this post was submitted on 17 Jun 2023
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Chronic Fatigue Syndrome / Myalgic Encephalomyelitis

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This 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.

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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

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