The Financial Burden of Long Covid and ME/CFS: Uncovering the Hidden Costs of the Pandemic
Costly Health Consequences of Long Covid and ME/CFS: A Post-Pandemic Burden - Persistent Symptoms from Covid-19 and ME/CFS: Economic Burden Remaining in Wake of Pandemic
by Nicole Simon⏰ - 3 Min Read
Let's face it, judging diseases based on their financial implications hardly does them justice. But sometimes, numbers can paint a stunning picture. For Long Covid and ME/CFS - conditions that are still often overlooked and poorly understood - these figures are shedding light on potential costs for the first time. While the general public seems to have moved on from the pandemic, researchers from the ME/CFS Research Foundation and Risklayer GmbH have estimated that Long Covid and ME/CFS will cost a staggering €63.1 billion in Germany alone by 2024 - that's approximately 1.5% of the country's GDP!
If we add up the years 2020 to 2024, the total costs for these conditions are projected to be around €254 billion. To put this into perspective, the annual healthcare expenditure in Germany reached €538 billion in 2024.
What's the Big Deal about Long Covid and ME/CFS?
The term Long Covid refers to symptoms that linger four weeks or more after a coronavirus infection or have appeared since then. When health problems persist for over three months, the medical profession refers to the condition as Post-Covid. In everyday conversation, though, all long-lasting symptoms following a coronavirus infection that can't be medically explained are now lumped together as Long Covid. ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), on the other hand, has been recognized by the World Health Organization since 1969, but remains under-researched and under-funded in the medical field. Affected individuals often experience worsening of symptoms after any physical or mental exertion (PEM), and may suffer from symptoms such as severe fatigue, low tolerance, cognitive impairments, pain, circulatory issues, heightened sensitivity to stimuli, and disturbances in the immune and autonomous nervous systems. Despite the complex nature of this disease, effective treatments are scarce, and diagnostic methods are complex and rarely covered by insurance. ME/CFS can be triggered by various viral infections, including Epstein-Barr infections, influenza, and even coronavirus.
So, what exactly are these "costs" of a disease? "It's not just about the medical expenses for tests, medicines, and so forth," explains Jörg Heydecke, Managing Director of the ME/CFS Research Foundation and co-author of the study. "It's also about the lost workforce and the income that's not available because the salary is now missing. Costs also arise when those affected have to deal with insurance companies, or when benefit claims are checked."
While the pandemic may be over, these figures won't likely change significantly anytime soon. The modelers predict that the financial pressures will continue or even increase in the years ahead. This is partly due to the fact that new cases are still emerging. The pandemic has morphed into an endemic in many areas, with periodic outbreaks in a society that now boasts some level of immunity. Additionally, other infections are also known to cause new ME/CFS cases.
A Whopping 34,000 New ME/CFS Cases
Researchers estimate that over 1.52 million people in Germany might be struggling with Long Covid or ME/CFS. While the number of active Long-Covid cases appears to have dropped since 2022, the number of ME/CFS cases is on the rise. According to projections by these researchers, there could be approximately 34,000 new ME/CFS cases by 2028.
Without this patient and cost data, the discussion has been lacking punch, says Heydecke: "We want to fill this gap with these numbers." For him, these calculations make a compelling case for significantly more research.
The ME/CFS Research Foundation and Risklayer have published this report on International ME/CFS Day to ignite debate: How can healthcare systems and politics adequately respond to the growing number of post-infectious diseases?
Long Covid and ME/CFS Pose Serious Medical and Social Challenges
"€63.1 billion is currently opposed by only approximately €15-€20 million in annual public funding for diagnostic and therapeutic research, which is neither medically nor economically justifiable," says Heydecke. ME/CFS and Long Covid pose massive medical and social challenges that go beyond those affected. Many people are oblivious to this struggle. "Most ME/CFS and Long Covid patients are invisible to society. They don't appear ill, they don't die in large numbers, or infect others. These people are often confined to their homes, suffering. About three-quarters of ME/CFS patients are unable to work, and approximately 25% are bedridden. Some, after years of illness, even seek voluntary assisted suicide," says Heydecke.
According to the researchers' calculations, around 3.5% of Long Covid patients develop ME/CFS in the first year, and around 20% of those who still have Long Covid after a year do so. Before the pandemic, it was estimated that there were 350,000 ME/CFS cases. Now, researchers estimate over 650,000 cases.
"Current research results are already revealing first therapeutic successes and prospects," says Carmen Scheibenbogen, a leading expert on Long Covid and ME/CFS, and a professor at Berlin's Charité. To clinically test these therapies, urgent funding support is needed, as they "could possibly offer real healing prospects for some patients in a few years."
Read here the journey of those battling these diseases and discover what has helped some in their fight.
- Long Covid
- Fatigue Syndrome
- Pandemic
- Germany
- Coronavirus
[1] Source: ME/CFS Research Foundation and Risklayer GmbH report.
- The financial burden of Long Covid and ME/CFS is significant, with researchers estimating that Long Covid and ME/CFS will cost €63.1 billion in Germany alone by 2024, which is approximately 1.5% of the country's GDP.
- science plays a crucial role in understanding these conditions, as effective treatments and diagnostic methods are scarce for ME/CFS, and longitudinal studies are needed to better understand the long-term effects of Covid-19.
- mental health is an important aspect of managing these conditions, as the physical and financial challenges can lead to feelings of isolation, depression, and anxiety. Financial support for research on Long Covid and ME/CFS is essential to improve treatment options and support those affected by these conditions.
