Jonas

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Jonas had already been bedridden for eight years when he wanted to tell us something. Over the course of several days, we communicated with him through questions from us and tapping responses from him. He wanted to know why no doctor was interested in him and why nobody could help him. And he wanted us to take action so that this would finally happen. And he wanted us to go public with this, if that would help.
It also became clear to me that Jonas is such an extreme case that he moves the public more than the many ME/CFS sufferers who are less severely affected and whose serious illness is therefore not apparent. Just like my wife Andrea, who has been unable to work for over 25 years due to ME/CFS. And who can no longer spend the winters in Germany without becoming a care case herself. But she just looks ‘perfectly normal’ at first glance. That’s a major problem for most ME/CFS sufferers. But not for Jonas. No one doubts any longer that he is very seriously ill. It’s always a balancing act deciding what to make public and what not to. Mainly because I can’t ask him. He’s far too unwell for that.

Publications about Jonas

These are the key publications since 2023:

Badische Zeitung 2023
Klopfzeichen von Jonas
also at Martin Rücker

By Martin Rücker, a major double-page spread in Südbaden’s daily newspaper; a brilliant journalist. Also featured in many other media outlets, including taz, RiffReporter, Südkurier – sorry folks, it’s all in German.

   Jonas – (no) life
   with ME/CFS
   PDF brochure (English)

An 18-page document covering all aspects of Jonas’s illness (written by Just ME). Includes a table of contents so you can quickly find what interests you.

   Hirschhausen film
   2023 (from 26:00)
   und in English

Title: ‘What Remains of Corona’, July 2023, featuring Jonas and his family from minute 26 onwards

   ‘Roberta uncovers’
   ME/CFS patient Jonas
   (Nov. 2025, German)

Featuring a re-enacted scene with a hospital psychiatrist (at 00:51, in German)

Plothouse podcast by Lottie Mellahn = Visa Vie, Episode 16: Buried Alive – No Life with ME/CFS

   Podcast PLOT HOUSE
   Buried alive (German)
   (May 2025)

Lottie Mellahn, also known as Visa Vie, suffers from ME/CFS herself. In episode 16, she talks at length for almost three hours about ME/CFS, discussing four severe cases, including a segment of around 45 minutes on Jonas after the first 44 minutes. Following the four cases, many callers have a brief chance to speak. Hearing these accounts of so many utterly desperate individual stories moved me to tears. And I’ve been through enough myself. Her fundraising campaign raised €370,000!

Freiburg Lying-Down Protest: Speech by Just ME (icke) 2024

   Demo Freiburg 2024
   My speech: Just ME
   + Manuscript (English)

In 15 minutes, I said everything that matters to me. I translated the manuscript.

What good is that to Jonas?

In December, I was at the hospital with Jonas. The specialist in charge of his wound care came round and told us excitedly that she’d heard about Jonas on her favourite podcast the day before (PLOT HOUSE – Episode 16). Afterwards, I said to Jonas, “Blimey, all that effort with media campaigns has really paid off for you!” Because, of course, he receives better support when carers can properly understand a patient’s background story. I also know that some of those who have helped us greatly in government departments and organisations over the last few years saw reports about Jonas or other ME/CFS cases.
And only if cases like Jonas continue to be reported on will anything change. There are thousands like him, in Germany alone! And surely where you live too.

Communication

JOS = Jonas Operating System. These are query lists that we use to communicate with Jonas.

Jonas takes a keen interest in the world around him, covering a wide range of topics. This includes serious issues such as the war in Ukraine. He was probably one of the best-informed voters when, in 2024, he cast his votes for the local, state and European elections all at once, with Julian’s help. He had dozens of candidates and their manifestos explained to him and distributed his votes among various candidates. Since November 2025, however, he has been feeling so unwell due to a hole in his stomach that his communication now almost exclusively concerns his care (as of 08/04/2026). – Except for the state elections in Baden-Württemberg. Julian gave him a detailed account of those, and he voted. Amazing. – We so very much hope that he recovers soon and that the progress painstakingly made over the last three years returns. The communication with Jonas is described in more detail below.

