Family Support

“Thank you very much for your email, it certainly seemed to help with the social care team.”

Family Support service client 

Do you care for a young person aged 18 or under in the UK with diagnosed or suspected ME/CFS? 

We are here to help. Our Information and Support service can help you think through problems, give you information on your child’s rights and direct you to sources of specialist advice. 

You may also benefit from more tailored support. Does your child's school need a better understanding of ME/CFS and how it affects their education? Would their doctor or family social worker benefit from more information and official guidelines on how to support someone with ME/CFS? 

Our Family Support Service can offer more bespoke support. We can: 

• Write a personalised support letter to your child's school, healthcare professional, or social care team, explaining ME/CFS, outlining its impact on your child, recommending reasonable adjustments and holistic support strategies, and signposting relevant information and resources. At the same time, we can email information, resources and signposting for you and your family. 

• Offer a 30-minute information-sharing and Q&A session with your child's school, healthcare professional, or social care team to help them better understand ME/CFS and your child's needs. 

Please note this is not an urgent service, and there may be a short wait depending on our capacity.  

If you need support that falls outside this service, please contact our Information and Support service. 

Before accessing the Family Support service 

Before you start the form, please read the resources relevant to your child’s situation. This should make the form quicker and easier to complete and help you share the information we need to create a strong, tailored support letter for your child: 

• Education Support (10 to 15-minute read) and Guide for Educators (20-minute read)  

• Support from Your GP (5 to 10-minute read)  

• Social Care Support (15-minute read)  

If you have read the resources above and need additional support, please complete the relevant form below. If you require support in more than one area, please submit a separate form for each request. 

As part of the form, we will ask questions about your child's circumstances, the support currently in place, and any challenges you are experiencing. This helps us understand how best to support your family. 

Complete the relevant form to access the service

After completing the forms, you will receive a confirmation email from our Family Services Coordinator within five working days, explaining next steps.  

• Education Support Form 

• Social Care Support Form 

• Healthcare Support Form 

If you would prefer to respond to the questions by post or email, please let us know. You can contact us by email or call 0117 9227 9551 and choose option one. 

Family Support webinars 

Our Family Support webinars are designed to help parents, carers and families navigate some of the challenges that can come with living with ME/CFS. We cover topics that families have told us matter most, including education, wellbeing and practical support. 

We regularly add new webinars, so please check back to see what's coming up. 

If you've missed one of our previous sessions, don't worry. You can still register for our past webinars and receive access to the recording to watch at a time that suits you. 

Click to register or watch on demand:

• Working with Your Child's School and IHCPs (August 2026). This covers preparing for meetings with your child's school, understanding Individual Healthcare Plans (IHCPs); exploring adaptations, provisions and reasonable adjustments; key educational milestones and what to expect.
  Passcode: YY&0$HJ$ 

• Next webinar: details will be shared here soon.  

Parent peer support groups 

Our peer support groups offer a welcoming online space for parents and carers of children and young people with diagnosed or suspected ME/CFS, to connect with others who understand the challenges you may be facing.  

• 60-minute online peer support gatherings held every six weeks. 

• A chance to share experiences, exchange ideas, and connect with other parents and carers. 

• Small groups of up to eight participants, ensuring everyone has the opportunity to be heard. 

• Each session includes a suggested discussion topic, chosen by group members. 

• A group agreement helps create a safe, supportive, and respectful environment for everyone. 

Whether you're looking to listen, share your experiences, or connect with others on a similar journey, our peer support groups offer a welcoming and understanding space. 

We will share the date of the next support group soon. Please come back to this page or follow us on socials for updates.