Support for young people with M.E. and their parents
We are here for children and young people with M.E., and their parents and family members. Our goal is to empower you and your family to face the challenges that living with illness presents. Scroll down the page for information about:
- Family Support for parents and family members
- Independent advocacy for children and young people with M.E.
- Peer-support services for children and young people with M.E., including a friendly online forum and workshops funded by BBC Children in Need
Family Support for parents
We are here for parents or family members of a child or young person with the symptoms of M.E., CFS or post-viral fatigue syndrome; they don't need to have a confirmed diagnosis. We can:
- share key information and support, along with a range of free resources
- help identify and prioritise key areas of concern you want to address
- offer emotional support via active, empathic listening, and support self-advocacy
- signpost to our Children and Young People’s Advocacy Officer (see below).
While our Family Support service does not offer medical, legal or welfare benefits advice, ongoing advocacy support, or counselling/specialist mental health support, we can signpost to agencies that do.
June 2022 update: We are currently pausing Family Support referrals, while we recruit to this service. In the meantime, we continue to support parents and other family members via our Information and Support team.
Sharon, whose son has M.E., told us:
“You have been the light that has helped us navigate these most challenging of months, providing bridges between agencies and disciplines, with your experience, expertise and calm, unwavering support.”
Independent advocacy for children and young people
If you are 18 or under, our dedicated Young People's Advocacy Officer can work with you to ensure your voice is heard in situations that affect you. We will be led by you to:
- secure access to services that meet your needs; and have your rights respected
- support you to develop self-advocacy skills
- improve our services by finding out was helpful, and what we need to do more of, when we work with you.
We will work at your pace, and can communicate in a way that suits you. This is a free service, and open to anyone aged 18 or under living anywhere in the UK. If you're under 16 we'll need to get your parent's permission to work with you.
How to make a self-referral
- Full details can be found in our Children and Young People's Advocacy information pack.
- After reading the pack, please complete and return the Children and Young People's Advocacy self-referral form.
- If you need more information or want to talk about whether advocacy is right for you, or need support completing the self-referral form, please contact our Information and Support service.
Our service is not commissioned by statutory organisations and as such our advocates are free from influence and conflicts of interest, when representing the individual or their views. We work within a high level of confidentiality and respect for children and young people’s privacy but within the boundaries of appropriate safeguarding procedures. One young person we worked with told us:
“I am very pleased Action for M.E. is there. They have helped me and my Mum with things that no one else has. [Advocacy Officer] Jacqueline is very funny and supportive and understands M.E."
Mental health support
While our Advocacy service does not offer medical, legal or welfare benefits advice, or counselling/specialist mental health support, we can signpost to agencies that do. If you’re struggling with your feelings, you are not alone. Here are some links to support you can reach out to:
- Young Minds provides free, 24/7 text support for young people across the UK experiencing a mental health crisis. All texts are answered by trained volunteers, with support from experienced clinical supervisors. Text YM to 85258.
- If you’re under 19, you can confidentially contact Childline about any problem big or small. Call 0800 1111 or sign up (real name or email address not needed) to use their free 1-2-1 counsellor chat or email support service.
Peer-support for children and young people
We also offer:
- a safe, supportive community for young people 18 and under, which is free to join and includes a range of peer-support options including a friendly online forum, pen pals, and buddies for young people who are severely affected.
- up-to-date information and guidance on our website pages for young people and their parents/carers, along with free resources you can share with professionals supporting children and adults with M.E.
We are grateful to the Masonic Charitable Foundation for supporting our work with children and young people with M.E., and their parents and families.