*names have been changed
“When my daughter Mia’s health collapsed in August 2024, our lives changed almost overnight.”
Hattie’s daughter was 15 years old when she became severely affected by ME. She had previously had glandular fever followed by a short period of being a little unwell. “Suddenly she went from being a pretty active teenager to completely housebound, in a wheelchair, unable to write or do even the smallest daily things for herself. We were suddenly living in crisis, with no real medical guidance and no idea how to manage her education or care.”
Hattie reached out to our Information & Support service for help navigating her daughter’s illness, including how to speak with Mia’s school to ensure Mia received the support she needed.
“Finding Action for ME was like taking a deep breath after weeks of panic. From my first contact, they provided both compassion and practical help, in particular offering detailed, personal guidance, not just generic advice, that helped us step by step. They explained about navigating the EHCP process, how to work with schools to create an Individual Health Care Plan - really practical steps in navigating the bureaucracy involved in getting my daughter the right help.”
Our friendly Information & Support team were also able to provide details of other Action for ME services that could help Mia, including our services to reduce the isolation 97% of young people with ME experience.
“They also connected us to a wider community. My daughter joined the Breaking Isolation workshops and attended a brilliant session with Dr. Robin Kerr, whose comments about Mast Cell Activation Syndrome were actually a turning point for us.”
Finding help for a child with ME can be incredibly difficult for parents. Our services offer a listening ear but also help parents break issues down so they feel less overwhelming, and help them prioritise next steps and what questions to ask a professional to help their child.
“Before finding Action for ME, I was using a scattergun approach, desperately asking everyone and getting conflicting advice from doctors, friends, and online forums. Speaking to real experts who understood the illness, and who could calmly guide us through both the emotional and practical challenges, was so valuable. It gave me confidence, clarity, and hope at a time when everything felt pretty frightening and uncertain.”
Our services for families and young people rely heavily on donations from the ME community.
“Please consider donating to Action for ME. When your child suddenly becomes seriously ill, it can feel like the world has fallen away beneath you. Action for ME are the people who step into that gap. They don’t just offer information, they offer understanding, compassion, and a way forward when you have no idea where to turn.”
