The rising cost of Long COVID and ME/CFS in Germany, 2025, ME/CFS Research Foundation

forestglip

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Germany: ME/CFS Research Foundation

The rising cost of Long COVID and ME/CFS in Germany

For the first time, a new report released by Risklayer and the ME/CFS Research Foundation models the prevalence and cost of Long COVID and ME/CFS in Germany. The report looked at the entire five-year period between 2020 and 2024 and found that both diseases created a substantial societal burden. This website summarises key findings and conclusions from the report. The full report, which includes a detailed description of the model developed to generate the novel data, can be accessed via the download link below.
Using an innovative approach, by combing existing data and findings from literature with novel data from a model specifically developed for this report, the authors show that, at the end of 2024, 871,086 people in Germany were likely living with Long COVID, while an additional 650,183 people were living with ME/CFS (the latter includes ME/CFS diagnosed as a result of COVID-19/Long COVID). See also Table 1 of the report. In total, more than 1.5 million people in Germany were living with either Long COVID or ME/CFS at the end of 2024.

Link to summary webpage
Link to full report
 
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Interesting. How does this compare to the uk figures we have?

Or vice versa if uk was the same as uk what would these numbers translate to for uk? Are they similar or do we still have inconsistencies with how things are grouped?
My hunch as an economist is that the numbers are probably quite similar because the countries are quite similar. But they depend a lot on how you calculate them!

Regardless, the bottom line will always be that it’s very, very profitable to invest in trying to solve the problem and trying to prevent the problem in the first place. And that’s really all that should matter.
 
The Economist estimated Long Covid as costing US $15.4bn and UK GDP as $3.4trn, which, if that's nine and twelve noughts, I think equals c0.45% of GDP.

So a much smaller figure even allowing for the omission of any estimate of pre Covid MECFS costs.

All we had for that was the admittedly conservative 2016 figure of UK £3.3bn from the counting the cost report , which really needs redoing to reflect the post pandemic situation. That converted to c$4.4bn at today's rate according to Google, which if you just add as is (ignoring inflation duplication and exchange rate issues) coarsely gives 0.58%.

But of course I'd be the first to admit that that's not remotely robust or scientific - there's so many inaccuracies of prevalence, scope, definition and methodology that I doubt getting a robust comparable figure is possible (unless a dedicated comparative study was carried out).
 
The rising cost of Long COVID and ME/CFS in Germany
Seems like a useful report in collaboration with the company Risklayer which specialises in risk analysis and management.

Perhaps useful to create a separate thread to discuss it in more depth?

I've tried to make this summary for social media:
https://twitter.com/user/status/1922946454454198633

https://bsky.app/profile/mecfsskeptic.bsky.social/post/3lp773eaqsn24

1) This is an interesting economic report that will likely be very useful for advocacy. It estimates the costs of Long Covid and ME/CFS in Germany to be €63.1 billion (1.5% of GDP) in 2024.

2) The report was produced by the ME/CFS Research Foundation and Risklayer, a professional company that does risk analysis and mitigation for governments and large corporations.

3) Let's look at the main results of their model. It estimates that LC cases peaked in 2022 and decreased to a steadier number of around 800,000 thereafter. ME/CFS prevalence rose from 400.000 in 2019 to more than 600,000 cases in 2024, so an increase of around 50%.
497875263_1192809109523132_7306732610388873107_n.jpg


4) Data on prevalence of ME/CFS comes from the National Association of Statutory Health Insurance Physicians (KBV). For a population of approximately 80 million, the pre-pandemic prevalence was around 0.5%, so in line with other estimates.
497510601_1192809132856463_902395982022770354_n.jpg


5) Their estimate for the economic cost (30 billion or ca. 0.7% of GDP for ME/CFS in 2024) are higher than previous ones, but it’s likely that previous ones were underestimates.
497505499_1192809169523126_930433113076915515_n.jpg


6) Table 3 gives a useful comparison. The 2008 Jason et al. estimate is commonly used as a reference but it found a cost of only around 0.15% of GDP which seems quite low. The EUROMENE estimate (Pheby et al. 2020) used €40 billion or around 0.3% of GDP.
497625019_1192809209523122_7171876796667089719_n.jpg