JOS = Jonas Operating System. When Jonas wants something, he lets us know by raising his hand or by making a grunting sound that we can hear through the baby monitor. If we don’t already have an idea of what he wants, the first question we ask him is whether it’s about something to do with his care or something else. This has led to the development of a questioning system based on lists of yes/no choices. If he gives a tapping signal with his hand – which is often just a slight twitch of the hand – we ask further questions from that list. The questioning scheme is displayed on the wall in Jonas’s room. If you’ve run out of ideas, you move on to lists such as the W-questions (what? when? who? …) or the letter groups: I go through them from “A to E”, “F to K” and so on. Once the letter group has been decided, I then go through the individual letters until I eventually work out the word he wants to say. I often come up with the right word once I know the first three letters. And with that word as a clue, I (hopefully) think of further sensible questions about what Jonas might mean. Jonas has all these lists of questions and patterns in his head – after all, they are his own creations, which Julian helped him put down on paper during weeks of question-and-answer sessions. You work through individual lists from top to bottom or from left to right.

Hieroglyphs?

The question-and-answer method using tapping signals has the disadvantage that it can be very tiring for Jonas and for us when it comes to more complicated matters. Although Jonas can usually look at things for a couple of hours in the morning (as of autumn 2025), as soon as there is movement—for example, if someone walks past—he closes his eyes; it’s too tiring for him. The Lego board assigns fields on the board to the question lists. Jonas is given the board and a supply of shapes placed on his chest. Each shape represents a number. He can feel everything, so he doesn’t need to look at anything.
The Lego board is only for matters that do not involve a direct care request from Jonas, but rather the points ‘say something’ or ‘say something more precisely’.
Lego brick = 1, cube = 2, round glass brick = 3, square glass brick = 4, shell = 5, snail shell = 6 (shapes for 5 and 6 were not used in the accompanying image)
A penny placed under or on top of a shape = +6, so e.g. a Lego brick with a penny is a 7 (not shown in the image).
Top row = standard question list – currently, a maximum of five levels of detail is conceivable, so five fields side by side would suffice.
Bottom row = further details regarding the matter, via the W-questions (e.g. “how long?”, possibly several W-questions) or via cue words that are spelled out.

In detail

Here is the explanation of the image:
The top-left box, which says ‘say something more specific’, is empty. This means that the ‘say something more specific’ list is not being used. It’s about ‘saying something’.
In the box next to it is a Lego brick. This represents 1. The first ‘module’ from the next relevant “list” is ‘Recent & Current’ .
One box further to the right is a dice. This stands for 2. The supplementary list, which now appears next to “Recent & Current”, is not visible in the photo. There, “yesterday” is the second term from the top.
In the bottom row, on the left, is a yellow dice = 2 = Spelling. (The fact that the cube shows a dot is irrelevant.) In the fields to the right of this, there are two shapes in each field. The rule is always: first use the left shape, then the right one, or first the top one, then the bottom one. The two Lego bricks at the bottom of the second field from the left are labelled: 1 = letter group A to E, 1 = A. In the square next to it, a round glass brick = 3 = letter group L to Q, cube = 2 = M. Then there is a gap. Then a square glass brick = 4 = group R, S, T and a round glass brick = 3 = T. Then two more Lego bricks = A.
In a third ‘row’, on the left is a round glass brick = 3 = L to Q and a square glass brick underneath = 4 = the letter 0 (as in the word ‘ohne’). Then a large gap, then a square glass brick = 4 = R, S, T and a round glass brick underneath = 3 = T.
In total: Say something, Recent & Current, yesterday. Note: On Ta o T – That was enough for us. On days when he doesn’t go to the toilet, I’ve been washing his back ever since. Until then, that had always happened whilst he was on the toilet. As a result, it doesn’t take as long now, is less tiring for him, and he lies on his side for a while every day, rather than just every other day..

