CFS - ME — Scope | Disability forum


Kellyh45 Member Posts: 1 Listener
My daughter is 11 and suffers from CFS does anyone else have experience in this area ???? Having a nightmare with school considering homeschooling 


  • pink_princess
    pink_princess Member Posts: 174 Pioneering
    edited March 2019

    Welcome to the community ?

    im sure other community members will be able to help with this it meant be worth looking at to  charities that may be able to help and offer advice hope this helps ?

    Action for ME

    ME Association

  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,674 Disability Gamechanger
    @KellyParentAdvisor I wondered if you had any thoughts about homeschooling and facing problems with schools?

    Raiise is an organisation inspired by the negative experiences that young people face while studying and living with invisible illnesses. I wonder if they could be any support to you?

    Also have you spoke to your Local Education Authority?
    Senior online community officer
  • [Deleted User]
    [Deleted User] Posts: 0 Courageous
    Hi @Kellyh45

    Sorry to hear you're experiencing some issues with school, have you contacted you local Parent Partnership Service (PPS) or Local Offer to see if there's any support they can offer?

    I also wondered if this may be of interest to you. Scope have recently launched a new service called Navigate. Navigate provides a six week programme of online and telephone support to parents who have a child going through diagnosis or have a child who has recently been diagnosed with a disability (within 12 months). The aim is to provide parents of a child with a disability with emotional and practical support and help them navigate these early stages. It also gives parents a chance to talk through things in a safe space. Education is one of things in yours and your child's life that we can discuss.

    If you think this may be something that could benefit you please visit or call 0808 801 0510

    Best Wishes x
  • KellyParentAdvisor
    KellyParentAdvisor Member Posts: 32 Courageous
    Hi @Kellyh45, I'm sorry to hear school aren't being supportive. What have you tried so far? 

    Home education is certainly an option and, sadly, one that many families of children with additional needs feel they have to take. If your child is really struggling with the school day, being able to help her learn in a way she will respond to WHEN she can respond best is one of the huge benefits of home ed. 

    There are no rules (as long as there's no EHCP involved) and you can pretty much do what you want, how you want - although this can seem pretty daunting too! 

    There are lots of home ed websites and groups on Facebook if you want to ask more targeted questions to get a feel for if you think it will suit your family. This site is one of the most information-packed and a good place to start.

    If you decide home ed is not for you, how do you feel school could better support your child?