7) Here's an overview of the model's assumptions. For Long Covid they seem quite conservative: approximately 10% of COVID-19 cases go on to have persistent symptoms but 80% of those recover within a year. After that first year the recovery is assumed to be 10% for this group.
498640430_1192809239523119_5753929637489907781_n.jpg


8) The model assumes that 3.5% of LC patients get ME/CFS within 1 year and ca. 20% of long-term Long Covid patients develops ME/CFS after the first year. This seems like a more reasonable estimate than the 50% of LC = ME/CFS that is sometimes claimed.

9) It is a bit unclear how they calculated the economic impact exactly. If I understand correctly, they used an inability to work for ME/CFS between 31-58% for ME/CFS and 24%-31% for Long Covid.

10) Link to the full report:
https://mecfs-research.org/en/costreport-long-covid-and-mecfs/
 
ME Research UK:


The German charity, the ME/CFS Research Foundation, has published a report which modelled up-to-date data on the prevalence and societal costs of Long COVID and ME/CFS in Germany. The report, published on International ME Awareness Day (12 May) 2025, discloses that between 2020 and 2024, ME/CFS and Long COVID cost Germany more than €250 billion.

Full Report - https://tinyurl.com/4w8uvw77
ME Research UK's summation - https://tinyurl.com/2ze36w

 
https://www.adelaide.edu.au/newsroom/news/list/2025/06/02/counting-the-cost-of-long-covid-and-me/cfs

Counting the cost of Long COVID and ME/CFS
Posted on Jun 2 2025 by Rhiannon Koch
In just one year, Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) cost the German economy €63.1 billion (AU$111 billion), or about 1.5 per cent GDP, according to a new German-Australian study.

The study , carried out by international risk analytics company Risklayer and the German ME/CFS Research Foundation, analysed the prevalence and cost of the conditions since the beginning of the pandemic in 2020.

University of Adelaide Medical School Adjunct Associate Professor Amy McLennan and Institute for Sustainability, Energy and Resources Adjunct Professor James Daniell led the project.

The team found Long Covid cases in Germany peaked at 1.75 million in 2022, while ME/CFS cases have continued to rise, reaching 650,000 by the end of 2024.

“This is the first time we’ve applied this type of risk modelling approach to understanding the societal impact of chronic disease,” says Adjunct Professor Daniell, also CEO of Risklayer.

“Our aim with this study was to inform policy and political decision-making on an issue where there is significant complexity and a lack of good-quality surveillance data.

“As Australian John Monash Scholars, we hope we can also bring this approach back to Australia and apply it to a range of issues.”

The study explored the social, economic and medical costs of both Long Covid and ME/CFS impacts separately, as well as the sub-group of people who fit the diagnostic criteria for both.

“Long Covid implicates multiple body systems, from the heart, lungs and other organs to the immune, vascular and reproductive systems, and often includes symptoms of fatigue, shortness of breath, brain fog, post-exertional malaise and muscle pain,” says Adjunct Associate Professor McLennan.

“Long COVID has also brought renewed attention to the chronic condition ME/CFS, which shares many overlapping symptoms and may in some cases develop as a consequence of SARS-CoV-2 infection.

“Although ME/CFS has been recognised for decades, the scale of this infection-associated chronic illness has expanded in the wake of the pandemic.”

Both Long COVID and ME/CFS are associated with substantial disability, reduced quality of life, increased demand for medical care, and prolonged absence from work and social life.

“Young people are often no longer able to continue their education and family carers take on a large part of the care under great strain, while travelling long distances to seek diagnosis and treatment,” says Adjunct Associate Professor McLennan.

“At a societal level, there are also considerable costs: for medical care, nursing care, loss of work, social benefits and lost tax revenue. Companies suffer productivity losses and purchasing power is lost.”

Since the report’s release in Berlin in May, the new German federal government has promised to improve funding and initiatives targeting Long COVID and ME/CFS.

 
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