Your child and M.E.

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Support for parents

Support for parents

If your child has been diagnosed with M.E. you may be feeling upset, worried, stressed, or even angry. Although there is no cure for M.E. the outlook for young people with the illness is hopeful, and most children will get better. In the meantime, it is important to understand the impact the illness can have on your child, their friends and other family members.

Use the menu to find out more about making the most of your relationship with your child's doctor, managing your child's medication, and supporting your child to access the education to which they are entitled. We also have a resource you can share with Children and Families Social Workers to help them understand how M.E. impacts your child, and what appropriate care looks like.

If you need more information or support at any point, or just want to talk to someone who understands, please don't hesitate to contact us.

We offer information, support and advocacy for you and your child with M.E. We have supported lots of families with accessing healthcare, education and social services, and challenging unhelpful attitudes about M.E. We understand the challenges that come with living with M.E., and we will do what we can to help and support you. You or anyone in your family can call our Information, Support and Advocacy Service on 0117 927 9551 or send us an email.

We are also able to offer Healthcare Services following our merger with the ME Trust in January 2022. Our clinical team includes a doctor and physiotherapists working with young people aged 13 and above, offering individually tailored whole-person care. As a charity, we charge fees for our Healthcare Services only to cover our costs, and a bursary for up to 50% of fees may be available, depending on your circumstances.

For young people aged up to and including 18, being a member of our Young People's Community - which is free! - is a great way for to connect with other young people living with M.E. Plus they can access peer-support services including a safe, secure forum, our online magazine written for and by young people with M.E., a fully customisable penpal service, hand-written birthday and Christmas cards, and a buddy system that allows those too severely affected to receive letters without the expectation of replying.

Our Parent and Carer Forum is currently on hold. We want to take time to ensure we’re offering parents the right sort of support to meet their needs, on top of the advocacy and information we already giving. For this reason, we are putting the forum on hold until we are able to engage with parents to find out how we can best facilitate peer-support.

Looking after yourself

In order to look after someone well, you need to look after yourself. Your needs are just as important as the person you are caring for, but this can be easy to forget, especially when it's your child that is unwell.

It is in fact easier to cope with the pressures of caring if you are also caring for yourself. By maintaining both your emotional and physical health, you will be able to care to the best of your ability. Consider letting your GP know you are a carer as they can often be a valuable source of information about medical and community services and support.

Social services

In June 2017, our survey into the experiences of families affected by M.E. found that some parents were being investigated by social services because of accusations made against them. One in five parents said they had had a safeguarding/child protection referral made against them because of their child's illness.

If you find yourself in a similar situation, help and support is available. You can refer to our factsheet about the role of social workers, and child protection proceedings, and contact us for expert information and support.