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.”
