Dee’s story is not only about her daughter’s illness, it is a moving testimony of what it’s like to care for a loved one with ME. The feeling of powerlessness knowing there is no cure, whilst maintaining strength and hope for them.

Dee began caring for her daughter when she first fell ill at just 11 years old, and in time the illness would force her to leave school for the confines of her bedroom. After months of uncertainty it was a hospital appointment that finally provided the answer, Myalgic Encephalomyelitis. Dee and her daughter now had a diagnosis, but then followed the devastating revelation that there is no cure.

Twenty years on Dee’s remains a loving carer for her daughter’s needs. Her daughter’s hypersensitivity to light and sound means that she sleeps throughout the day and is awake at night. Therefore, Dee has to prepare her breakfast in the evening, and then wake early to make next meal at around 4am. Two lives turned upside down by ME.

As the years have passed by Dee has started to worry about the future. Who will take care of her daughter if nothing changes? Who will undertake the research needed to find a cure? And will there ever be a clinic here in Wales?

Together we can bring about change for carers like Dee, join her and #SpeakforME. If you’d like to read the transcript of the interview it is available now on the blog.