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.
The disturbed immune regulation also leads to a sustained T-cell activation and a reduced function of natural killer cells.
Who is prone to develop ME/CFS is also still unclear. There are probably two factors:
-An infection at the time of high physical activity or stress load
-familial disposition (heredity)
0.2-0.4% of the world's population is affected. Approx. 300k in Germany, 4m. in the US and 17m. people worldwide.
The main symptom is the so-called Post Exertional Malaise (PEM). This describes the worsening of the symptoms after physical and/or
cognitive effort.
Just because it's not a progressive, fatal disease doesn't mean people don't die from it. ME/CFS, especially in combination with being bedridden, can lead to secondary diseases. That’s why the number of deaths from cancer and heart failure is significantly
increased in ME/CFS patients.
Life expectancy is shortened by 20 years for ME/CFS patients with cancer and 25 years for those with heart failure.
Most common causes of death in ME/CFS patients are:
20,1%: Heart failure
20,1%: Suicide
19,4%: Cancer
11,1%: Complications from ME/CFS (e.g. infections, renal failure, respiratory failure)
Because of the severity of the disease, prejudice, disbelief and the lack of help for those affected, the suicide rate is about 7 times higher than that of other people.
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?"