Discover and read the best of Twitter Threads about #MECFSAwareness
Most recents (6)
Zum #MECFSAwarenessDay wäre es auch wichtig zu berücksichtigen, dass viele MECFSler Desinformation verbreiten und die Long COVID Bubble mit reingezogenen haben. 1/6 
Mir hat eine MECFS Querdenker Julia erzählt dass viele Kinder durch die Impfung gestorben wären und sie ihr MECFS durch die Impfung hätte. Sie hat Querdenkerquellen als Beweis geliefert. 2/6
Neuer Antrag der @cducsubt: #MECFS-Betroffenen sowie deren Angehörigen helfen – Für eine bessere Gesundheits- sowie Therapieversorgung, Aufklärung und Anerkennung. Der Antrag wird am 19.01. um 16:45 Uhr im #Bundestag in einer 40-min. Debatte beraten, inkl. Liveübertragung.
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@cducsubt In der Pressemeldung des Bundestags heißt es: "Die Abgeordneten fordern konkret, den Aufbau der im Koalitionsvertrag genannten Kompetenzzentren und interdisziplinären Ambulanzen für #MECFS unverzüglich finanziell und strukturell zu fördern. Auch sollte Betroffenen der...
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@cducsubt ...Zugang zu Gesundheits- und Sozialsystemen erleichtert werden. Rehabilitationsangebote für Angehörige müssten gefördert werden, um deren physische und psychische Belastung zu reduzieren und die schulische oder berufliche Teilhabe auch für schwer Erkrankte zu ermöglichen." (3/4)
(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.
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.
Today I know that I experienced my first PEM back then.
(3/15) What is PEM?
PEM stands for Post External Malaise and refers to the worsening of symptoms after minor physical and/or mental exertion.
PEM occurs immediately after a performed activity or with a latency of approx. 12 to 48 hours thereafter and may persist for several
PEM stands for Post External Malaise and refers to the worsening of symptoms after minor physical and/or mental exertion.
PEM occurs immediately after a performed activity or with a latency of approx. 12 to 48 hours thereafter and may persist for several
🧵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.
"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:
3/9 "Did you have a bad experience in your childhood?"
- "No"
Did you lose a close family member?"
- "No"
Are your parents divorced?
- “No”
He was desperately trying to find something in my past and I was getting more and more confused.
- "No"
Did you lose a close family member?"
- "No"
Are your parents divorced?
- “No”
He was desperately trying to find something in my past and I was getting more and more confused.
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
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.
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
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
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
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
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
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
