How a sick MP became active

January 3, 2021 changed a lot in the life of the CSU politician Erich Irlstorfer. On this day, the then 50-year-old was infected with Covid-19 while visiting his mother in a palliative care unit in Markt Wartenberg in Upper Bavaria – “despite extreme precautionary measures”, i.e. daily tests and regular protective clothing, as he emphasizes. Nine days later he was in the hospital with lung problems, a completely out of step blood pressure and a sharp drop in oxygen saturation. His mother had died of Covid-19 three days earlier. And the SARS-CoV-2 virus also hit the rest of the family: the woman, the 17-year-old daughter, the nine-year-old son.

Irlstorfer himself went to rehab for a few weeks, first as an outpatient, then as an inpatient. As before, the diabetic struggles against bouts of fatigue and concentration disorders. His antibody levels are just rising again. The immune system is also working at full speed in the others, which is why none of the family members can be vaccinated.

Education and self-help

But all of this has not made the Freising member of the Bundestag and former AOK Bayern sales representative into a passive person. On the contrary: Irlstorfer not only fights against his own illness, he also wants to help other affected people. At the end of May, together with 12 other colleagues, he set up an association called “ELIAS”. The first name is an abbreviation, it stands for “Covid-19 sufferers and long-term injuries as well as their relatives for information, education and self-help”.

In addition, the aim is to ensure that medical care for those affected is improved and that “cooperation between those affected, their relatives and doctors and scientists” is promoted, according to the statutes. First of all, it was “urgent” in Irlstorfer’s constituency 214, ie the Upper Bavarian districts of Freising, Pfaffenhofen an der Ilm and Neuburg-Schrobenhausen. However, it was already heard at the founding meeting that the claim is more extensive. There are “thousands of people in Germany who are suffering from the long-term effects of Covid-19,” emphasized the initiators. For them there is currently no approach to help “so that it becomes the way it was before”. And the occurrence of fatigue syndrome (CFS / ME), from which around two percent of corona patients suffer, is particularly problematic.

Strong response to a Facebook video

The idea arose from the huge response to a Facebook video with which Irlstorfer had informed the citizens of his constituency about his illness – at the beginning of February and still from his rehab in Passau. Although he already knew beforehand that this disease was “not nice”, says the tired-looking patient. But if you go through it yourself, you experience everything again differently, physically and mentally. Claims that Covid-19 is just like a kind of flu are in any case “an absolute nonsense”.

7500 people viewed the article, reports Irlstorfer. And quite a few not only showed sympathy, but – as also affected – also described similar helplessness as he experienced himself: They were discharged as healthy, but did not get back on their feet. They lacked contact persons, competent doctors and psychotherapists, tips on how to deal with annoyed employers or incomprehensible employees at health and pension insurance companies.

Renowned experts on the advisory board

The association has “regional roots”, says the chairman. But one does not want to “dwarf”. Initiatives on a national, even international level are also aimed at. The fact that Irlstorfer is a member of the Bundestag’s health committee is not a disadvantage. Regional advisory councils, which were appointed at the constituent board meeting at the beginning of June, are supposed to provide the association with topics. An advisory board for national and international tasks wants to establish contacts with research and science.

The association has networked with many universities, institutions and health experts. And there are illustrious names that Irlstorfer lists. The Long Covid expert Carmen Scheibenbogen from the Institute for Medical Immunology at the Berlin Charité is among them, Uta Behrends from the Polyclinic for Pediatric and Adolescent Medicine at the Technical University of Munich, the former scientific director of the Innovation and Start-up Center for Biotechnology (IZB) in Martinsried and Spokesman for the Munich top cluster “m4 – personalized medicine and targeted therapies”, Horst Domdey, and the long-standing President of the Technical University of Munich, Wolfgang A. Herrmann.

