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...

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

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. 🧪🧵

“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

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

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.

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 🛟😷 🧪

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 😩

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.

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...

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/

Kostenübernahme inträvenöser Immunglobuline bei immunvermittelter Small-Fiber-Neuropathie: Nachdem die Krankenkasse ihren Antrag zuerst abgelehnt hat, kommt sie jetzt doch für einen befristeten Therapieversuch auf. #SFN #IVIG #LongCovid #MECFS #PostVac www.schwaebische.de/regional/sig...

Ein junger #MECFS -Patient hat um #Sterbehilfe gebeten. Die Eltern flehen mich an zu helfen - damit ihr Sohn überlebt. Der Sohn fleht mich an eine Stellungnahme zu schreiben und ihn in seinem Vorhaben sein unsägliches Leiden zu beenden zu unterstützen.

I have not heard of this for long covid but I could be mistaken. Long acting monoclonals are being trialed for LC But here is an example where repeated vaccination treated post infection illness from flu. It is a fascinating account if you have not heard of it. www.healthrising.org/blog/2015/11...

Moderatorin leidet unter #LongCovid: "Wenn ich fit genug bin, gehe ich zweimal im Monat spazieren" www.t-online.de/region/berli...

Categorization of #LongCovid into 4 subtypes based on symptoms, with further evidence of the increased risk from multiple infections and reduced risk by vaccination and boosters. www.thelancet.com/journals/ebi...

🍋 #LemonChallengeMECFS 🍋 Da ich den Beitrag noch nicht synchronisieren konnte, gibt es zumindest schonmal ein Outtake 😂 #MECFSResearchFoundation #MECFS

Huji Xu recognized by Nature as a top 10 who shaped science in 2024 Off-the-shelf CAR-T cells (CD-19 directed) for treating severe refractory autoimmune diseases. www.cell.com/cell/fulltex... www.nature.com/articles/d41...

#LemonChallengeMECFS der ME/CFS Research Foundation, inspiriert von der ALS 🧊 Bucket Challenge. Beiß in eine 🍋- als Zeichen für den Schock, den ME/CFS für Betroffene bedeutet. Awareness & Spenden für die biomedizinische Forschung! lemonchallengemecfs.org Ich nominiere @molbaas.bsky.social

(1/2) PolyBio’s research director Dr. Amy Proal talked about #viruses as drivers of aging processes on Dr. Mike Lustgarten’s “Conquer Aging” podcast: youtu.be/Y1nLjjMd7xQ?...

3 years ago, I was banging my head against the wall for months, trying to discover which type of immune cells were entering the brain after #COVID infection. Now we can all say together: neutrophils! And all starts in the nose and how mammalian airways evolved. Check out www.cell.com/trends/immun...

Changes in cerebral glucose metabolism among mild long COVID patients: an [18F]FDG PET/CT study www.scielo.br/j/bjmbr/a/QK... Screenshot from Science for ME update #LongCovid #PASC #PwLC #postcovid #postcovid19

Patient-Reported Treatment Outcomes in ME/CFS and Long COVID https://www.medrxiv.org/content/10.1101/2024.11.27.24317656v1

If you have #longcovid or #mecfs - How much steps can you do per day ?

#LongCovid www.medrxiv.org/content/10.1...

Im Bücherregal meiner Eltern stand ein Buch "Witze der Wende" Einer meiner Lieblingswitze daraus ist hoffentlich bald wieder brandaktuell: Treffen sich zwei Männer nach der Bundestagswahl. Fragt der eine: "Und, was haben Sie gewählt?" Sagt der andere: "FDP." Darauf der erste: "Ach, Sie waren das!"

Bad news incoming …

So, I never made an introduction post, but it's time for one! Hello there, friends👋! I am a Brazilian neuroscientist living in the U.S. My background is mixed, I am a clinical pharmacist who went on to do an MS in Biophysics and a PhD in Biochemistry. I came to the U.S in 2017, it started like this:

Hey there #pwme and #pwlc👋 #longcovid #mecfs

Another #longcovid fighter joined 🙏