Letter from Mila, 19 and very seriously ill with ME/CFS

This letter was written by Mila Hermisson, with the help of her parents, Joachim and Sabine Hermisson. Mila is extremely sick and has been in her bed in total darkness for well over a year now. Her letter was initially published in German on this Kudoboard.

ME/CFS is a very serious disease that can be caused by viral infections. Long Covid can also lead to ME/CFS, which means that the number of patients is expected to rise significantly. Time to learn about ME/CFS!

Picture of Mila Hermisson who is severely ill with ME/CFS in her bed with a mask. Smaller picture of Mila outside with her cat, from before she became bedridden.

My name is Mila. I am 19 years old and very seriously ill with ME/CFS. I know that people who are not affected themselves can hardly imagine what that means. That is why I would like to tell you about it here.

Since November 2020, more than 10,000 hours, I have been confined to my bed in total darkness as you can see me in the picture. I can barely move my arms and legs, can’t eat by myself, can’t sit for more than a minute, and haven’t been able to speak for half a year. If I want to communicate something (like here), I can only do it on good days, when I can write letters on my bedsheet with my finger.

But worst of all is the uncertainty, the fright and the total loneliness. Even my cat is too exhausting and can no longer be with me. My parents and nurses are only in the room for the most necessary tasks. Everything has to go quickly and as calmly as possible to avoid stimulus overload and further crashes. Outside, life goes on. My twin sister and my friends have graduated from high school, have been abroad, are starting their studies. I am trapped here, hour after hour, day after day, month after month, in solitary confinement, buried alive.

I was 15 years old when I did not recover after a viral flu in the fall of 2018. In the small picture, I’m already sick, even if you can’t see it. In the early years, with great effort, I still managed to finish 10th and 11th grade. Today, I know that it was not good for my health, but I had so many plans. I was used to not losing optimism and going my way despite difficulties. Today, after my severe crash, my only hope is that the disease will finally be recognized, that there will be research and, as soon as possible, a therapy.

ME/CFS is a terrible disease that takes away my youth and can completely destroy a life. There are so many people affected, the stories on this page are just examples. And it can strike anyone. Given this, it’s hard to believe that there is almost no medical care, appalling ignorance and ignorance among many doctors, and far too little research.

Please: Build up care structures at long last! Make postviral diseases a focus of research and medical education and training! Take the experiences of patients seriously and act! Thank you.

Written by Mila Hermisson, Mödling, Austria, 2021.

4 things you can do to support people with ME/CFS

If reading about Mila and her disease makes you want to take action, here are some suggestions.

1. First, you can read about ME/CFS. This interview has a lot of info and also tells the story of an impressive young woman (Evelien van den Brink) who petitioned the EU to spend more on ME/CFS research.  .
   Here you can see part of the speech Evelien van den Brink gave in the EU parliament.
2. Also, have a look at this video about the problem that we are not spending nearly enough research dollars on this disease.
3. You can donate money for research here: https://solvecfs.org/ – especially in May and June of 2022 when all donations will be doubled!
4. Finally, please share this information so that more people will know about ME/CFS.