Emerge Australia acknowledge the strength and spirit of the estimated 25% of individuals living with severe and very severe symptoms. These individuals are often housebound or bedbound and the least visible in research, support, education, and awareness.
Anil van der Zee lives with severe ME and has given permission for Emerge Australia to share his lived experience.
Anil van der Zee May 1, 2023
Before this year, I was too ill for approximately five years, which prevented me from even thinking about anything related to dancing. A mixture of it being too far of a distance from the life I was “living,” and it being too painful. On top of that, I could not tolerate watching moving images on a screen, listening to music or sound, among other stimuli. Since I moved to a quieter place, I have been able to watch some short videos of dance, sports, and general life again, and that heightened my own awareness of the life that I unfortunately have lost. Who knows for how much longer?
I’ve been living isolated from the world since 2013, and from 2015, one visitor per year has not been uncommon. I’ve decided to film my current life with M.E. Not that my days are that exciting, but I often receive questions about how I get by, including how I eat, clean, go to the toilet, etc., from both my non-ME friends as well as individuals from the patient community and medical professionals. It might give a unique insight into what the disease forces you to do. I’ve tried not to hold back on any details, including the private ones, and show a step-by-step guide through my day. I hope you’ll enjoy watching it. There are English, Dutch, French, German and Spanish subtitles included. I advise you to turn them on to understand my English.
For more information, please visit Anil’s website https://anilvanderzee.com/
Caring for people with ME/CFS who are bedbound
Caring for a person who is bedbound with ME/CFS can be complex. Here is some information to help you provide specialist care.
We encourage you to read and understand Emerge Australia’s position statements on this topic:
Severe ME Awareness Day 2025
Severe ME Awareness Day, 8 August each year, is a day of awareness and visibility for the estimated 25% of people living with severe ME/CFS who are often housebound or bedbound.
To hear from our community as we raise awareness, click the button below.
Living with Severe ME/CFS by Ricky Buchanan
“Here are some ideas and hacks that may help. Every one of them may not work for you but I hope you can find one to help improve your day.”
– Ricky Buchanan