Family Support

Support for parents of children with ME

Our Family Support Service provides:

• support from people that understand what you and your child are going through
• key information about healthcare, education, and social care, along with a range of free resources that can help you self-advocate
• support in identifying and prioritising key issues of concern you want to address
• support in identifying your options and possible next steps
• light touch advocacy (this means one letter/meeting with professional bodies – like your child’s school/college or their GP surgery, predominantly to share useful resources & knowledge surrounding ME)
• information about Action for ME services available for your family
• signposting to helpful additional external services where appropriate.

Our Family Support service is not able to provide:

• Medical, legal or welfare benefits advice
• Ongoing advocacy support
• Counselling/specialist mental health support

How to make a self-referral

Please contact our Information and Support service to discuss a referral to our Family Support Officer, they can offer information, support, resources, and signposting.

Once our Information and Support Service has identified that our Family Support service might be able to help you, our Family Support Officer will contact you within two weeks.

Services for children and young people with ME

Our Young People's Community for young people with ME (aged up to and including 18 years) is free to join and includes a range of peer-support options including a safe and supportive online forum, our monthly e-magazine Cheers, and pen pal matching.

We can also set up severely affected members with buddies, who will send them short letters or emails with no expectations of a reply.

One of our community members told us:

"The forum has really helped me feel less isolated. Meeting other young people with ME/CFS and being able to make friends who can completely relate to me has been amazing! I especially enjoy the forum drop ins where people can talk in real time. The moderators on the forum are really friendly and so helpful if I ever have questions. It's lovely to have such a supportive community."

Our free Young People's Counselling Service accepts referrals from young people with ME age 11 to 18, or their parents, or any professionals working with them.

While our Young People's Advocacy service is now closed, we still offer up-to-date information and guidance on our website pages for young people and their parents/carers, along with free resources to share with professionals supporting children and adults with ME.