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
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
old life. Here I am getting another infusion because I am in such a bad general condition again.
So, what happened between the two pictures?
I developed Myalgic Encephalomyelitis / ”Chronic Fatigue Syndrome” after a mild virus infection. (hard to pronounce, even harder to
live with)
Why I tweeting this?
People with ME/CFS are often called "missing people" because as their symptoms get progressively worse, they disappear from public life, mostly unnoticed by others. They are so ill that they can no longer leave the house or bed.
People you knew only briefly usually don't know what happened to you at all. Their life goes on while yours is constantly on pause.
I usually don't want to deal with the disease, nor do I want to think or write about it, but in a way, I feel compelled to do at least something.
The reason for creating this account is that we need awareness. If we are not seen, we cannot be perceived and nothing will change. We have no other choice than to draw intention to ourselves and to fight for awareness.
This is my way of contributing to it.
On this account I will share how a normally harmless virus led me to develop ME/CFS, which changed my life in 2017 and destroyed it in 2019.
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.
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?
3/n One reason is the hormone adrenaline. It wasn't until years later that I realized the big role it plays in M.E.
We know adrenaline as the "fight or flight" hormone in situations of potential danger.
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.
This is the result of the healthy group without ME/CFS after exertion (what it should look)
Each dot, whether grey or red, represents one of 1154 metabolites.
They’re showing a significant change, upsurge in various chemicals. Their body adapts to the physical stress.
#MEAwarenessDay
(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.
(3/8) However, the level of suffering is similar for the most severely affected people with "#MECFS".
People know the feeling of #fatigue & therefore falsely draw the conclusion of being able to suspect what the illness feels like.
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.
Dabei werden auch im deutschen Gesundheitswesen jeden Tag(!) ca. 1 Mrd. € ausgegeben.
Auch auffallend ist, wohin die 11 M. € fließen. Während andere Länder größtenteils auf die Entwicklung von Medikamenten setzten, scheint Deutschland einen anderen Weg zu fahren.
"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 ⬇️
He ends the conversation with the following words:
"I'm actually a criminal biologist and that's really saying something when I'm left deeply impressed because I really see a lot of bad things in the world.. ⬇️
🧵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.
This hope was dashed when the door burst open and a nurse came in and literally shouted. "There he is, our special patient, we've heard a lot about you. You are always tired, right?"