to their situation
  • ensure the client is leading the work and their needs, wishes and views are at the centre of all actions we take
  • provide targeted information about the services people with M.E./CFS can access as well as knowledge of their rights and entitlements to ensure our clients can make informed decisions.

While we are not able to offer advocacy for welfare benefits, mental health, or legal issues, we can signpost to services that do. Children and young people under the age of 18 should seek a referral to our Family Support and Advocacy instead.


Become a volunteer advocate

Our service is currently expanding in Scotland, where volunteer advocates will work from home, with full training and support provided by our experienced, friendly team.

Are you a good listener with an empathetic, professional and methodical approach? Do you have two hours a week to support vulnerable adults with M.E.? You’ll work online/by phone to meet and represent clients, agree an action plan, undertake research, contact professionals and more.

For more information and details on how to apply, please download our Volunteer Advocate application pack.