Post-exertional malaise (PEM) - the No. 1 symptom of ME/CFS

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First of all a huge thank you for the many messages that have reached me in recent weeks. Your feedback means a lot to me. Unfortunately, I haven't been able to reply to everything yet - but I'm incredibly happy to hear from you.

I would like to start this article with a little educational work on one of the most important symptoms of ME/CFS, the so-called Post-Exertional Malaise (PEM).

PEM is not an expression of normal exhaustion, but a pathological reaction to exertion - physical, mental or emotional.

Working with the handbrake on

I really enjoy working on Kurpfalzglück. Every idea, every design, every piece of feedback means a lot to me. At the same time, I have to constantly slow myself down. Two-factor authentication, SMS codes, app notifications, formatting, etc. take a lot of energy.

Unfortunately, the illness hasn't gone away - on the contrary: it makes itself reliably noticeable as soon as I work on something for a few minutes too long.

Then comes the receipt. Sometimes directly. Sometimes with a delay of several hours or days. I am currently experiencing "brain fog", headaches, muscle twitching, excessive sensitivity to noise, accelerated pulse and severe exhaustion.

What is often perceived from the outside as "he's just tired for a moment" is actually one of the Cardinal symptoms of ME/CFS. The so-called Post-Exertional Malaise (PEM).

PEM is a unique and distressing feature of ME/CFS, where even minor physical or mental exertion can cause a significant, often delayed, worsening of symptoms - over hours, days, weeks or months.

Komaroff & Lipkin, Nature Reviews Neurology, 2021

PEM is hard to understand, difficult to grasp - and that is precisely why it is so dangerous. It not only restricts the physical resilience of those of us affected, but also makes even everyday life more difficult, enjoyable activities - such as a conversation, listening to music or writing - become a potential risk. A massive loss of quality of life.

Media attention at last - "This is a state failure."

With this sentence Karl Lauterbach SPIEGEL interview from July 17, 2025 in a nutshell what those affected by ME/CFS have been experiencing for years: A Systematic, structural failure - politically, medically and socially.

Up to 650,000 people in Germany are affected. Many of them young. Many of them female. Many seriously ill - but without help, without care, without prospects.

Lauterbach clearly recognizes the dramatic situation for the first time: It needs Specialized contact points, more research and better medical training.

I have created a longer summary and evaluation of the interview on LinkedIn: LinkedIn post

Visibility sought - and hosted by the Internet

I thought I'd do what people do nowadays: build up social media, gain reach, make ME/CFS more visible. Kurpfalzglück now everywhere where people scroll instead of talk. It would be great if you followed me there:

• LinkedIn
• Xing
• Facebook
• Instagram
• X (formerly Twitter)

But as soon as we went online, the big digital frown appeared:

• Facebook and Instagram want to delete me.
  The reason? Copyright infringement. (Although all the images are mine or AI-generated - did I overload the algorithm?)
• Meta advertising account: blocked.
  Allegedly "suspicious payment activity". Me: seriously ill. Meta: "You seem suspiciously active."
• Google company profile: deactivated.
  Now I'm official: "Provider of amusement machines in Mannheim." That's kind of true. I regularly talk to bots and algorithms.

Am I really such a bad person?

Or is it just damn hard to be taken seriously as a chronically ill activist in the digital world?

How you can help

To be honest: unfortunately, I can't do it on my own. If you know your way around social media, advertising, Google or Meta or simply want to be part of Kurpfalzglück to become:

Get in touch: I need help. And visibility needs people.

• WhatsApp
• Mail

What else has happened

Even if my energy is limited - a lot has happened behind the scenes:

🆕 New home page image & slogan
The homepage has been redesigned - with an expressive image and a new, powerful slogan: "Making ME/CFS visible. Now."

🔗 Sharing made easy
New social media buttons make it possible, Blog posts and content even easier to share. Because visibility is created by people like you.

⚙️ Technology & Legal
In the last few weeks, I have revised the privacy policy, updated the cookie settings and improved the site performance, especially on mobile devices. Things that run in the background - but cost a lot of time, energy and unfortunately also money.

❤️ New donation page - clearer and more targeted
On the newly designed Donation page you have now two possibilities to help:

1. Support Kurpfalzglück directly
   Some expenses have been incurred recently - for example for Printing costs, plugin licenses, hosting, tools etc. Your donation helps me to bear the financial burden - and to continue to make content for ME/CFS visible.
2. Donate to the ME/CFS Research Foundation
   If you prefer to support independent research, you can also make a direct charitable donation to the ME/CFS Research Foundation donate.

What should I write about next?

You helped decide that ME/CFS should become visible - now you can also have a say in what I write about next. Which topic are you interested in?

If you have any feedback, would like to share your own experiences with ME/CFS or just want to say hello, feel free to write to me via the comments function or in person, regardless of the channel.

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