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Protest in front of the German Bundestag

Photo: Metodi Popow / IMAGO

They lay down in front of the Reichstag in Berlin, in front of the Frauenkirche in Dresden and the town hall in Hamburg - again and again seriously ill people or their relatives in Germany demonstrate for better research on Long Covid.

Their messages are impressive: "ME/CFS - severely affected people buried alive in pain, suffering, silence, darkness" or "ME/CFS - we lose our lives without dying," was the sign on a campaign on Saturday in Dresden, for example. as the “MDR” reports.

However, the cries for help from those affected are still not being heard enough at a crucial point in politics, suggests a major request from the CDU/CSU parliamentary group in the Bundestag.

Bettina Stark-Watzinger's (FDP) Federal Research Ministry (BMBF) is actually responsible for promoting fundamental gains in knowledge in this area and thus increasing the chance of effective medication.

But the ministry is apparently already having difficulty communicating its investments in this area in a comprehensible manner.

According to the request, the BMBF has launched funding projects in basic research on Long Covid and ME/CFS worth 43.5 million euros by September 2023.

They are scheduled to run from December 2021 to probably the third quarter of 2027, i.e. around six years.

The funding volume was later increased to up to 59.5 million euros, but it is not clear over what period of time the additional millions should be invested and for what purpose.

What is striking is that just 4.2 million and 10.5 million euros are earmarked for new projects in 2024 and 2025, respectively.

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Bettina Stark-Watzinger (FDP), Federal Minister of Education and Research

Photo: Britta Pedersen/dpa

The term Long Covid covers hundreds of complaints, such as memory problems, shortness of breath, anxiety, muscle pain and sleep disorders, which can persist even months after a corona infection.

The focus is particularly on so-called fatigue; those affected are chronically exhausted and some can no longer leave their bed.

In some of these cases, ME/CFS is present, the letters stand for Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.

Such severe symptoms also occur in very rare cases after infections with other pathogens.

No overview of what lies ahead for the healthcare system

Stephan Albani, chairman of the education and research working group in the CDU/CSU parliamentary group, describes this as “completely inadequate.”

With a BMBF budget of more than 21 billion euros in 2024, “that’s nothing,” said the politician.

To put it into perspective: The 4.2 million euros earmarked for this year correspond to 0.02 percent of the BMBF's annual budget.

The party's research policy spokesman, Thomas Jarzombek, criticizes: "Nothing at all has come from the responsible Federal Research Ministry about Long Covid, ME/CFS on its own initiative." The funding was ultimately only increased again under pressure from the German Bundestag because its own government factions lacked patience lost with their minister.

Four years after the start of the pandemic, it's not just money that's lacking.

Important information about Long Covid is also missing.

And too rarely do institutions from the field of basic research cooperate with practitioners or, for example, the pharmaceutical industry, which would be responsible for the production of possible drugs.

The BMBF could also become active at this interface.

Little has happened so far.

Experts repeatedly call for greater cooperation.

»We urgently need more research and therapy studies.

And so that we can make rapid progress here, we should do research and clinical studies hand in hand," said immunologist Carmen Scheibebogen from the Charité in Berlin at a BMG press conference in July 2023. She is one of the leading experts on ME/CFS in Germany and receives funding from the Ministry of Health (BMG) and BMBF.

At the same event, Bernhard Schieffer, clinical director of the Giessen and Marburg University Hospital, called for “a decade of Long Covid research for ten years.”

Estimates from last year assume that around 2.5 million people in Germany are affected by Long Covid.

Other evaluations come to the conclusion that among 18 to 65 year olds, almost 400,000 people retain at least one symptom for a long time after a corona infection, according to the major inquiry.

How many patients with Long Covid and ME/CFS will need to be cared for in the coming years?

Not clear.

“The federal government does not yet have any model calculations that could reliably answer the questions about the development of the number of people affected by Long/Post-Covid, ME/CFS and Post-Vac Syndrome,” writes the BMBF.

Invitation to the “Round Table”

According to the major inquiry, the BMBF does not consider a larger research policy initiative analogous to the National Decade against Cancer to be necessary.

The federal government came to the conclusion that “given the current framework conditions in this research field, this is less expedient.”

There is also no provision for an additional position to coordinate projects between the BMBF, BMG and the Federal Ministry of Labor (BMAS).

We are in regular contact anyway.

After all: The BMG, led by Karl Lauterbach, has set up a multi-year funding priority for healthcare-related Long Covid research and launched a “Long Covid initiative”.

A website collects information on the topic for those affected.

Lauterbach also invited those affected, researchers, doctors and representatives of pharmaceutical companies to “round table” discussions twice last year.

The BMG then also provides a simple overview of the planned investments in research on Long Covid: From 2024 to 2028, “funds of up to 81 million euros are available,” according to the major inquiry.

In contrast to the BMBF, which is responsible for basic research, the BMG promotes so-called health services research.

Support is provided here for contact points at clinics that those affected can turn to in search of medical help.

This is also important, but additional knowledge from basic research is essential in order to be able to provide better care to patients there at some point.