ME/CFS costs billions – and we do... nothing?

Why research would be the best savings program

Imagine that somewhere in Germany, around 60 billion euros disappear every year. No scandal, no front-page headlines, no investigative committee. No bank robbery, no stock market crash – just gone.
The reason?
Long Covid and ME/CFS.

What sounds like a calculation error is the result of a new study:
Every year, Germany loses tens of billions of euros because around 650,000 people can no longer work due to these illnesses, need care, medical treatment – or are simply missing.

And what is happening politically?
Not much. People are watching. Or looking away. Or at their cell phones. (Maybe at the calculator – to check if this can really be true.)

But the math is actually quite simple:
If a disease costs billions, you could invest a few million to finally understand it better.
Right?
In other words, research that could help. Save lives. Preserve the workforce. Relieve the burden on relatives. And, incidentally, save money.

The costs – a rough estimate

An international research team has calculated the waves of infection, disease progression, and social consequences. The result:

• Long Covid and ME/CFS cause around 60–73 billion euros in damage. In Germany alone!
• Lost earnings, health insurance benefits, care costs, early retirement, employer losses
• And let's not forget all those affected who will never again be able to contribute what they used to.

ME/CFS now accounts for the largest share, as the waves of long Covid have subsided, but ME/CFS cases continue to rise.
So things are not getting better. They are getting worse.

60 billion? Where's my share?

Maybe you feel the same way I do and are asking yourself:
Huh? 60 billion euros?
Distributed among around 650,000 sufferers in Germany in Deutschland – that would be an average of almost 97,000 euros per person per year..
So... where's my share, please?

I, for example, have never been on sick leave as a self-employed person.
I don't get a pension, rehabilitation, or care.
I never go to the doctor because of ME/CFS.

Officially, I cost the state nothing.
But if you take a closer look, it looks different:

I work less.
I pay less taxes.
I can hardly support my parents.
I can't do any volunteer work, lead any projects, or give away my creativity.

I'm here – but I'm no longer a full member of this society.
And that costs money. Not directly through social benefits – but indirectly, day after day.

Many people feel the same way.
The invisible ones in the statistics.
The sick without a diagnosis.
The silent ones in the system.

No plan, but billions in losses

So if ME/CFS costs so much every year, wouldn't it make sense, purely from a mathematical point of view, to invest a few million and ask:

What exactly is it? And how can it be treated?

Because currently there is no therapy. No medication. No structure.
At best, there are a few dedicated doctors, a few NGOs—and a lot of exhausted people who inform themselves, network, and somehow keep their heads above water. (Often while lying down.)

Instead, we continue to pay every year. Even more.
Because every year, new cases are added.
And with each year, the costs rise.

Research costs money—but illness costs more

What if we said:

We will invest $100 million a year in real research:

• For better diagnostics
• For targeted therapies
• For preventive measures
• For education in medical schools
• For real care

That would be about one six-hundredth of what the disease already costs us.
Research would not just be compassion in lab coats.
It would be economic common sense! A completely logical cost-benefit calculation.

And yet – almost nothing happens.

Conclusion: Research instead of denial

ME/CFS is a disease that takes people's lives, but does not let them die.
And it does so every year – for many decades.
At the same time, it costs billions, takes away manpower, creativity, relationships, and futures.

And yet society does almost nothing.

Instead, we pay. Silently. Every year, all over again.
Without hope. Without strategy. Without meaning.

The way forward is clear:
Understand instead of suppress.
Research instead of appease.
Act instead of accept.

So come on: Get out your calculators. And this time, please don't press “Ignore.”

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Note
The figures cited in this article are taken from the report „The Rising Cost of Long COVID and ME/CFS in Germany“, published in May 2025 by the ME/CFS Research Foundation in collaboration with Risklayer and other research partners.

The report was presented at the ME/CFS Conference 2025 in Berlin and is based on model calculations of disease progression and economic impacts.