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restthingever.bsky.social
̷L̷o̷r̷e̷n̷z̷ ̷
@restthingever.bsky.social
570 followers 730 following 150 posts
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 50.

Based in 🇨🇭

#MECFS #pwME #MyalgicEncephalomyelitis
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restthingever.bsky.social
̷L̷o̷r̷e̷n̷z̷ ̷ @restthingever.bsky.social · Nov 16
Short introduction to my new Bluesky followers — I‘m a Swiss engineer in my 40s, got #MECFS in 2020 from EBV (reactivation?), which ploughed up my life.

Thanks to pacing & antivirals (& luck), I’m currently able to work part-time again, leave the house regularly.

I’m here to support & be supported
restthingever.bsky.social
Wieso kommen Terminerinnerungen (zB von Arztpraxen) per SMS immer genau 24h vorher mit dem Hinweis “Kostenlose Stornierung bis 24h davor”?

Hat schon beinahe ein Hauch Schadenfreude
August 24, 2026 at 7:11 AM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
karin-kelle-herfurth.de
„Für #MECFS fehlt noch weitgehend belastbare biologische Evidenz.“ Solche Aussagen sind längst nicht mehr haltbar.
#DecodeME liefert robuste #Evidenz, dass genetische Variation zum Erkrankungsrisiko beiträgt. Offen ist, welche Varianten, Gene und biologischen Prozesse diesen Zusammenhang vermitteln.
Genetische Evidenz für ME/CFS: Welche biologischen Spuren DecodeME sichtbar macht
DecodeME liefert robuste genetische Evidenz für ME/CFS. Was die Daten zeigen, wo ihre Grenzen liegen und welche Mechanismen noch offen sind.
karin-kelle-herfurth.de
August 20, 2026 at 4:53 PM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
chronicillness.bsky.social
@thepotspostman.bsky.social
@ThePOTSPostman When it comes to chronic illness, people love to say, "Everyone is dealing with something." Sure. But not everyone has to prove what they're dealing with to doctors, employers, insurance companies, relatives and strangers before they're believed.
August 8, 2026 at 2:30 AM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
sagan.bsky.social
There is a cult of ignorance... nurtured by the false notion that democracy means that ‘my ignorance is just as good as your knowledge.’

— Isaac Asimov
June 12, 2026 at 5:00 PM
restthingever.bsky.social
Some years ago, there was a lot of discussion here about #Covid reinfections and cumulative #LongCovid risk.

How has this actually developed?
NTS, there are millions suffering from LC, but are numbers still on the rise? Are we already in the #MassDisablingEvent? Collective #HeadInTheSand 🙈?
June 4, 2026 at 6:31 AM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
neurostingl.bsky.social
Ich hab mit edition a ein Buch über ME/CFS gemacht.

Hoffentlich ist es hilfreich vor allem für jene, wo die Diagnose noch unklar ist.

Normale medizinische Versorgung kann es jedenfalls nicht ersetzen. Darum geht mein Anteil zu 100% an CS Nordlicht der Caritas Socialis.
Cover des Buches.
May 30, 2026 at 6:29 PM
restthingever.bsky.social
When there are recommendations of using off-label medication like SSRIs to help with symptoms of #MECFS or #LongCovid, this is NOT psychologizing!

These substances are used to change brain chemistry, which can have positive effects e.g. in pain management.SSRIs are not “antidepressants” by design.
April 8, 2026 at 9:11 AM
restthingever.bsky.social
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.
April 7, 2026 at 7:59 AM
restthingever.bsky.social
Super interesting — I’m part of the 37 club — spot on the age where I got sick
March 24, 2026 at 9:42 PM
restthingever.bsky.social
In der Stadt Zürich gibt es zB die Webseite “Züri wie neu”. Gemeldete Mülldeponien werden in der Regel binnen 24h abgeholt (!)
March 19, 2026 at 9:17 AM
restthingever.bsky.social
Super Beitrag von @maithinkx.bsky.social über #MECFS — lange ersehnt von uns Betroffenen!
Danke, liebes Maithink Team, dass ihr euch diesem Thema widmet und es so sorgfältig, differenziert und wie gewohnt *messerscharf* beleuchtet.

