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Advocacy for adults with M.E.

Action for M.E.’s free, independent one-to-one advocacy service supports adults (age 18 and over) living with a confirmed diagnosis M.E. across the UK, including those most severely affected. We also offer independent advocacy for children and young people with M.E., and support for their families.


How we can help

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.

Our advocacy service is delivered by paid staff and independent volunteer advocates (see below). Our team provides issues-based independent 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 your voice and empower you to stand up for your rights
  • improve the support you receive from professionals, family, friends, services and other relevant individuals and organisations
  • ensure you lead the work, with your needs, wishes and views at the centre of all actions we take
  • share tailored information about your rights, entitlements and services you can access, supporting you to make informed decisions.

How to make a self-referral

You must have a confirmed diagnosis of M.E./CFS to access our Advocacy service (other support is available if you don’t have a diagnosis).

Due to increasing demand, and to ensure our team is able to give the best possible support to the clients we are already working with, we currently have a waiting list of up to four weeks, and regularly review requests for advocacy based upon complexity and individual need.

Our advocacy service is independent from statutory organisations and as such our advocates are free from influence and conflicts of interest, when representing the individual or their views.

While we are not able to offer advocacy for welfare benefits, mental health, or legal issues, we can signpost to services that do.


Supporting self-advocacy

You can 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.

Become a volunteer advocate

Our service is currently expanding in Scotland, where independent 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 independent Volunteer Advocate application pack.