EN    DE

Mila and Sabine Hermisson

My name is Mila. I am 20 years old and very seri­ous­ly ill with ME/CFS. I know that peo­ple who are not affect­ed them­selves can hard­ly imag­ine that. That’s why I would like to tell you about it here.

Since Novem­ber 2020, more than 20,000 hours, I have been lying in my bed in total dark­ness. I can hard­ly move my arms and legs any­more, I can no longer eat alone, I can only sit for a minute at most and I haven’t spo­ken for two years. When I want to com­mu­ni­cate some­thing (like here), it can only be done on good days when I form let­ters with my fin­ger.

But the worst thing is the uncer­tain­ty, the fear and the total lone­li­ness. Even my cat is too tir­ing and can’t be with me any­more. My par­ents and car­er are only in the room for the most nec­es­sary tasks. Every­thing has to hap­pen quick­ly and as calm­ly as pos­si­ble to avoid sen­so­ry over­load and fur­ther crash­es.

Life goes on out­side. My twin sis­ter and my friends grad­u­at­ed from high school, went abroad and start­ed study­ing. 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 was unable to recov­er from a viral flu in the fall of 2018. In the first few years, with great effort, I man­aged to fin­ish the 10th and 11th grades. Now I know that was­n’t good for my health, but I had so many plans. I was used to not los­ing opti­mism and going my own way despite dif­fi­cul­ties. Today, after my seri­ous crash, I only have hope that the ill­ness will final­ly be rec­og­nized, that there will be research and ther­a­py as soon as pos­si­ble.

ME/CFS is a ter­ri­ble dis­ease that takes away my youth and can com­plete­ly destroy a life. There are many thou­sands of peo­ple affect­ed and any­one can get it. It’s hard to believe that there is almost no med­ical care, shock­ing lack of knowl­edge and igno­rance among many doc­tors and far too lit­tle research.

Please: I’ll try to hold on as best as I can, but I — we! — need help. We need care struc­tures that every sick per­son is enti­tled to. ME/CFS and oth­er post-viral ill­ness­es must become a focus of med­ical edu­ca­tion and train­ing. And we need bio­med­ical research and clin­i­cal stud­ies so that treat­ment options can final­ly be found. Please take the thou­sands of suf­fer­ing and the expe­ri­ences of those affect­ed seri­ous­ly and take action. Thank you.


Learn about ME/CFS
Video, 1:32 min

“The video was cre­at­ed for the upcom­ing vis­it of jour­nal­ist Nina Weber from Der Spiegel. Orig­i­nal­ly, Mila had planned to briefly com­mu­ni­cate direct­ly with Nina Weber. How­ev­er, as the vis­it was approach­ing, it became clear that this would be too stren­u­ous. So we decid­ed to make a short video instead and asked Mila: What would you like to say to the readers?

Her answer for non-Ger­man speak­ers: ‘LER SUR ME’ = ‘Learn about ME/CFS’ in a mix­ture of Ger­man and French for brevi­ty.
We are used to Mila com­mu­ni­cat­ing in Eng­lish. That she added French because SUR is short­er than ABOUT was a first-timer for us, which is why it took us ages to get it.”