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27y. | ME/CFS changed my life in 2017 and destroyed it in 2019.
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Sep 30, 2023 19 tweets 3 min read
1/n Thread about #MECFS and #adrenaline

This is the last picture of me with mild ME/CFS.
Naive and ignorant about what the illness means, I started a NYC study trip in 2019 although I was already not feeling well in the weeks before. Image 2/n So it was even more surprising that I managed to get through the first two days without any problems.
Then things changed: I had a crash that got me to the severe stage within a few weeks. But why so suddenly? How could I walk around NYC all day in the first two days?
Jun 26, 2023 7 tweets 2 min read
For me, this is still the most interesting #MECFS study of all.
Explanation from one layman to another:

While and after we exercise, our bodies release lipids, amino acids and other chemicals (called metabolites) to help the body adapt and recover. ⬇️

mdpi.com/1422-0067/24/4… These metabolites are then excreted through the urine where they can be measured.

In the study, two groups exercised on a bike. People with #ME and a healthy control group. Urine was analysed before and after exercise.
May 12, 2023 8 tweets 3 min read
(1/8) If someone had told a few years ago that I will suffer from an illness called "chronic fatigue syndrome", I would never have estimated its severity. I might have thought of people getting tired a little faster.
What do you think of when you hear "fatigue"? (2/8) The feeling after a long day at work or after exercising, right? #ME(CFS) couldn't be further away from this feeling. The first time you heard "CFS", did you think of a serious illness like end-stage cancer or AIDS? Probably not.
Aug 27, 2022 22 tweets 8 min read
Langer Thread zum Umgang der Bundesregierung mit #LongCovid:

Der Bund zahlte stand heute ca. 53 Mrd. € für die Bekämpfung der #CoronaPandemie.
Für die Erforschung von Long- und Post Covid wurden bislang hingegen nur 11 M. € investiert. Mit anderen Worten: Das in die Erforschung von LC geflossene Geld macht nur 0,02% von dem aus, was der Bund insgesamt für Corona ausgab.
Zum Vergleich: Die USA investierte bislang 1 Mrd. € und Großbritannien 100 M. € zur Erforschung von LC.
Aug 25, 2022 4 tweets 2 min read
"What you hear there is one of the most impressive and courageous things I have ever heard."

This is what Dr. Mark Benecke, a criminal biologist known from German TV, writes in the video description about talking to #MECFS sufferers.
Unfortunately only available in German ⬇️
Aug 21, 2022 16 tweets 3 min read
🧵about my second hospital stay with #ME and the way some doctors treat #MECFS patients.  
It’s 2020 and I’m in the severe stage now. This means that I am bedridden and had to be taken to hospital by ambulance and stretcher. Before my stay, my family doctor informed the hospital about the circumstances and special conditions, such as extreme sensitivity to noise and light. Naive as I was, I really thought that a little attention would be paid to that.
Apr 13, 2022 15 tweets 6 min read
(1/15) PEM explained
When I woke up the day after jogging, I felt terrible, although terrible is probably an understatement. It is a feeling that healthy people can hardly imagine. It feels like having a flu, a hangover and a jetlag at the same time. (2/15) At that time I wasn’t able to make the connection between yesterday's jogging and the terrible feeling the next morning.
Today I know that I experienced my first PEM back then.
Apr 5, 2022 9 tweets 5 min read
🧵1/9 Psychologist
"We think your symptoms are psychological." I couldn't get this sentence out of my head. How could my symptoms be psychological? Bulls**.

But what if he was right? I couldn't get rid of the thought & followed the doctors advice & went to see a psychologist. 2/9 It was an old man, around 75. After I have told him about everything, he asked me what bothered me. "My symptoms" I said. “But there has to be something that burdens you mentally” he answered. The following conversation went something like this:
Feb 28, 2022 9 tweets 5 min read
What is ME/CFS?
In short, in its severe stage, it is the worst non-fatal physical disease you can have.

ME/CFS is a severe, physical and complex disease, usually caused by a viral infection. Because so little research has been done on it, scientists are not sure about the underlying cause yet.
An incorrect response of the immune system to an infection is likely which then, as in a chain reaction, leads to a dysregulation of the immune system, the nervous system, the endocrine system, the energy metabolic system and the cardiovascular system.
Feb 20, 2022 8 tweets 6 min read
On the top picture, you see me.  
Back then I enjoyed life and did not worry about the future. I had just finished school and couldn't wait to see what life had in store for me. I was a very sociable person and loved having people around me. I lived a very active life and there Image was hardly any party I missed. Photography and travelling were my great passions. 
On the picture below, you see M.E.  
A severe and utterly frightening disease that hardly any research has been done on. This disease is to blame for the fact that I have lost everything about my