Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
lemmy.world
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.
We don't have to wake up at 3 am though.
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
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
Chronic Fatigue Syndrome / Myalgic Encephalomyelitis
!cfs@feddit.deThis is a new place for people coming from r/cfs.
For research, treatments, and personal stories regarding Chronic Fatigue Syndrome (CFS)/Myalgic Encephalomyelitis (ME). ME/CFS is a multi-systemic neurological disease, distinct from chronic fatigue as a symptom.
Icon based on the Lemmy logo by Andy Cuccaro licensed under the Creative Commons Attribution-Share Alike 4.0 International license. Eyes taken from the r/cfs logo.
