Marco (with Long Covid)

Mutter einer ME/CFS-Betroffenen: „Politik und Medizin müssen handeln“ Ein 21-Jähriger mit schwerster ME/CFS kündigt assistierten Suizid an. Eine betroffene Mutter fordert ein Ende der skandalösen Ignoranz.

Wie Samuel seine Realität als Schwerst-ME/CFS-Erkrankter schildert, mag für viele wie ein Bericht aus einer fremden Welt klingen – für mich ist sie nur allzu vertraut.

Denn seit fünf Jahren, seit sich die #MECFS-Erkrankung unserer Tochter Mila (23)
www.furche.at/gesellschaft...

„Jemand“ 😀 👀

I want to remind everyone that this summit is open to the public and free! You could even design an interprofessional event on #MECFS or #LongCOVID that gets funded.

REGISTRATION DEADLINE IS TOMORROW, early, so register today if you're interested!

Some have asked so..Here's a list of the meds/supplements/other treatments that have helped us go from severe #MECFS to moderate (housebound) as at 2024. Long list. No magic cure. ymwv.

We’ve kept everything that helps a bit. If we stop any, we get worse again. 5 yrs to get to this point.

1/6

Did you also have fatigue or cognitive issues ?

Gute Idee

Mist. Aber passt ja auch

Egggggert ! Die Russen kommen

Screenshot von Professor Diener mit Abbildung aus NEJM 31.07.2024, die die komplexen Mechanismen von Long Covid darstellt.

Screenshot von Professor Diener mit Abbildung einer schwedischen Studie, die zeigt, dass COVID-19-Impfung das Risiko von Long Covid deutlich reduziert.

Professor Dr. med. Hans-Christoph Diener, emeritierter Professor für Neurologie in Essen und einer der prominentesten Neurologen im deutschsprachigen Raum, hat eben im Streamed-up explizit betont, dass Long Covid NICHT psychosomatisch, sondern ORGANISCH ist. 🧠

Sometimes I'm not symptomatic at all...
And other times I'm awake.

On the #NIH advocacy call right now.
Koroshetz on, discussing the new Vernon et al. paper distinguishing between #pwME post-COVID versus those we cannot PROVE had COVID.
~ 0.9% in those we can't prove had COVID
vs
~4.5% in those who were in the post-COVID group
met dx criteria for #MECFS. 🧪🧵

Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards The chronic illnesses that make doctors doubt their patients often start after what “should” be a short-lived sickness—like COVID-19.

“Imagine you go to an emergency department, you wait 13 or 14 hours, your condition actually deteriorates, and then you’re told, ‘Hey, good news, everything is normal” ....

Excellent article about mistreatment of #Longcovid similar to what has happened to #MECFS patients for decades.

#medsky

Contacted you via LinkedIn

Thanks Jamie 🙏

Hi @exceedhergrasp1.bsky.social
How could we get in touch ?
I want to discuss some ME developments #MDC002 #MITODICURE

Strange

We finally managed to move all our Swiss long covid and myalgic encephalomyelitis advocacy accounts away from hell. You find patient organisation Long Covid Switzerland under @longcovidch.bsky.social and Long Covid Kids Switzerland and their families under @swisslc-kids.bsky.social.

a man with blue paint on his face is screaming and says loodaaa !!! ALT: a man with blue paint on his face is screaming and says loodaaa !!!

Our freedom !!!!!

What biometrics do they use to evaluate the recommendation ?

Light purple circle with Paxlovid in it that overlaps with a darker purple circle that says Pemgarda. Both circles have a black and white oval saying FDA Approved.

Long COVID Labs (@longcovidlabs.bsky.social) announced on X a case series study testing

⭐PAXLOVID + PEMGARDA⭐

to treat #LongCOVID!

Long COVID Labs is using DeSci trials.
Patients & researchers upvote possible treatments for trial.
I'm working with them.

x.com/longcovidlab...

#medsky #IDsky 🛟😷 🧪

Postviral Ethics - RCPS & PCNN | Radboud University Workshop for Post-COVID patients and organisations concerned with Post-COVID.

ANNOUNCEMENT: international (hybrid) workshop on POSTVIRAL ETHICS
Date: 3 February 2025
Place: Radboud University

Workshop details and the programme can be found here:
www.ru.nl/en/about-us/...

Registration here:
forms.office.com/pages/respon...

#LongCovid #AIDS #MECFS #Lyme #Qfever #HIV #Ethics

Oh no! I am lost 😩

Donate to Supporting Long COVID Research for a Healthier Future, organized by Marco Wetzel Dear friends, family, and compassionate supporters, I am reachi… Marco Wetzel needs your support for Supporting Long COVID Research for a Healthier Future

I have started a birthday fundraiser for long COVID biomedical research and clinical trials. All donations will go to organizations actively involved in research activities 🔬 👩‍⚕️

Please share it widely 🙏

Link: gofund.me/be1b090d

#Maraviroc after-effects just keep on giving. Last night, out of nowhere when I was walked inside my house I just suddenly collapsed on the floor. Crazy sh**. No idea what all of this is. #LongCovid

Been taking low dose rapamycine for 4 full weeks now. Haven't finished the experiment but 3 things so far stand out:
1/

Gentle reminder that the patients that are suffering the most are locked out of clinical trials. You need to be moderate to mild to be 'healthy' enough to enroll.

Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence Background Recent studies provide strong evidence for a key role of skeletal muscle pathophysiology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In a 2021 review article on the pa...

Published today!

Carmen Scheibenbogen, Klaus J. Wirth: Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence

doi.org/10.1002/jcsm...

Ich hoffe, dass es auf nicht öffentlichen Kanälen seitens der NATO da eine klare Ansage in Richtung der Russen gibt. Aber irgendwie hört man generell wenig ?! Sei es bezüglich der Nordkoreaner, der Seekabel oder des neuerlichen Beschuss der Zivilmaschine … wie kann das sein ?

I was asked this question on the other, less pleasant, platform. Basically: what drugs to I recommend for mitochondrial dysfunction. Here is my response (🧵): 1/

Thanks for sharing it on Bsky as well :)