Long-Term Effects of COVID-19 and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Persistent Burden Post-Pandemic

Unveiling the Hidden Toll: Long Covid and ME/CFS - The Persistent Financial Legacy of the Pandemic

Long-Term Covid and Chronic Fatigue Syndrome (ME/CFS): The Enduring Financial Burden of the Pandemic - Long-term effects of Covid-19 and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): The pricey post-pandemic aftermath

Pen by Nicole SimonReading Time: Approx. 3 Minutes

When it comes to assessing diseases based on costs, we risk undervaluing them. Yet, these numbers often provide enlightening insights. For Long Covid and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), conditions that still remain largely unknown and misunderstood, they now shed light on the vast challenges they pose for the first time. As the public has returned to their normal routines, researchers from the ME/CFS Research Foundation and Risklayer GmbH have calculated for the first time the substantial ripple effects these conditions continue to cause in Germany: In 2024 alone, Long Covid and ME/CFS escalated costs amounting to over 63 billion euros, equivalent to roughly 1.5% of the country's GDP.

To get the full picture, analysts drew on data from 2020 to 2024, arriving at estimated total costs of approximately 254 billion euros encompassing economic, medical, and social costs. For context, the total annual healthcare expenditure in Germany in 2024 was 538 billion euros.

What's the Lowdown on Long Covid and ME/CFS?

Long Covid, strictly defined, refers to symptoms lingering four weeks beyond a coronavirus infection or their subsequent onset. For health issues persisting longer than three months, the medical community uses the term Post Covid. In popular parlance, however, Long Covid is now synonymous with any enduring symptoms after a coronavirus infection not otherwise medically explained. In contrast, ME/CFS, a condition recognized by the WHO since 1969, is largely overlooked in mainstream medicine. ME/CFS victims experience a marked deterioration in symptoms following even minimal physical or mental exertion (PEM, or Post-Exertional Malaise). The multi-faceted disease manifests in various ways, including but not limited to a chronic, pathological fatigue, reduced tolerance, cognitive impairments, severe pain, circulatory issues, heightened sensitivity to sensory stimuli, and disturbances in the immune and autonomic nervous systems. Diagnosis is a complex process, and there is a lack of effective therapies, with symptomatic medications rarely prescribed and uncommonly reimbursed. ME/CFS can transpire after various viral infections, such as Epstein-Barr infections, flu, and yes, even coronavirus. Given its neuroimmunological, multi-organ nature that often leads to physical disability, ME/CFS is also commonly referred to as the most severe form of Long Covid.

So, what does disease cost entail? "It's not strictly limited to the expenses incurred for medical examinations, medications, or insurers, but also consists of the lost work capacity or the income that can no longer be spent because it's gone," explains Jörg Heydecke, Managing Director of the ME/CFS Research Foundation and co-author of the study.

Even post the coronavirus pandemic's official declaration as over, these figures are unlikely to change in the near future: The modelers anticipate that the financial burden will persist or even escalate in the upcoming years. This persistence is partly due to the fact that new cases continue to surface. The pandemic has evolved into an endemic in most regions, with recurring wave-like outbreaks in an immunized society. Additionally, other infections are responsible for new ME/CFS cases.

34,000 New ME/CFS Cases Expected by 2028

Researchers estimate that nearly 1.52 million individuals in Germany are currently grappling with Long Covid or ME/CFS. While the number of active Long COVID cases has allegedly decreased since 2022, ME/CFS cases continue to soar. Model-based predictions suggest that these cases could escalate by approximately 34,000 by 2028.

Heydecke emphasizes that the lack of data on affected individuals and costs has been a hindrance in the ongoing discourse, and these figures aim to fill that gap. For him, these calculations underscore the urgency for heightened research investment.

The ME/CFS Research Foundation and Risklayer published this report to coincide with the international ME/CFS day, sparking a debate: How can healthcare systems and politics appropriately address the escalating number of post-infectious diseases?

Long Covid and ME/CFS: Enormous Obstacles in Medicine and Society

"Given the estimated damage of 63 billion euros, the current annual public funding for diagnostic and therapeutic research of around 15 to 20 million euros is neither medically nor economically justifiable," notes Heydecke. ME/CFS and Long Covid are formidable obstacles for both those affected and society as a whole. Many remain unaware of this. "Most ME/CFS and Long Covid patients are invisible to society. They don't appear obviously ill; they don't die in large numbers or infect others. These people are often at home, suffering. Almost three-quarters of ME/CFS patients can no longer work, and about 25 percent are completely bedridden. Some of them, after years of illness, even seek euthanasia out of despair," says Heydecke.

