Kurpfalzglück | Visibility for ME/CFS. Now.

A man lies quietly in bed with his eyes closed, while behind him two people hold up a protest poster with the words "Make ME/CFS visible". Next to it is the slogan "Visibility for ME/CFS. Now." and the Kurpfalzglück logo
View my current status (as of September 2026)
🧓Degree of care
PG 4
Since 05.2021
♿Severely disabled
100 %
Since 06.2021
🛏️Bedriddenness
100%
Complete

🧠 Cognitive functions

🧠 Concentration

09.2026
Before: 2/10
Stimulus-response, no focus
Current: 5/10
Simple activities for a short time

💭 Thinking

09.2026
Before: 2/10
Reaction without reflection
Current: 7/10
Longer thinking distances possible

📖 Read

09.2026
Before: 2/10
Individual words
Current: 5/10
Simple texts section by section

💬 Communication

🗣️ Speak

09.2026
Before: 2/10
Single words per hour
Current: 3/10
Very short sentences with difficulty

🎧 Listening

09.2026
Before: 2/10
Individual sounds possible
Current: 3/10
A few seconds of listening

⌨️ Writing

09.2026
Before: 2/10
Individual characters or words
Current: 5/10
Short messages possible

🏃 Activities

🍽️ Nutrition

09.2026
Before: 2/10
Liquid food or small bites
Current: 9/10
Minor restrictions when eating

📺 Television

09.2026
Before: 2/10
Seeing by the second possible
Current: 4/10
Very short clips with a pause
  • I am back!

    My condition with ME/CFS is much better. My personal update about everyday life, friendship, and research – and a hopeful outlook for the future.

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  • Time of change

    Big apologies – but I haven't heard from myself in a long time. A lot has changed since my last post at Easter. First of all: My parents and I moved at the end of May. From the loud and hot Mannheim city center to a quiet location on the edge of the fields in tranquil Brühl. The municipality borders directly on the south of Mannheim and…

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  • Successful Easter surprise

    The Easter Bunny hopped by my place this morning too ;-). I wish you all a happy Easter. Many thanks at the same time to everyone who „gifted“ me with good wishes and thought of me. The Hintermoos racing team. The best surprise came shortly before the holidays from my old ski buddy Johannes from Düsseldorf, with whom I shared our…

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  • Changing times

    Hello dear blog readers, yesterday was the state election in Baden-Württemberg. I have been following the developments over the past few weeks and cast my vote by postal ballot. I am a little proud that I managed to keep the secrecy of the ballot: I made the crosses on my own and also sealed the envelope myself. The close election result has...

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  • After the firecracker

    New Year's Eve in Mannheim is over and we cleaned up during the night. A new year has begun for me too. What it will bring... ...let's see. I wish you all a Happy New Year 2026 and many new experiences. Cleaning up after the New Year's Eve party done quickly. (Image: City of Mannheim) I had a very surprising...

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  • What moves me at the end of '25

    The year is drawing to a close - a year full of highs and lows for me. First and foremost, I would like to thank you all for: the many good wishesthe donations for my beloved Magicthe financial support that makes this blog possiblethe (sometimes surprising) visitsbut also the sharing of this website and my social media posts. The response...

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  • Constant caregiver changes are stressful

    Hello everyone, Fabian has asked me (his mother) to keep you a little up to date. Unfortunately, he is currently worse than he has been for a long time: he can't eat on his own again, he can hardly talk and any loud noises bother him. Even reading is not possible at the moment - he looks at photos in very small doses. After...

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  • Guest article by Berit & Tanis

    Hello everyone, unfortunately Fabian is currently feeling worse again, which is why he can't write to you himself. He sends his best wishes and is looking forward to hearing from you again. To keep the website up and running, Fabi has asked us to fill it with a little life. We, that's Tanis...

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  • ME/CFS and the setbacks

    Unfortunately another setback

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  • Everyday life with ME/CFS: Between nurse no. 17, clinic and hope

    Four rescuers, a sling, stairs full of effort. A view of a clinic visit with ME/CFS.

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