One of Myfanwy’s greatest challenges is the widespread lack of understanding of severe ME/CFS among professional carers, which leaves her unable to access meaningful respite or support. In contrast, charities such as The ME Association are a vital lifeline, offering connection, reassurance, and the comfort of speaking to people who truly understand the realities faced by those living with severe ME/CFS and their carers.
Myfanwy, from Swansea, cares for her 28 year old son Tomos who has been bedbound with severe ME/CFS for the past three years, unable to talk or walk.
My life as a carer is shaped entirely around my son Tomos. He has severe ME/CFS and has been bedbound for two years. Caring for him is not a role I was trained for or ever expected, yet it now defines every aspect of my day, my routines, and my outlook on life.
Tomos is unable to walk or speak and communicates in very limited ways. As his carer, I have had to learn how to recognise and respond to these small signals. He uses a bell when he needs me, or he communicates by looking at objects. If he looks at his glass, he is asking for a drink; if he looks towards the door, he needs the bathroom. Occasionally, he can manage a short word or a facial expression, but there is no real conversation.Because of severe sensory sensitivity, Tomos cannot listen to music, watch television, or use a phone or computer. Even small sounds or light can cause significant distress. This means his days are very long, quiet, and often painfully boring. As his carer and his Mum, I try to think creatively about what little stimulation he can tolerate. One positive change has been moving him to a room with larger windows so he can see the trees and the changing seasons, offering him some connection to the outside world.
My caring responsibilities are 24/7. When Tomos needs to use the bathroom, I remove his bedding, help him roll on to his side and help him sit to the edge of the bed. I then take him to the bathroom on a wheelchair as he is unable to move independently.
He is now able to manage a soft diet, and I prepare all of his meals. I bring food to him on a tray and feed him every meal, always at his pace. He looks at the different food items on the tray to communicate which order he would like them in. Feeding alone can take up to an hour each time, and I remain fully focused throughout, watching for signs of exhaustion.
Washing is extremely tiring for Tomos, and his skin sensitivity makes touch painful as the sensation feels like electric shocks to him. I have learned to adapt, washing only what he can tolerate, sometimes just one arm. He cannot shave, so he now has a beard. Brushing his teeth must be broken into stages, with long rest periods in between. These tasks may seem small, but they require careful pacing and emotional resilience from both of us.
My day revolves around responding to Tomos’ needs – adjusting blankets to help regulate his temperature, bringing water because he cannot lift a glass, and answering the bell, sometimes many times an hour. There is no fixed routine; everything depends on his energy levels. The more unwell he is, the more support he needs. I have learned to be flexible and to accept constant change.
Accessing professional care support has been one of the most difficult parts of being a carer. Standard packages of care do not accommodate the needs for those with severe ME/CFS as the needs cannot be addressed at fixed times of the day due to the fluctuation of energy levels that person with ME/CFS has throughout the day. Also, carers don’t have the knowledge and understanding on how to deal with this condition. Some professional carers have questioned whether Tomos can’t speak or simply won’t, or have assumed he can “get better soon.” These interactions are deeply upsetting and highlight how unsupported carers can feel when professionals lack appropriate training.
In contrast, charities have provided real understanding and support. I am a member of The ME Association, and its resources and helpline have been invaluable. Speaking to someone who understands the realities of severe ME/CFS and caring reduces isolation and validates my experiences and my son’s experiences.
Being a carer has influenced me to change my expectations and my definition of a good life. I value small moments more, supportive friendships, and balance where possible. Above all, my role is about doing the best I can, every day, for the person I care for. It’s a role that requires compassion, resilience, and far greater support than it currently receives.
A Guide for Carers: Information and practical resources
Caring is vitally important but it can be quite isolating and, if you are new to caring, it can be hard knowing what to do. We understand the difficulties of being a carer and are here to help.
In order to better capture the current experiences of unpaid carers of people with severe and very severe ME/CFS, the 25% ME Group and the ME Association looked at focus groups in 2024 covering healthcare, social care and caring in general.
As we find when working with people with severe ME/CFS, the carers were keen to share their experiences to aid and inform others. The information they provided and experiences they kindly shared have been invaluable in the production of this booklet.