Typical of severe cases

Jonas isn’t the only one who develops his own ways of communicating; inevitably, everyone who loses the ability to speak due to ME/CFS ends up doing this in some way. There are videos online that provide striking evidence of this. Often, it is agreed-upon symbols that the hands of the most severely ill convey. Jonas, too, often expresses himself through hand gestures that we have come to recognise.

Music

Stay heavy

From autumn 2015 to spring 2016, Jonas was feeling so well at times that we all thought he would soon be out of his hospital bed. He was already making travel plans and listening to music for hours on end. Often very loudly, and sometimes he would rock out so much that his hospital bed would shake. That’s when this photo was taken, which is why Dragomir had to play the electric guitar in the music video at this point, with the lyrics “You’ll get out of bed again“. The photo symbolises his unbroken zest for life – he’s a “great guy”! – Unfortunately, his condition soon took a turn for the worse again. For years he couldn’t listen to any music at all, until…

1 track a day since 2023

A few years ago, his extreme sensitivity to noise eased off again and he wanted to listen to music once more, but only one track a day! He let us know what he wanted to hear by tapping his hands. Once, he wanted a very specific track by Benjamin Francis Leftwich, from a particular album – in a specific playlist on his 10-year-old Spotify account – and by the time I’d managed to track it all down, three hours had gone by. And then – finally – four minutes of ethereal sounds. It seemed to me as though Jonas was soaking up every single note and comparing it with his 10-year-old memories.
It actually brought tears to my eyes. Because I was so impressed by this incredible willpower and positive outlook on life – despite all those dark years trapped inside his own body!
Unfortunately, he hasn’t been able to hear anything since autumn 2025 because his condition has deteriorated so much. Hopefully he’ll be able to take it up again soon.

Dear doctors

I’ll get formal for a moment and switch to the formal ‘you’ (‘Sie’ in German). We need you. Urgently! Without our two wonderful GPs, Jonas would probably no longer be alive. Without doctors, there will be no proper medical care for ME/CFS sufferers. But when I accompany Jonas to hospital because his care is so difficult, I’m still usually seen as a madman and Jonas as severely depressed, wanting to shut himself off from the world as a result. Having read the last few paragraphs, do you still believe that?
Then please take a moment to reflect and reconsider your attitude, because this is a matter of survival for many millions of patients worldwide. And if you still don’t believe me, then please listen and watch as a renowned consultant explains it all: https://www.youtube.com/watch?v=EgsJWvZJr3I (sorry, only in German)
Incidentally, it has long been known that highly intelligent scientists – the elite of their profession – often cling to false beliefs, no matter how much they are disproved; this is known as Planck’s principle, see https://en.wikipedia.org/wiki/Planck’s_principle.

Jonas

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Publications about Jonas

Badische Zeitung 2023 Klopfzeichen von Jonas also at Martin Rücker

Jonas – (no) life with ME/CFS PDF brochure (English)

Hirschhausen film 2023 (from 26:00) und in English

‘Roberta uncovers’ ME/CFS patient Jonas (Nov. 2025, German)

Podcast PLOT HOUSE Buried alive (German) (May 2025)

Demo Freiburg 2024 My speech: Just ME + Manuscript (English)

What good is that to Jonas?

Communication

Music

Dear doctors

Badische Zeitung 2023
Klopfzeichen von Jonas
also at Martin Rücker

Jonas – (no) life
with ME/CFS
PDF brochure (English)

Hirschhausen film
2023 (from 26:00)
und in English

‘Roberta uncovers’
ME/CFS patient Jonas
(Nov. 2025, German)

Podcast PLOT HOUSE
Buried alive (German)
(May 2025)

Demo Freiburg 2024
My speech: Just ME
+ Manuscript (English)