An internet platform for September

The Bavarian Johannesbad Group from Bad Füssing with its nine specialist and rehabilitation clinics, the baby food manufacturer Hipp with its German headquarters in Pfaffenhofen and the building contractor Thomas Bauer from Schrobenhausen with his international contacts also indicated their support. Bavaria’s Minister of Health Klaus Holetschek (CSU) is making five million euros available for further research into Long Covid. And through party friend Manfred Weber, the group leader of the European People’s Party, one hopes for EU-wide networking.

The whole thing could get supraregional reach through an internet platform that is due to start on September 1st. The Bundestag, on the other hand, Irlstorfer’s professional playing field for eight years, is currently in the summer break and then fully in electoral mode. However, he also experienced sympathy and increased interest in the subject of Long Covid from there, reports the previous care officer of his group – across party lines. Incidentally, Irlstorfer wants to return to the federal parliament for the third time. He received 43 percent of the direct votes in 2017. And a vote of confidence from his party base. She made him a candidate with 96 percent of the vote.

The 51-year-old, who also sits on the Global Health subcommittee, dares to do the grueling job as a member of the Bundestag again. And he is open about his long covid handicap. There will be days when he has to take breaks, admits Irlstorfer. But then there are those that make him feel strong and energetic. “I want to help people through politics,” says the CSU politician. “That was true throughout my professional and political career.”

Displeased about corona downplayers

He may now see the federal government’s corona policy from a slightly different perspective. In the pandemic, Irlstorfer has already coined the sentence that the nursing staff could not pay rents just by clapping. But what positions does he take in the ongoing dispute over lockdowns and openings, tests and restrictions on freedom? The MP sounds astonishingly reserved. He is a declared opponent of mandatory vaccination, he says. Instead, continue to rely on persuasion, “the power of the word”. But it is essential that there is reliable information and vaccination offers for the whole of society.

However, Irlstorfer is a little annoyed when it comes to trivializing the corona. They are already on the lookout for them in their club. In order to protect against “infiltration”, all future members will be checked carefully before they are accepted, according to the announcement. And appearances by politicians, such as that of Vice Prime Minister Hubert Aiwanger, annoy the CSU man. Not because he does not want himself to be vaccinated, which is his right, but because he publicly stirs up fears of allegedly “massive side effects”. He expects more professionalism and a sense of responsibility from a deputy head of government on this very important topic, says Irlstorfer. Instead, the head of the Free Voters is apparently looking for “quick applause” and votes in certain circles.

“Still very thick boards to be drilled”

Due to his experience of illness, he reacts more “attacked” to people who want to belittle Corona and put the health of others at risk, reports Irlstorfer. And that he, as a person concerned, “goes into detail”. At the same time he sometimes has to “discipline himself very emotionally” when responding to certain statements.

In this respect, the association work is perhaps also an inner outlet for those affected. Despite the difficult time, many things went very well during his treatment, said Irlstorfer. He is grateful for that. On the other hand, there is an enormous need for research, knowledge transfer and assistance for patients. Whether in diagnostics, medical training, prevention – or in the enforcement of sick pay and possible disability. At the same time, it is important to reduce fears and to pursue prevention. They are currently making short films in the association to inform foreign citizens about vaccination in their mother tongue. “We are dealing with a completely new and very dangerous disease,” says the politician. It is important to “drill very thick boards”.

Rehabilitation clinics also set up self-help groups

The rehab clinics of the Median group of companies also announced the establishment of another nationwide self-help group for long-covid sufferers. Her project is supported by the State Association of Saxony for Prevention and Rehabilitation of Cardiovascular Diseases e. V. (LVS / PR).

“We not only want to share our expertise from now more than 2,000 treatments in this forum, but also enable the people affected to listen to each other and help”, explained the initiator and chief physician of the Clinic for Cardiovascular Diseases of the Median Clinic Bad Gottleuba, Christoph Altmann. A specialist platform called the “Medical Board Long Covid” has been on the Internet since May, with which the previous knowledge on Covid-19 long-term consequences is collected and thus attempted to optimize rehabilitation. And this was followed by the establishment of a generally accessible website called www.long-covid.de, which provides doctors, clinics, therapists and patients with the knowledge and treatment experience they have gathered.