“Scandal”: How politicians mock vaccine-damaged and long-Covid sufferers

There are a variety of reasons why political disenchantment is increasing in Germany. I, too, find myself scratching my head at some of the decisions made in Berlin. Nevertheless, I always try to remind myself that there are certainly more enjoyable activities in life than being a politician these days. However, my understanding of this finally ends at one point.

Although the German government has long since declared the coronavirus pandemic over, many people are still suffering from its consequences. A large group of these are those struggling with long COVID or damage caused by the COVID vaccination , known as post-vaccine syndrome. In the worst case scenario, those affected develop ME/CFS—a severe chronic illness characterized by extreme exhaustion, exercise intolerance, and numerous physical symptoms.

In Germany alone, it's estimated that around 600,000 people are suffering from ME/CFS , and the number has doubled since the coronavirus pandemic. Now politicians are once again failing those affected – and the reasoning behind this leaves me speechless.

Federal government does not want to fund drug studies – is this still possible?

A cure for ME/CFS is still nowhere in sight, nor is adequate medical care, sufficient availability of effective medications, or proven effective therapies. According to experts like Charité professor Carmen Scheibenbogen, a new drug called inebilizumab could offer a glimmer of hope. Researchers now want to determine whether these expectations are justified in a clinical trial. However, the Federal Ministry of Research , then headed by FDP politician Bettina Stark-Watzinger, has refused to provide financial support for the study .

A report obtained exclusively by the Berliner Zeitung presents several arguments against funding the study. In its conclusion, written in English, the authors conclude that the number of new COVID cases leading to ME/CFS is "decreasing dramatically." The Ministry of Research subsequently informed the project sponsor, the German Aerospace Center, that the study had been given "low priority."

The key criteria for funding are the "relevance of the issue for patients, for example, patient benefit or quality of life," according to the ministry. Furthermore, the "relevance of the issue for the healthcare system in Germany, for example, with regard to the burden of disease and the frequency/probability of a disease as a cause of death," is crucial. Finally, the number of affected individuals plays a role. This is hard to beat in terms of cynicism.

ME/CFS: Number of affected people has doubled since Corona

For almost a year and a half now, I've been watching my friend battle her long-term COVID-19 illness. Her family and I are trying as best we can to support her in her marathon against all the adversities of a completely overwhelmed healthcare system . But her community can't compensate for everything that politicians and doctors in Germany fail to do with worrying regularity. It's become sheer mockery how those with long-term illnesses in Germany have been abandoned since the coronavirus pandemic.

My girlfriend is very closely connected with other sufferers of long COVID and ME/CFS, and she keeps hearing about new cases. According to a survey by the National Association of Statutory Health Insurance Physicians (KBV), the number of patients doubled from the beginning of the pandemic to approximately 620,000 in 2023. The German Society for ME/CFS also believes that the data refutes the claim that it is a rare disease. According to the EU definition, there would have to be fewer than five patients per 100,000 people – but this is not the case.

The non-funding of a promising drug trial is the next chapter in a never-ending story of health policy ignorance. Last year, the Berlin Senate broke its promise to establish long-COVID outpatient clinics in the capital, providing multiple contact points for patients. "From the Senate's perspective, medical treatment for the affected group is guaranteed by the standard care structure," was the completely absurd justification at the time. This denial of reality demonstrates once again that politicians seem unwilling to properly address the consequences of the pandemic.

Sick people rage against politics: “We lack the strength – you lack the will”

In my friend's affected groups, discontent about the lack of political support is evident almost daily. Family doctors are generally overwhelmed by the symptoms. Often, those affected are simply advised to exercise and move more – claiming it's all purely psychological. Rehabilitation or alternative therapies such as simulated altitude training, known as interval hypoxia-hyperoxia therapy (IHHT), are only successful for some sufferers. For others, however, the condition actually worsens. There are also no widely available medications, so those affected resort – if at all – to off-label medications that lack official approval.

At the nationwide lying-down demonstration a few weeks ago, in which thousands of people suffering from ME/CFS demonstrated for more support, the frustration of those affected was expressed in a depressing way. "We lack the strength – you lack the will" read one of the demonstration signs – "We don't lie around, we fight lying down" on another. An Australian woman tearfully recounted that she had been fighting for more recognition and support at the lying-down demonstration for years. However, "nothing" had changed in all that time.

The World Health Organization lifted the international health emergency due to the coronavirus pandemic as early as May 2023. Nevertheless, it took two years for the German government to finally establish a commission of inquiry to examine Germany's handling of the pandemic. However, it remains questionable whether this will truly help the many long-term victims of coronavirus. Instead, politicians must finally realize that they cannot simply ignore hundreds of thousands of people in Germany.

In the coalition agreement, the new federal government promises more research and better care for people suffering from ME/CFS, long COVID, and post-vaccine infections. One can only hope that these words will finally be followed by action.

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