iiinova — where your digital self keeps evolving

̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 11/10/2026

#MECFS #pwME #POTS #LongCovid How do you handle changes in Atmospheric/Barometric Pressure? How do you feel them? Do you adjust your pacing strategy on impending ‘drops’?

Graph that shows a drop in atmospheric pressure from about 1023 millibar to 1014 over 36 hours

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 11/10/2026

Das ist mMn genau das falsche Beispiel! KI in ihrer heutigen Gestalt ist nicht deterministisch (gleicher input liefert unterschiedlicher output) — eine Konkrete Antwort der KI folgt also keinem mathematischen Modell, sie ist rein Wahrscheinlichkeits- bzw Datengetrieben www.woz.ch/2639/ki-und-...

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 10/10/2026

Unser täglich Brot gib uns heute 😆 Frühstück als sog. „mild” #MECFS Betroffener… Brauch ich das alles — bzw immer noch? 🤷‍♂️ Es geht besser als vor ein paar Jahren, Medis (antivirals, etc) haben def dazu beigetragen. „Weglassen und beobachten“ ist nicht so einfach— zu viele Faktoren, Langzeitwirkung

About 15 pills lying on the palm of a hand

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 07/04/2026

After all these years with #MECFS I’m still extremely annoyed at people’s (even HCP!) inability/willingness to differentiate between fatigue as a symptom and CFS. They are not synonymous! Their prevalence is wildly different! Image created by the lovely folks at @sgme.bsky.social

A Venn diagram that shows 3 almost concentric circles.

A very large circle represents the symptom fatigue. A much smaller circle inside the large circle represents the illness, CFS. A smaller circle inside the CFS circle represents the illness ME. A part of the ME circle is hanging outside the “symptom fatigue” big circle.

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 19/03/2026

In der Stadt Zürich gibt es zB die Webseite “Züri wie neu”. Gemeldete Mülldeponien werden in der Regel binnen 24h abgeholt (!)

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 13/05/2025

#MECFS & #LongCovid have cost Germany 63.1 Billion Euros in 2024 — that’s roughly 1.5% (!) of its GDP 🤯 Today is #worldMEday — this cruel disease affects millions of people worldwide, who suffer both from its horrible symptoms and the disbelief from society and even medical professionals.

Annual costs of Long COVID and ME/CFS in Germany (average of four models), 2020-2024 (in billions of Euros).

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 12/05/2025

Heute ist #MEawarenessday Als sog. „mild“ Betroffener bin ich noch mobil und kann Teilzeit arbeiten. Ein Privileg, von dem nur schwerer Betroffene nur Träumen können. Trotzdem ist kaum etwas in meinem Leben so wie früher, bevor #MECFS es kaperte. #geMEinsam #MillionsMissing #LightUpTheNight4ME

Zwei Füsse in Socken. Eine Socke ist rot und trägt die Aufschrift Millions Missing, die andere ist blau und trägt den Schriftzug light up the night.

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 28/04/2025

I recently caught this Netflix’ “The Residence” and sent it to my former EE classmates.. we had a good laugh 😆 In Switzerland, “engineer” is a (mostly) protected title, but its ‘social recognition’ (respect) is almost non-existent nowhere near doctor/attorney —but definitely not a ‘generic’ term

Photo of a TV showing an episode from the show “The Residence” showing Giancarlo Esposito stating: “I’m sending up an engineer to fix the toilet”

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 05/03/2025

I’m considering making a couple of these… some good ol’ 2000s humour 😆 #mecfs #longcovid #chronicillnesshumour #humourdespitetumour

A T-Shirt with the frase: “A virus ruined my life and all I got was this lousy T-shirt. ME/CFS”

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 23/02/2025

“Risiko für #LongCovid hat sich deutlich verringert” Von 6-8% auf “wahrscheinlich” 1-2% — Und zitieren eine Studie aus Cambridge… welche zum Schluss kommt, dass die W’keit sich von 27-34% auf 11-14% verringert hat. 🤷‍♂️ Hab ich was verpasst? science.orf.at/stories/3228... www.mdr.de/wissen/mediz...

Ergebnissen der "Virus Watch"-Studie des University College London zufolge weisen die jüngeren Omikron-Untervarianten ähnliche Wahrscheinlichkeiten für
Langzeitsymptome auf wie andere akute Atemwegserkrankungen. Omikron ist die seit Anfang 2022 weltweit dominierende Corona-Variante.
In der ersten Infektionswelle der Pandemie habe das Risiko für mehr als zwölf Wochen andauernde Beschwerden
- Post Covid genannt - bei etwa sechs bis acht Prozent gelegen, sagt Andreas Stallmach vom Universitätsklinikum Jena (UKJ). Inzwischen liege es wahrscheinlich bei ein bis zwei Prozent.

