Timo Strotmann

Tech Enthusiast - Software Engineer -

[Timo Strotmann @TweetingTimo]

Persönliche Einschätzung: Die Symptomatik ist bei vielen ME und LongCovid Patienten schwankend. Wenn ich jetzt ein Medikament gebe welches über Monate eingeschlichen wird ist die Wahrscheinlichkeit einfach sehr groß das sich in der Zeit der Zustand verändert. Da grade in schlechteren Phasen neue Medikamente getestet werden erhöht nochmal die Wahrscheinlichkeit das es zu einer Verbesserung kommt die aber auch einfach dem natürlichen Verlauf geschuldet sein kann.

[Timo Strotmann @TweetingTimo]

@steipete Like it, but unfortunately still far away from reality.

I‘m suffering from ME/CFS, a common and severe neurological disease which I believe will unfortunately not be solved by AI in my live time.

To cure diseases we need much more than just a better AI.

[Timo Strotmann @TweetingTimo]

@verenabee @HumanManifold Bin ich bei dir, ich wollte nur wissen ob die Orgas das generell aus dem Schirm haben insbesondere wegen der anstehenden NKLM 3.0

[Timo Strotmann @TweetingTimo]

Weiß jemand, ob eine deutsche ME/CFS-Patientenorganisation aktuell daran arbeitet, ME/CFS fest im Medizinstudium zu verankern?

[Timo Strotmann @TweetingTimo]

@verenabee @HumanManifold Ich würde eigentlich erwarten das die DG ME/CFS die auch schon mit der DGN in Kontakt ist hier in den lead geht.

[Timo Strotmann @TweetingTimo]

@Magnusora FND could be included as well. I’m not an expert, but from what I’ve seen, prevalence estimates vary quite widely, ranging from 0.05% to 1.6%.

[Timo Strotmann @TweetingTimo]

I just spoke to an 8th-semester medical student.

Not a SINGLE class on ME/CFS.

A neurological disease affecting potentially 70 MILLION people worldwide, yet future doctors aren’t even taught about it.

This isn’t just an educational gap. It’s a medical scandal.

[Timo Strotmann @TweetingTimo]

@RANfromChester I’m from Germany and it was a German med student.

[Timo Strotmann @TweetingTimo]

@docmartin22 Was ME/CFS ever covered during your medical education?

[Timo Strotmann @TweetingTimo]

@malcolmisinhell Good point. But the real message of this infographic is simple:

ME/CFS is a common neurological disease, yet medical students often learn nothing about it.

And this was already a major problem before the pandemic doubled the numbers.

[Timo Strotmann @TweetingTimo]

Fair questions! The WHO estimates 3.1 billion people have headache disorders, including migraines and tension-type headaches.

ME/CFS prevalence estimates range from 0.2–1% (~16–80 million), with the lower estimate predating COVID. MedUni Vienna cites up to 70 million.

These aren’t exact numbers, but they give a good sense of the scale.

And no matter how you look at it, ME/CFS remains one of the most common neurological diseases worldwide.

[Timo Strotmann @TweetingTimo]

@daniel38608 @tink_ina It’s not.

[Timo Strotmann @TweetingTimo]

@SquashedSiren @tink_ina This are the current numbers from Germany:

🇩🇪 657,000 patients
💰 €32.8 BILLION in annual societal costs
📉 0.73% of GDP

And Germany is even after announcing a research program for PAIS only investing 50Mio € per year.

https://t.co/IipfwzoUmv

[Timo Strotmann @TweetingTimo]

Wenn ihr euch mit ME/CFS beschäftigt, dann schaut nicht nur auf die Erkrankung und das unvorstellbare Leid der Betroffenen.

Beschäftigt euch auch mit dem medizinischen Skandal dahinter: jahrzehntelange Stigmatisierung, fehlende Forschung und eine katastrophale Versorgung.

Das darf nicht länger ignoriert werden.

[Timo Strotmann @TweetingTimo]

@spider_uli Niemals

[Timo Strotmann @TweetingTimo]

With mild ME/CFS, I was finally able to live again:

❤️ Marry the woman of my dreams
💻 Work part-time
🦁 Go to the zoo with my godchild
🎁 Attend family celebrations
🛒 Go grocery shopping
🚗 Drive short distances

It was a life again. Not a easy one, but a beautiful one.

And now, not knowing whether I will ever get that life back is tearing me apart. 💔

[Timo Strotmann @TweetingTimo]

@pi_vie1 Das macht Hoffnung ❤️

[Timo Strotmann @TweetingTimo]

For over a year, I hadn’t experienced a severe crash, barely had any PEM, and had finally reached mild ME/CFS.

After a recent infection, I first thought I was recovering quickly. But now it feels like severe PEM is coming back.

I’d be lying if I said I wasn’t scared. 💔

[Timo Strotmann @TweetingTimo]

Medical breakthroughs amaze me.

Yet over 70 million people with ME/CFS are still waiting for answers.

For 1.5 years, I slept like a baby. Now, one crash later, sleep is suddenly impossible. I need strong medication just to get a few hours of rest.

What is going on in my body?

[nature @Nature]

A powerful gene-editing technique has been used to edit DNA directly in a person’s body — the first known instance of such a treatment.
https://t.co/hoSR2fXR2V

[Timo Strotmann @TweetingTimo]

Gibt es zu dem Vorgehen eigentlich irgendeine weitere Information? Gibt es z.B. eine Stellungnahme von Michael Linden zu den schwerwiegenden Anschuldigungen?

[Dr. Daniel Loy @loy_daniel_de]

1/4 Neues zum #MECFS-Kapitel im Verhaltenstherapie-Handbuch: Mitautor Volker Köllner erklärt nun auf LinkedIn, Herausgeber Martin Linden habe die strittigen Passagen nachträglich und ohne Rücksprache eingefügt. Das wirft weiterhin Fragen auf.
@springer1842 @SpringerNature

[Timo Strotmann @TweetingTimo]

@chimprescuer Either a stomach bug or food poisoning. I honestly don’t know.