www.zdf.de/play/shows/m...
Long Covid & ME/CFS – Blackbox der Pandemie
Die Pandemie ist für die meisten vorbei, aber für über Hunderttausende in Deutschland ist sie es nicht. Sie leiden unter den Spätfolgen ihrer Corona-Infektion.
www.zdf.de
March 15, 2026 at 12:52 PM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
chronicillness.bsky.social
1 - pic of woman with face on hand 'i have cancer' and then there are speech bubbles from other people saying 'you're so strong,' 'is there anything i can do to help you?,' 'your health comes first,' 'don't push yourself' 2 - pic of same woman with face on hand but this time looking sad 'i have a chronic illness' and speech bubbles from other people say 'stop being lazy,' 'are you doing this for attention?,' 'try harder,' and 'everyone gets tired' mybodyistryingtokillme.com
March 14, 2026 at 12:15 PM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
danihaenni.eurosky.social
"SARS-CoV-2 ist ein systemischer Angreifer, der bleibende Schäden in fast jedem Organsystem hinterlässt – bei Kindern, Erwachsenen, bei einmaliger und bei wiederholter Infektion. Prävention bleibt der beste Schutz. Die Wissenschaft spricht eine klare Sprache."

#CovidIsAirborne #CovidIsNotOver
March 15, 2026 at 6:56 AM
restthingever.bsky.social
Charming essay by Hermione Hoby about her struggle with #MECFS over the years

www.theguardian.com/society/2026...
My maddening battle with chronic fatigue syndrome: ‘On my worst days, it feels almost demonic’
The long read: I suffered with my mystery illness for decades before gaining a diagnosis. Could retraining my brain be the answer?
www.theguardian.com
February 27, 2026 at 9:01 AM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
julialmv.bsky.social
As a bonus - we included an optional survey that grew out of my attempt to visualize how people with ME (which about half of people with Long COVID have) spend their time, and how that varies with illness severity.

Soon, instead of a cartoon, we'll be able to use real data!

2/2
A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.
June 23, 2025 at 4:05 PM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
julialmv.bsky.social
Please consider joining the @patientled.bsky.social registry whether you have Long COVID or not.

We are excited to begin longitudinal data collection (which has been lacking) &
let interested folks know about additional research & clinical trial opportunities:
mydatahelps.org/e/PLRCRG/Wel...

1/2
Survey - MyDataHelps
mydatahelps.org
June 23, 2025 at 4:05 PM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
elhopkins.bsky.social
Did we hear the story of what happened when they didn’t lockdown? No!
www.latimes.com/business/sto...
Column: Did Sweden beat the pandemic by refusing to lock down? No, its record is disastrous
A new study shows just how badly Sweden fared in the pandemic.
www.latimes.com
February 7, 2026 at 1:13 AM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
christineloriol.bsky.social
#Covid hat den Kindern doch etwas gemacht. Wir hätten es nicht zulassen dürfen. Alles Verharmlosen ging nur, wenn man #LongCovid ignorierte, auf akute Infektionen oder nur auf Intensivstationen schaute. „Wir müssen auf der Seite der Vorsicht irren“ (Lothar Wieler, Präsident RKI). Hätten wir müssen.
January 31, 2026 at 4:04 AM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
buechnerronja.bsky.social
Danke @frauxausnrw.bsky.social
& Community.

Natürlich auch 2026 weiter für die Unsichtbaren 🫶 Es ist noch ein weiter Weg zu einer normalen Versorgung und gegen die Stigmatisierung und Psychologisierung - aber es geht definitiv endlich in die richtige Richtung 💚
Ein brennendes Teelicht in einem Kerzenhalter mit der Aufschrift „Weiter für die Unsichtbaren“ steht vor einem Fenster, die Wolken draußen sind rosa-grau (Sonnenaufgang). Um das Teelicht herum steht ein kleiner grüner Tannenbaum aus Krepppapier, ein kleiner weißer Herrnhuter Stern und von oben hängt eine glitzernde Weihnachtskugel ins Bild
December 19, 2025 at 7:10 AM
restthingever.bsky.social
So stelle ich mir zum Beispiel eine Präventionskampagne des Schweizer BAG vor.

Aber nein, in der Schweiz beobachtet man die Lage (im Besten Fall) und setzt auf sog. “Eigenverantwortung”, die der Grossteil der Bevölkerung nicht wahrnehmen kann, weil nicht informiert werden.