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 23/02/2025

You know your day is going to be just great when you wake up like this… /s This is right after having slept about 10 hours. Classic #PostExertionalMalaise, I guess 🥴🫠 What this measurement doesn’t show is the intense #ChronicPain I’m feeling burning in every muscle. #MECFS #LongCovid #PEM #PENE

A screenshot from the welltory app, which measures HRV.
The measurement was takn at 8am and shows SDNN of 14ms, stress level of 99% and Energy of 7%, yet health as “100% resilient”

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 04/12/2024

Calm-mongering interferes with the rational development of a risk management strategy, as the mere mention of plausible downsides becomes subjected to critique. This is no way to manage risk during a crisis. Fear in response to a real threat, as we mentioned before, is rational“

In a dynamic environment, the ability to assess and act on threats quickly is key to creating an effective risk management framework. The current pandemic response worldwide has been so focused on damping down a sense of panic that it has no means of accurately conveying risk.
Lulling the public into a false sense of security about an ongoing pandemic is an irresponsible approach to public health. In an emergent crisis, the public deserves to know the truth about potential risks.
Calm-mongering is a dangerous tactic, and the virus is its only beneficiary.
The only thing we have to fear is the fear of fear itself.

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 30/11/2024

A minority with a fringe populist opinion gets the same amount of attention as the remaining 99% of science and scientists. It is said the general public prefers ‘easy’ explanations that make them feel safe — but that doesn’t make them any more correct. #mecfs #longcovid #falsebalance

A seesaw in perfect balance with a dozen people on one side, and just one person on the other.
The side with a lot of people on is labelled “MECFS and long Covid are multisystem organic illnesses”. Side with just one person on is labelled “MECFS and long Covid are purely psychosomatic”.

The media is quoted saying “the science is highly contested” and “there is disagreement among scientists”

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 25/11/2024

This is fantastic! Today, on 25-Nov-2024, Wikipedia (English) has #MECFS as featured article! 🥳 en.m.wikipedia.org/wiki/Main_Page

Screenshot from Wikipedia main page on November 25th, 2024 — shows the article about ME/CFS as featured article

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 23/11/2024

This reminds of this scene in the Simpsons where Dr Nick Riviera explains to Mr Burns he is only alive because he has some many diseases that they effectively block each other 😂 Dr Nick: “We found traces of every disease known to man in your body and discovered 5 new diseases” #ChronicIllnessHumor

An excerpt of a Simpsons episode that shows Dr Nick Riviera explaining to Mr Burns he is only alive because he has some many diseases that they block each other. Dr Nick illustrates this with a small model door through which he tries to squeee about a dozen of colorful round plushies that look like viruses with faces and arms. Not a single plushie can get through because they physically block each other.

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 23/11/2024

Sometimes I wish having a #ChronicIllness would at least protect you against other diseases— kind of like a host can only be occupied by one demon at a time 😆 Unfortunately, it’s often quite the opposite: once the floodgates are open… 🫠 (OC: image generated with AI by yours truly)

a human-sized moth-like creature (labeled chronic illness) holding a sick-looking human in its hands. The creature tilts its head towards the camera with open mouth, as if to say with a hissing voice „hands off, this one is mine!“.

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 22/11/2024

Some years ago, I did a pain visualisation exercise and asked Midjourney to illustrate it. This is the result. Even today, this feels quite accurate, although my calves are often where I feel most physical pain, especially during the night and in the early morning. I have #MECFS

An AI generated image that displays a human body that’s dissolving in green smoke while being covered (or rather devoured) by something that looks like a mixture between clinging vines and thick
blood vessels.

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 16/11/2024

As #pwME, I’m confronted with “you mustn’t give up hope” & “you need to tune out the negative thoughts” — to which I vehemently oppose. What are ‘negative thoughts’ to you, are part of my reality, which I need to be able to deal with. That does NOT mean I’ve given up! #MECFS

Stockdale Paradox
You must never confuse faith that you will prevail in the end - which you can never afford to lose --with the discipline to confront the most brutal facts of your current reality, whatever they might be.
Admiral James B. Stockdale

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 12/11/2024

After almost 4 years with #MECFS, I’m currently stable enough to dare going to a Maxïmo Park concert (well, most of it), for which I’m extremely #grateful ♥️♥️ Accommodations: venue 10mins from home, seated, ear plugs, covered eyes for half the show. I disguised as ‘the lone masker’ 😷 😆

Picture of a concert of the band Maximo Park in a mid-sized venue. The lead singer Paul Smith is wearing a white T-shirt with big letters: “No war”. The stage is illuminated with red lighting.

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 06/10/2023

Although I feel the situation has improved in the past 2 years, this little illustration I did still holds true. #BaseRateFallacy #FalseBalance #MECFS #ChronicIllness #LongCovid

A seesaw with many people on one side and just one person on the other. However, the seesaw is in balance and is labeled “the media” and claims “the science is highly contested” and “there is disagreement amongst scientists”.
The crowded side of the seesaw represents those who agree ME/CFS is a multi-system, organic illness. The side with on person claims ME/CFS is purely psychosomatic.

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 04/10/2023

Das war ich, sorglos, im Oktober 2020, 2 Monate bevor ich an #EBV und danach an #MECFS erkrankte. Es war eine 4-Tages Wanderung durch das wunderschöne Tessin. Das ist bis dato meine letzte Wanderung gewesen — nun wenigstens eine schöne Erinnerung ❤️ Eines Tages werde ich dorthin zurückkehren.

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̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · 02/10/2023

Things I learned the hard way before turning 40. The fact that most healthy people don’t see it, cuts two-fold: the implicitness, and the lack of empathy. #MECFS #LongCovid #ChronicIllness (This quote is often falsely attributed to Robin Sharma… its origin is far more ancient)

Image shows a quote attributed to Imam Al-Shafi’i: “Health is a crown that the healthy wear but only the sick can see”

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