Cross posted from https://swg-empire.de/post/21844

I mean, I didn’t load the chronic illness in there, that would be awesome! But I loaded dishes into the washer despite having said illness.

I have chronic fatigue syndrome, which basically means that I’m exhausted all the time. Or if I am not yet exhausted, even light work (like loading the dishwasher) can knock me down pretty hard. If I overdo it I experience flu-like symptoms the next day (for a few days).

So, doing some household chores is actually a pretty big deal for me.

Also, pro tip: Wash your water bottles before discovering mold in the cap.

I set up my own instance and I could subscribe to a bunch of communities and get posts from them. But beyond that I'm not seeing any updates. My logs are spammed full with messages like this.

Do they think I'm on http instead of https? I'm behind Apache as a reverse Proxy. Do I have to tell them or lemmy that I'm on https?

I'm really confused because the logs indicate that the messages are at least reaching the app.

proxy_1 | 172.19.0.1 - - [08/Jul/2023:13:49:57 +0000] "POST /inbox HTTP/1.1" 400 39 "-" "Lemmy/0.18.1; +https://lemmy.ml" lemmy_1 | 0: lemmy_server::root_span_builder::HTTP request lemmy_1 | with http.method=POST http.scheme="http" http.host=swg-empire.de http.target=/inbox otel.kind="server" request_id=2bb60404-bd87-4a79-95b8-2a25549b5bb0 lemmy_1 | at src/root_span_builder.rs:16 lemmy_1 | LemmyError { message: None, inner: Incoming activity has invalid signature, context: SpanTrace [{ target: "lemmy_server::root_span_builder", name: "HTTP request", fields: "http.method=POST http.scheme=\"http\" http.host=swg-empire.de http.target=/inbox otel.kind=\"server\" request_id=2bb60404-bd87-4a79-95b8-2a25549b5bb0", file: "src/root_span_builder.rs", line: 16 }] }

Kreuzpfostiert von Lases.

To get notified of posts from Reddit and so that I don't have to check back there I requested for !cfs@lemmit.online and !covidlonghaulers@lemmit.online to be created.

Comments aren't copied over, but it's better than nothing.

She thinks I should rather go outside, like the civilised person she is.

We don't have to wake up at 3 am though.

Ich habe gestern versucht https://ttrpg.network/c/rpgmemes zu abonnieren, das ging aber nicht. Habe auf verschiedene Art danach gesucht, mit voller URL, !rpgmemes@ttrpg.network mit und ohne Ausrufezeichen. Auch heute kann ich die Community nicht erreichen.

Und eben auch https://lemmy.world/c/animalsbeingawesome, das auch nicht geht. Dachte, dass vielleicht einfach nur ttrpg.network aus was für einem Grund auch immer nicht geht. Aber lemmy.world funktioniert ja grundsätzlich mit feddit.de.

Sonst dauerte es bei mir immer nur ein paar Sekunden, bis eine Community erreichbar war. Ich vermute mal, dass ich nichts weiter tun als warten kann, oder?

I've found other CFS groups on kbin.social and on a.gup.pe. Maybe they are a little bit more active.

• https://kbin.social/m/mecfs
• https://a.gup.pe/u/mecfs
• https://a.gup.pe/u/cfs
• https://a.gup.pe/u/mecfs_de (German and doesn't seem to have any activity)

Kbin.social seems to work well, but I don't see any content from a.gup.pe. I think it works differently from the Lemmy instances.

A great new interview series with Prof. Scheibenbogen from Charité in Berlin

Part 1:

https://youtu.be/q1D1_5-pXRA

In this film we talk about the two types of Long Covid that were recognised in her paper that was published in Nature Communications, and just how big a role auto-immunity might play in driving the condition.

The paper discussed in the video: https://www.nature.com/articles/s41467-022-32507-6

Prof Scheibenbogen’s most recent scientific paper: https://www.frontiersin.org/articles/10.3389/fmicb.2023.1196721/full

Part 2:

https://youtu.be/oEbMS5gWJJk

In this film we ask Professor Scheibenbogen about her thoughts on viral persistence, and how you’d go about treating auto-immunity in the context of ME/CFS and Long Covid.

Linked papers therefore:

Long COVID: Association of Functional Autoantibodies against G-Protein-Coupled Receptors with an Impaired Retinal Microcirculation: https://www.mdpi.com/1422-0067/23/13/7209

Case Report: Neutralization of Autoantibodies Targeting G-Protein-Coupled Receptors Improves Capillary Impairment and Fatigue Symptoms After COVID-19 Infection: https://www.frontiersin.org/articles/10.3389/fmed.2021.754667/full

Immunoadsorption to remove ß2 adrenergic receptor antibodies in Chronic Fatigue Syndrome CFS/ME: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5854315/

Immunoadsorption to treat patients with severe post-COVID syndrome: https://pubmed.ncbi.nlm.nih.gov/36719401/

Part 3:

https://youtu.be/XNOB4YkkWDA

In this film we talk about how long it might be before we can expect to see effective treatments getting through phase 2 and phase 3 trials, and why it is that getting this research done takes so long.

Linked paper:

Fighting Post-COVID and ME/CFS – development of curative therapies: https://www.frontiersin.org/articles/10.3389/fmed.2023.1194754/full

I created a community for cfs, mirroring r/cfs.

!cfs@feddit.de

/c/cfs@feddit.de

(Don't know if any of these links will work, we'll see.)

It's pretty new, but I hope many others suffering from this stupid sickness or those interested in learning about it will join.

Yesterday I thought I was feeling slightly better and could finally finish my rehab application today. My father also wanted to help me. But now I just feel miserable again. I hate this.

#rant #vent