̷L̷o̷r̷e̷n̷z̷ ̷
@restthingever.bsky.social
formerly{{Passionate Software Developer. Guitarist, singer, songwriter. Foodie and traveller}}. Lover of Art Déco, geometry & Sci-Fi.
Struggling with ME/CFS since 2020. Currently at Bell 40.
Based in 🇨🇭
#MECFS #pwME #MyalgicEncephalomyelitis
Struggling with ME/CFS since 2020. Currently at Bell 40.
Based in 🇨🇭
#MECFS #pwME #MyalgicEncephalomyelitis
#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.
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.
May 13, 2025 at 2:21 AM
#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.
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.
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
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
May 12, 2025 at 6:40 PM
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
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
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
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
April 28, 2025 at 7:13 AM
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
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
I’m considering making a couple of these… some good ol’ 2000s humour 😆
#mecfs #longcovid #chronicillnesshumour #humourdespitetumour
#mecfs #longcovid #chronicillnesshumour #humourdespitetumour
March 5, 2025 at 3:43 PM
I’m considering making a couple of these… some good ol’ 2000s humour 😆
#mecfs #longcovid #chronicillnesshumour #humourdespitetumour
#mecfs #longcovid #chronicillnesshumour #humourdespitetumour
“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...
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...
February 23, 2025 at 5:59 PM
“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...
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...
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
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
February 23, 2025 at 7:08 AM
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
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
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“
December 4, 2024 at 3:28 PM
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“
An example of calm-mongering:
December 4, 2024 at 3:24 PM
An example of calm-mongering:
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
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
November 30, 2024 at 3:27 PM
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
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
This is fantastic! Today, on 25-Nov-2024, Wikipedia (English) has #MECFS as featured article!
🥳
en.m.wikipedia.org/wiki/Main_Page
🥳
en.m.wikipedia.org/wiki/Main_Page
November 25, 2024 at 2:11 PM
This is fantastic! Today, on 25-Nov-2024, Wikipedia (English) has #MECFS as featured article!
🥳
en.m.wikipedia.org/wiki/Main_Page
🥳
en.m.wikipedia.org/wiki/Main_Page
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
Dr Nick: “We found traces of every disease known to man in your body and discovered 5 new diseases”
#ChronicIllnessHumor
November 23, 2024 at 10:07 AM
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
Dr Nick: “We found traces of every disease known to man in your body and discovered 5 new diseases”
#ChronicIllnessHumor
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)
Unfortunately, it’s often quite the opposite: once the floodgates are open… 🫠
(OC: image generated with AI by yours truly)
November 23, 2024 at 9:56 AM
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)
Unfortunately, it’s often quite the opposite: once the floodgates are open… 🫠
(OC: image generated with AI by yours truly)
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
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
November 22, 2024 at 6:14 PM
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
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
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
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
November 16, 2024 at 7:34 PM
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’ 😷 😆
Accommodations: venue 10mins from home, seated, ear plugs, covered eyes for half the show.
I disguised as ‘the lone masker’ 😷 😆
November 12, 2024 at 10:23 PM
Huge disappointment… I would give zero stars if I could!
#HumourDespiteTumour #PEM #PostExertionalMalaise #ME #MEAwareness
#HumourDespiteTumour #PEM #PostExertionalMalaise #ME #MEAwareness
May 14, 2024 at 3:38 PM
Huge disappointment… I would give zero stars if I could!
#HumourDespiteTumour #PEM #PostExertionalMalaise #ME #MEAwareness
#HumourDespiteTumour #PEM #PostExertionalMalaise #ME #MEAwareness
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
#BaseRateFallacy #FalseBalance
#MECFS #ChronicIllness #LongCovid
October 6, 2023 at 11:10 AM
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
#BaseRateFallacy #FalseBalance
#MECFS #ChronicIllness #LongCovid
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.
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.
October 4, 2023 at 9:02 PM
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.
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.
I know that I don’t know
October 3, 2023 at 7:46 AM
I know that I don’t know
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)
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)
October 2, 2023 at 8:03 AM
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)
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)