Today is ME/CFS Awareness Day.
I am a very severe ME/CFS patient. I have not left my mattress in around 9 years, and I have been sick much longer.
I cannot have visitors. I cannot watch TV. I can speak only very little with my caregivers. I can only read a few pages per day, sometimes less. I live mostly in darkness, in constant pain and physical discomfort.
There has not been a single day in the last 10 years that was not “ME/CFS Awareness Day” for me.
For millions of patients, this disease is not a campaign, a hashtag, or a yearly reminder. It is total life destruction, every single day.
What we need is not symbolic awareness alone. We need serious research, clinical infrastructure, political recognition, urgency, and your help.