Family Support

Support for parents of children with ME

Does your child’s school struggle to understand ME and the impact it has on your child? Do you want to know more about Individual Healthcare Plans (IHCPs), and how to work with your child’s school at implementing one? Or perhaps you would like your child’s GP to learn more about ME?

Our Family Support Service is here to help. This service is for parents/carers of children and young people (age 18 and under) with diagnosed or suspected ME, living in the UK. We support families by offering two support options: 

• Accessing education in a needs-appropriate way for your child
• Working with professionals such as your child’s GP or social services.

Accessing needs-appropriate education for your child

We can offer one 40-minute Education Support Session to:

• answer questions to help you better understand and advocate for your child’s education  
• support you with developing or revising an IHCP
• share resources and/or signposting.  

We may also be able to work with you to:

• write to your child’s school to help them understand ME and to better support your child with ME
• request and attend one meeting (up to 30 min) with your child’s school to answer their questions so they can bring in greater support for your child  

Working with professionals such as GPs or social services

We can offer one 40-minute Working with Professionals Support Session to:

• talk through options for your family surrounding healthcare or working with social services
• share resources and/or signposting.

WWe may also be able to work with you to:

• write to your child’s GP/medical team to share key information, resources and training about ME/CFS, so they can better understand ME
• write to your Children and Families Social Worker to share key information & resources about ME/CFS, so they can better understand ME.

To access our Family Support service

If you would like to take up both options (support with education and working with professionals), this will require two referrals. Please choose your priority and explain this to our Information and Support service team. We work this way to ensure that your support session is tailored to the immediate needs of your family, whilst also ensuring we can support as many families as possible with our limited resources.

Please note our Family Support service is not able to offer legal advice, support to complete Education, Health and Care plans (EHCPs, as opposed to IHCPs - see above), support or advice with welfare benefits, emotional support or counselling, or long-term case work. Instead, we will signpost you to organisations better placed to do this.

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

Other 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.

We 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.