My name is Charley, I am 18 and live in South Devon. I was diagnosed with ME/CFS by Dr Richard Tozer (Consultant Paediatrician, Torbay and South Devon NHS Foundation Trust) in October 2022, but seem to have had it for most of my life. Louise Humphrey (Clinical Specialist Children’s Physiotherapist, Children and Family Health Devon) provided specialist support. I have now been referred on to the Torbay and South Devon ME/CFS Adult Service.

Since 2022 I have had to drop out of college twice, completed an outreach course and have been unable to work. ME/CFS has affected every aspect of my life. I don’t go one day without thinking of ways systems can be improved to better accommodate the condition. I spend a lot of time engaging in patient forums for chronic illness and dysautonomia. I am incredibly passionate about advocating for disabilities within society, especially within healthcare and the education system. I was hoping to go into the ecology field or a biology focused job, before having to leave education. I am especially interested in genetics, and attempted biology, geography and environmental science A levels, and then an applied science B-tech. which I could not complete. During my outreach course I did complete a project on the mechanisms of evolution with heavy focus on genetics that also incorporated my love for art, which I am very proud of. I would love to go back into education, if my health improves, and get a level 3 qualification. But I am currently focusing on my health. I like painting, art and crochet and am thinking of using it for some income. I love roller-skating and being out in nature when my health allows that. Having the opportunity to be a part of BACME and the power to advocate for people like myself and change things means the world to me. If you are disabled with any long- term condition it can be isolating. Advocating for yourself can feel pointless when institutions that are supposed to help haven not been given education or resources to deal with it properly. So, to me, this is probably the most important thing I will ever do.