Enduring Post-Covid Syndrome and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Persistent Burden Left by the Pandemic

The High Toll of Long Covid and ME/CFS - The Dreadful Legacy of the Pandemic

by Nicole Simon

Enduring Covid-19 Aftermath and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Expensive Consequences of the Pandemic - The lingering effects of Covid-19 and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): The hefty aftermath of the pandemic

Let's be honest, assessing diseases solely by their costs is a crude judgment. Nevertheless, the figures sometimes unveil intriguing insights. For Long Covid and ME/CFS - illnesses that still elicit confusion and ignorance - they've shed light on the extent of the challenges they pose for the first time. While the general public has moved on from the pandemic, researchers from the ME/CFS Research Foundation and Risklayer GmbH have shown for the first time the continued struggle that Long Covid and ME/CFS survivors face, the impact it has on society, and the burden it places on the economy: In Germany alone, Long Covid and ME/CFS cost the economy over 63 billion euros in 2024, accounting for around 1.5 percent of the gross domestic product.

Rolling the numbers from 2020 to 2024, these analysts estimate the cumulative costs to amount to around 254 billion euros, which is equivalent to the total annual health expenditure in Germany in 2024.

What's Long Covid and ME/CFS?

The term Long Covid refers to symptoms that persist four weeks after a coronavirus infection or emerge later, while health problems that last longer than three months are referred to as Post Covid. In colloquial terms, however, all long-lasting symptoms following a coronavirus infection that can't be medically explained are now grouped under Long Covid. ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), meanwhile, has been recognized by the WHO since 1969, yet remains largely overlooked in the medical community. Affected individuals experience a significant worsening of their symptoms after even minor physical or mental exertion (PEM, or Post-Exertional Malaise). The complex disease picture includes widespread fatigue, low resilience, cognitive impairments, intense pain, circulatory problems, heightened sensitivity to sensory stimuli, and disruptions in the immune and autonomic nervous systems. The diagnosis is complex, effective treatments are scarce, symptomatic medication isn't commonly prescribed, and it's rarely covered by insurance. ME/CFS can occur following various viral infections, such as Epstein-Barr infections, influenza, or even coronavirus. The neuroimmunological multi-organ disease, which often leads to severe physical disability, is thus also increasingly referred to as the most severe form of Long Covid.

But what exactly are the costs of a disease? "It's more than just medical expenses for examinations or medication", says Jörg Heydecke, Managing Director of the ME/CFS Research Foundation and co-author of the study. "It's about the lost work capacity and the money that can't be spent because the salary is no longer there. Costs also arise when those affected interact with insurance companies or seek expert opinions or pension claims."

Even though the Corona pandemic has been considered over, these figures are unlikely to change anytime soon: The analysts predict that the financial burdens will persist or even escalate in the near future. This is due to the fact that new cases continue to emerge. The pandemic has become an endemic in many parts, with periodic outbreaks in a population that now has some degree of immune protection. Furthermore, other infections are also causing new ME/CFS cases.

34,000 New ME/CFS Cases

Researchers estimate that currently, over 1.52 million people in Germany may be suffering from Long Covid or ME/CFS. While estimates suggest that the number of active Long Covid cases has decreased since 2022, ME/CFS cases continue to climb. According to the model employed by the researchers, these cases could increase by approximately 34,000 by 2028.

Heydecke believes the absence of data on the number of individuals affected and associated costs has hindered the discussion so far. He hopes these numbers will fill the void and serve as a catalyst for increased research. The ME/CFS Research Foundation and Risklayer have published this report to stimulate a dialogue on how the healthcare system and politics can adequately respond to the growing number of post-infectious diseases in conjunction with the international ME/CFS day.