#swisscovidfail
thecovidinfoguy.bsky.social Denis - The COVID Info Guy @thecovidinfoguy.bsky.social · Oct 5
By nychealthy @nychealthy.bsky.social

The best way to prevent Long COVID is to prevent getting COVID-19 or getting it multiple times. That means staying up to date with COVID-19 vaccines and wearing a well-fitting mask, especially when indoors among crowds.

Learn more: www.nyc.gov/site/doh/cov...
The image is a public health poster from NYC Health titled “Prevent Long COVID.” It explains that the only way to prevent Long COVID is to avoid getting COVID-19, as each infection carries a risk. It lists prevention tips: Wear a well-fitting mask (N95, KN95, KF94) in crowded or poorly ventilated indoor spaces. Stay up to date with COVID-19 vaccinations. Stay home if sick, or wear a mask if you must go out. Avoid close contact with sick people. Wash hands often or use hand sanitizer.
October 5, 2025 at 6:55 AM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
thecovidinfoguy.bsky.social
By nychealthy @nychealthy.bsky.social

The best way to prevent Long COVID is to prevent getting COVID-19 or getting it multiple times. That means staying up to date with COVID-19 vaccines and wearing a well-fitting mask, especially when indoors among crowds.

Learn more: www.nyc.gov/site/doh/cov...
The image is a public health poster from NYC Health titled “Prevent Long COVID.” It explains that the only way to prevent Long COVID is to avoid getting COVID-19, as each infection carries a risk. It lists prevention tips: Wear a well-fitting mask (N95, KN95, KF94) in crowded or poorly ventilated indoor spaces. Stay up to date with COVID-19 vaccinations. Stay home if sick, or wear a mask if you must go out. Avoid close contact with sick people. Wash hands often or use hand sanitizer.
October 5, 2025 at 1:29 AM
restthingever.bsky.social
🎯
Sehr gut analysiert
karin-kelle-herfurth.de Dr. Karin Kelle-Herfurth @karin-kelle-herfurth.de · Oct 3
„Fixierung auf Psyche vs. Soma ist problematisch!“
Okay. Aber wer tut das denn?
Ist die Forderung, diesen Dualismus zu überwinden, nicht eine Scheindebatte, die von Formen der epistemischen Gewalt ablenkt?
Oft wird nicht erkannt, dass sie aus einer selbstbestätigenden Deutung heraus formuliert wird.
October 5, 2025 at 6:48 AM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
dschilb-hffhhfhf74.bsky.social
bei uns 🇨🇭grad das in der zeitung 📰 www.tagesanzeiger.ch/long-covid-b...

nur reflektiert das gefühlt kaum noch jemand 🫤… die armen kids & umsorgten… nur weil masken *bäh* & uncool sind und man sich heute wieder feiert, wenn man trotz erkrankung ins büro & events geht, bezahlen diese den preis mit
Kinder erkranken nach zweiter Corona-Infektion doppelt so häufig an Long-Covid
Forscher haben Daten von jungen Covid-Patienten ausgewertet. Das Ergebnis: Eine neuerliche Corona-Infektion verläuft nicht milder, sondern erhöht das Risiko für langfristige Folgen.
www.tagesanzeiger.ch
October 1, 2025 at 3:42 PM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
mecfsresearch.bsky.social
🚨 Über 60 renommierte, internationale Forschende erheben ihre Stimme!
#MECFS & #LongCOVID betreffen Millionen – doch es gibt zu wenig Forschung & keine ursächlichen Therapien.
👉 Finde heraus, welche Forschende beteiligt sind und was genau sie fordern 🔗 declaration.mecfs-research.org
ME/CFS Research Foundation
ME/CFS Research Foundation is a non-profit organization dedicated to advancing research and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
declaration.mecfs-research.org
September 1, 2025 at 9:50 AM
Reposted by ̷L̷o̷r̷e̷n̷z̷ ̷
cabruce.bsky.social
We are not liars.
We are not depressed.
We are not anxious.
We are not thinking the wrong thoughts
We are not work shy
We are not benefit frauds.
We have #ME
We spat into test tubes and filled a detailed questionnaire to prove we were seriously ill.

The results 👇
www.decodeme.org.uk
Home - DecodeME
The world's biggest study into the causes of ME/CFS.
www.decodeme.org.uk
August 7, 2025 at 6:52 AM