By David Tuller, DrPH
It is May 12th–ME International Awareness Day. (Or ME/CFS International Awareness Day if you’re the US Centers for Disease Control and Prevention. In Washington, DC, #MEAction and Body Politic have organized a protest and press conference “to demand bold, urgent governmental action for the millions of people living with myalgic encephalomyelitis (ME), Long COVID, and other infection-associated complex chronic diseases.”
For my part, I’d like to post a video from my friend Anil van der Zee–a Dutch patient who has spent years in virtual isolation. I have visited with him on several occasions over the last seven years, but only for a few minutes at a time. Here’s what he has to say about the video:
“Since 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 get questions about how I get by. How do I eat, clean, go to the toilet, etc. Both from my non-ME friends, people 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.”
3 thoughts on “Trial By Error: A Day in the Life of Anil van der Zee”
Many thanks to Anil for managing, in just 20 minutes, to convey so much. So much that is hidden from the world, as people with severe ME carve out an isolated, minimalist existence.
Thank you also, Anil, for bringing meaning to your own life and that of others through your ongoing advocacy.
Thanks for doing this, Anil – it must have taken a huge amount out of you, not “just” physically, but emotionally, too. I agree, it’s important that people see the reality of what ME does to people, to show up the nonsense about how we’re somehow doing this to ourselves out of choice or intransigence. Who would choose a life like ours?
Your friendship with Grigor (and Grigor himself!) is very sweet, and I like your sweatshirt 🙂
Where is the humanity in saying that ME patients like Anil need CBT or ACT or GET? Here I see someone with dignity and composure and intelligence and talent who is doing their utmost to make the best of the life they have. What is CBT ever going to add to what this man already displays? And could it be any more insulting than to recommend GET to a patient who I imagine knows far more than most about how well the body can perform when it is healthy? Those who have pushed these ‘treatments’ for patients with ME should hang their heads in shame. T