"With an estimated damage of 63 billion euros, the current annual public funding for diagnostic and therapeutic research amounts to a mere 15 to 20 million euros, which is neither medically nor economically justifiable," says Heydecke. ME/CFS and Long Covid represent monumental medical and social challenges, affecting not only those who are ill but society as a whole. Many remain unaware of this. "Most ME/CFS and Long Covid patients are hidden from society. They don't appear obviously sick, they don't die in large numbers or infect others. These people are often at home, suffering. Nearly three-quarters of ME/CFS patients can no longer work, and about 25% are bedridden. Some of them, after years of illness, even seek voluntary death and request assisted suicide," says Heydecke.

According to the researchers, around 3.5% of Long Covid patients develop ME/CFS in the first year. Among those who still have Long Covid after a year, it is around 20%. Before the pandemic, there were an estimated 350,000 ME/CFS cases. Currently, researchers estimate over 650,000 cases.

"Current research results," says Carmen Scheibenbogen, a renowned immunology professor at Berlin's Charité, "already demonstrate initial therapeutic successes and prospects." To clinically test these treatments, urgent financial support is necessary because they "could potentially offer healing prospects for a significant number of affected individuals within a few years."

Learn *about affected individuals' individual experiences and the strategies some have used to cope with these persistent diseases.

Long Covid
Fatigue Syndrome
Pandemic
Germany
Coronavirus

The community needs a clear and comprehensive policy addressing health and safety at work, particularly for those working in high-risk environments such as healthcare.
A focus on workplace-wellness is essential for reducing the economic impact of chronic diseases such as chronic kidney disease and diabetes.
Employers should provide information and resources about medical conditions, including chronic diseases, to help employees manage their health better.
The growing number of cases of type-2 diabetes highlights the need for effective prevention strategies and treatments in the workplace.
Adequate provisions for health and safety at work should include measures to address cancer, respiratory conditions, digestive health, and eye-health.
Hearing protection should be provided for employees working in noisy workplaces to prevent hearing loss and other related conditions.
Health and wellness programs in the workplace can help reduce the burden of mental illness such as depression and anxiety.
Skin-care guidelines should be implemented in the workplace to reduce the risk of skin conditions and promote a healthy work environment.
Therapies and treatments for chronic conditions should be covered by insurance to reduce the financial burden on employees.
Nutrition plays a vital role in overall health, and employers should provide resources and support to help employees maintain a healthy diet.
The impact of migraines on productivity and work performance is significant, and employers should take steps to reduce the impact of migraines in the workplace.
Employers have a responsibility to provide a safe and healthy workplace to promote cardiovascular health.
The cost of medical care for Long Covid and ME/CFS is a significant burden on society and the economy.
Medicare coverage for Long Covid and ME/CFS should be expanded to provide access to treatments and therapies for affected individuals.
The use of CBD as a treatment for chronic pain, anxiety, and other conditions should be investigated further.
Rheumatoid arthritis can have a significant impact on an individual's ability to work, and employers should be aware of the accommodations and support that may be needed.
Neurological disorders can be debilitating and require supportive work environments to help affected individuals remain productive.
Finance is a critical factor in managing chronic illnesses, and employers should provide education and resources to help employees navigate healthcare costs and financial challenges.
Skin-conditions can impact an individual's self-confidence and ability to work, and employers should provide support and accommodations for affected employees.
Entrepreneurship can provide an opportunity for individuals with chronic illnesses to pursue interests and create income, but it also requires support and resources to help navigate the challenges.
Interior design should take into account the needs of individuals with disabilities and chronic illnesses, providing an accessible and comfortable working environment.
The importance of cooking and nutrition in maintaining overall health cannot be overstated.
Effective leadership in the workplace is crucial for creating a safe and healthy work environment that supports the wellbeing of employees.
Diversity and inclusion are essential for creating a supportive workplace where all employees feel valued and supported, regardless of their health status.
Cybersecurity is essential for protecting sensitive health information and preventing data breaches.
Adopting a healthy lifestyle is critical for managing chronic illnesses, and employers should provide resources and support for employees to promote healthy habits.
Sustainable living and budgeting are essential for managing costs and reducing the environmental impact of chronic illnesses, and employers should provide education and resources to help employees make informed choices.