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. 

This week I learned about ME/CFS

This week I learned about ME/CFS when I sent a 2-line email to my PhD advisor Joachim Hermisson. Me: “Hope you & your family are well. Could you send me your recent Nature Reviews Genetics paper?” His reply came quick: “Sure, paper attached. We are not well. One of my daughters is very sick.”

In a few more back and forth emails, I learned that his daughter has very severe ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome). She is so sick that she is in bed in a dark room 24hours a day. She is a teenager.

Let me repeat that. This 18-year old girl is bedridden in a dark room for 24 hours a day.

When I last saw Joachim’s family in 2017 in Berkeley, she and her twin sister were healthy teenagers adjusting to school abroad.

It is thought that 20 million people worldwide have ME/CFS. It’s a chronic disease and there is no cure. Symptoms include extreme fatigue, post-exertional malaise (which means doing anything makes you more tired), severe headaches and light and sound sensitivity.

It’s thought that
worldwide
20 million people have ME/CFS

Okay, you may think. Many diseases are bad. It’s always horrible when a young person gets so sick. But hey, we can’t do much about it.

But here’s the thing. According to CDC, this disease, while not exactly rare (probably 2 million people in the US and 2 million in Europe have it), is not even taught in most medical schools. https://www.cdc.gov/me-cfs/about/index.html

Also, ME/CFS gets almost no funding! This chart shows that almost all diseases get more research money than ME/CFS, despite its enormous impact in terms of lost “disability-adjusted life years”.

https://twitter.com/brianvastag/status/667879507571806208

The funding situation for ME/CFS in Europe is probably worse, but nobody has the numbers.

If researchers have no money to work on this disease, no wonder that there is no diagnostic test and no FDA-approved medication.

Plus, ME/CFS is likely to get much more common with every COVID-19 wave because it is often triggered by a viral infection. Here is an article about the link between Covid-19 and ME/CFS.

https://www.washingtonpost.com/health/could-covid-19-cause-long-term-chronic-fatigue-and-illness-in-some-patients/2020/05/29/bcd5edb2-a02c-11ea-b5c9-570a91917d8d_story.html

After reading just a few things about ME/CFS I could see how difficult it must be to live with (or see a loved one live with) such a crippling disease that’s not even taken seriously by medical schools or funding agencies. So I asked Joachim “Is there anything I can do?” His answer was “Being informed is most important.” Later he added: “People can donate money or sign the EU petition”. Here’s a short list of action items:

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

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. https://europeanmecoalition.com/wp-content/uploads/2020/11/Interview-Vriendin-English-translation-October-2020.pdf
   
   Here you can see or read the speech Evelien van den Brink gave in the EU parliament https://europeanmecoalition.com/speech/ (her speech starts at 2’10’’).
   
2. Second, if you are an EU citizen, you can sign this petition to ask the EU to spend more money on ME/CFS research. https://www.europarl.europa.eu/petitions/en/petition/content/0204%252F2019/html/Petition-No-0204%252F2019-by-Evelien-Van-Den-Brink-%2528Dutch%2529-on-a-request-for-funding-for-biomedical-research-on-Myalgic-Encephalomyelitis
   
3. Third, you can donate money for research here: https://solvecfs.org/about-the-disease/ or here https://www.omf.ngo/what-is-mecfs/.
   
4. Finally, please share this information so that more people will know about ME/CFS. 

Thanks for reading this thread / blogpost!

Note: I am sharing this story with Joachim’s permission.