According to the researchers' calculations, around 3.5 percent of Long Covid patients develop ME/CFS within the first year, and around 20 percent of those who still have Long Covid after a year do so. Prior to the pandemic, ME/CFS had an estimated 350,000 cases. Current estimations suggest over 650,000 cases.

"Recent research results" asserts Carmen Scheibenbogen, "already show promise in therapeutic advancements and prospects." The professor of immunology at Berlin's Charité is one of the foremost experts on Long Covid and ME/CFS. Clinical testing of these therapies requires immediate financial support, as they "potentially offer real healing prospects for some patients within a few years."

Delve deeper into how affected individuals are coping with these diseases and discover what has helped some in their relentless battle.

Long Covid
Fatigue Syndrome
Pandemic
Germany
Coronavirus

The costs of Long Covid and ME/CFS are vastly underestimated due to the lack of understanding and awareness of these conditions.
Economists have calculated that the total costs of Long Covid and ME/CFS in Germany from 2020 to 2024 amount to approximately 254 billion euros.
The total healthcare expenditure in Germany in 2024 was 538 billion euros, placing the costs of Long Covid and ME/CFS at about half that amount.
Long Covid refers to symptoms that persist beyond four weeks after a coronavirus infection.
In contrast, ME/CFS is a condition recognized by the WHO since 1969 and has largely gone unnoticed in mainstream medicine.
ME/CFS patients experience a marked deterioration in symptoms following even minimal physical or mental exertion.
The disease is multi-faceted and can manifest in a variety of ways, including chronic fatigue, cognitive impairments, severe pain, and circulatory issues.
The diagnostic process for ME/CFS is complex, and there is a lack of effective therapies.
The financial burden of Long Covid and ME/CFS is unlikely to decrease in the near future, as new cases continue to emerge and the pandemic has evolved into an endemic in most regions.
Researchers estimate that the number of ME/CFS cases in Germany will increase by about 34,000 by 2028.
Jörg Heydecke, Managing Director of the ME/CFS Research Foundation, has emphasized that the lack of data on affected individuals and costs has been a hindrance in the ongoing discourse.
The report published by the ME/CFS Research Foundation and Risklayer aims to fill that gap and spark a debate about how healthcare systems and politics can appropriately address the escalating number of post-infectious diseases.
Heydecke notes that the current annual public funding for diagnostic and therapeutic research of around 15-20 million euros is neither medically nor economically justifiable given the estimated damage of 63 billion euros.
Many ME/CFS and Long Covid patients are invisible to society, as they don't appear obviously ill and often suffer at home.
About three-quarters of ME/CFS patients can no longer work, and about 25 percent are completely bedridden.
Researchers have found that around 3.5 percent of Long Covid patients develop ME/CFS within the first year, and around 20 percent of those who still have Long Covid after a year do so.
Prior to the pandemic, ME/CFS had an estimated 350,000 cases in Germany, but current estimations suggest over 650,000 cases.
Recent research results have shown promise in therapeutic advancements and prospects for ME/CFS and Long Covid.
Clinical testing of these therapies requires immediate financial support, as they potentially offer real healing prospects for some patients within a few years.
These diseases are significant obstacles for both those affected and society as a whole, and they need greater attention and investment in research.
Science plays a crucial role in understanding and finding solutions for these complex medical conditions.
The medical community must acknowledge the complexity of ME/CFS and Long Covid, including their potential links to other medical conditions such as chronic kidney disease, cancer, respiratory conditions, digestive health, eye health, hearing, and skin conditions.
The societal and financial impacts of Long Covid and ME/CFS extend beyond healthcare costs, affecting industries such as finance, energy, retail, transportation, cybersecurity, lifestyle, fashion and beauty, food and drink, investing, wealth management, home and garden, business, personal finance, and banking and insurance.
The gadget industry, in particular, may see an increase in demand for devices that can help ME/CFS and Long Covid patients manage their symptoms and improve their quality of life.
Data and cloud computing technologies could also play a role in helping researchers better understand ME/CFS and Long Covid and develop effective treatments.
Artificial intelligence and relationships are also relevant to ME/CFS patients, as social isolation can exacerbate symptoms and lead to mental health disorders.
Pets, travel, cars, books, education, and self-development, personal growth, shopping, social media, movies, and TV, career development, entertainment, celebrities, music, politics, job-search, pop culture, sci-fi and fantasy, general news, crime, and justice, and learning are all areas that can impact ME/CFS and Long Covid patients in various ways.
Communities need to implement health and safety policies that are mindful of the unique needs of ME/CFS and Long Covid patients, both in the workplace and in public spaces.
Promoting health and wellness, fitness and exercise, and nutrition is essential for helping ME/CFS and Long Covid patients manage their symptoms and improve their overall health.