Long-Covid gets a face: Stories are shared on Instagram by 15,000 people who have been unable to work since their corona disease. We spoke to the teacher Ricarda Piepenhagen, who launched the Instagram campaign @nichtgenesen and complains that the government is not investing enough money in research.
FOCUS Online: You are the brains behind the Instagram campaign @nichtgenesen, for which hundreds of long-Covid patients from all over Germany show up with a photo. Tell me how it came about. Ricarda Piepenhagen: I myself fell ill with long-Covid last autumn, have cardiovascular disorders, neurological problems, including this tremor like in Parkinson’s and unsteady gait. I became aware of a Facebook group through a newspaper report. 15,000 people! I noticed that the exchange of those affected took place exclusively internally. In fact, many become experts over time and the group also benefits from the numerous doctors involved there. But what is completely missing is the external impact, a signal to politicians. Long-Covid must finally be researched! We have to be taken seriously.
In recent months, however, there have been numerous reports about those affected and their medical histories. Piepenhagen: That is exactly the point. For the moment, the fate of the mother, who can no longer look after her children, gets under her skin. But what does this change? We have to show how many young people are in bed, that was my thought. People who still have their whole lives ahead of them. When they become visible in large numbers, it may finally become clear what kind of economic damage the whole thing means. What could possibly happen to the social systems. I’ll speak for myself now: I’m a coordinating teacher at a local school for German as a second language. At the moment there is no end for me to do because of the Ukrainian refugees. But I am unable to work since November 17, 2021. As have thousands of others. There is a simple reason why we are so little heard: people who are lying in bed cannot go to the demonstration. Hence the Instagram action. An info flyer for the campaign says: “Long-Covid gets a face”. Piepenhagen: Yes, those affected give their name, the job they used to have and would like to do again, and they say how long they have been unable to work. We have also written the respective federal state. When we started a few weeks ago, those affected immediately contacted us from all over the world. A lot of sick people. I didn’t expect there to be so many so quickly. Within three weeks we had 2000 followers. There are now almost 4000. 500 pictures have been uploaded. People who want out of anonymity and are screaming for help. There are more every day. There is the master butcher, the carpenter, there are engineers, doctors, teachers like me. It can happen to anyone, including children. The accumulation among medical staff is particularly striking. So the people who were applauded at the time. Now they are left behind.
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Piepenhagen: Long-Covid must be researched! You need money for that. So far, around 10 million euros have been made available by the federal government for research into Long-Covid in Germany. That’s a joke, especially when you consider that about 10 percent of those infected with Corona develop long-Covid. That’s around 2.8 million people in Germany alone. What hardly anyone among us affected understands: Hundreds of millions of euros were made available in a very short time for research into the acute disease – keyword vaccine development. Why is the acute phase of the disease being researched and the post-Covid phase left in the drawer? It’s not like you have to start from scratch. More than a year ago, there were first successful attempts at healing at the University Hospital in Erlangen. The successes went viral. Many media have reported about it. No wonder: people got their old lives back. I am in contact with some. What kind of therapy are we talking about? Piepenhagen: About BC007, the great hope of many long-Covid sufferers. Many would give their right foot to test the drug. I myself would take BC007 immediately. The possible effect of Long-Covid was discovered by accident, BC007 is originally a heart drug. It was already in the so-called Phase II study, but the study then had to be interrupted due to Corona. So we’re not talking about a purely experimental drug here. We’re talking about something that’s already on the shelf, so to speak, that could potentially save millions of people. People who have to constantly hear at the moment: This is all just psychological.
Karl Lauterbach recently made himself very clear. Long-Covid is not a psychosomatic but an organic disease.
Piepenhagen: He’s right about that! The ignorance in parts of the medical profession is stunned. Even specialized rehabilitation centers and post-Covid outpatient clinics often only have an insufficient understanding of the clinical picture. I know countless stories from those affected whose condition has worsened as a result of the rehabilitation measures. Keyword stress intolerance: Those affected experience a drastic deterioration in their state of health after physical, cognitive or emotional stress. One who shared her story with us stutters and has been unable to lift a spoon since being chased down the hospital corridor in ankle weight cuffs. According to the motto: if you just try hard enough and want to, you’ll be fine.
Recently, the term “autoantibodies” has often been heard in connection with Long-Covid.
Piepenhagen : From the looks of it, Long-Covid is an immunological disease in which the so-called autoantibodies you mentioned attack your own healthy organ structures: This can lead to reduced blood flow anywhere in the body. The drug BC007 seems to do exactly that by neutralizing the harmful autoantibodies. Incidentally, new results from Erlangen were recently tweeted, which anyone can google. However, large-scale studies have been awaited for more than a year.
Any ideas why?
Piepenhagen : So far, as far as we know, funds have only been made available for a small research study that has started in Erlangen. Of course, studies of this magnitude do not lead to approval. Why don’t politicians support research into a drug for which, as I said, there are already promising treatment attempts? The disappointment about politics among those affected is huge.
Have you ever turned to politics?
Piepenhagen : Not just once. As the @nichtgenesen team, we wrote to the Federal Ministry of Education and Research via the “Ask the State” platform: Why aren’t you funding approval studies for the drug BC007? Answer: Approval studies go far beyond the needs of research funding. Application and implementation would be the responsibility of the company. The manufacturing company for the drug is a small Berlin start-up. Eleven people if my information is correct. How are they supposed to meet this challenge on their own? Why is there a double standard: Huge amounts of money were spent on vaccination and there were accelerated procedures? With Long-Covid, politics is letting us down.
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Karl Lauterbach seems to take the subject very seriously.
Piepenhagen: That’s just it. The minister rightly warns on Twitter about the long-Covid consequences. So why does he do so little for us affected? In an interview, Mr. Lauterbach considers the drug BC007 to be very promising. I’m sure if his daughter was affected, the clinical trials would have started the day before yesterday. In summary, it can be seen that there is obviously little political interest in helping those affected by long-Covid quickly and unbureaucratically. For us, this once again brings the realization that we must not let up. Neither do we. The Instagram campaign was just the beginning.
What else is planned? Piepenhagen : The more present we are, the better. A website and a YouTube channel are already under construction and we are planning a petition and larger campaigns. For example, we are considering an action with balls, as we know them from these ball pools. A ball for each of us. And then we organize a container that pours all the balls out in front of the Bundestag. So that politicians can finally understand how many people are left alone and fight for their health and financial survival every day.
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