Dr. Markus Fraczek Profile picture
Jul 10, 2022 14 tweets 6 min read Read on X
Very interesting podcast by @SessionsTlc with @Dr_B_Hohberger about her research on #LongCovid and #BC007.As someone who follows the research on GPCR autoantibodies in #MECFS/#LongCovid, this interview was very insightful and clarified some points for me.1 tlcsessions.net/episodes/episo…
Summary of the main points (I also added some notes):
Endothelial dysfunction was the starting point, well known in glaucoma (eye disease), in 2020 also after virus infection observed. Post-Covid patients had reduced blood flow to the eyes, therefore presumably to other parts
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of the body. Reduced blood flow causes problems in the long run, occlusion is not good for the surrounding tissue. At the same time it was found that patients had certain autoantibodies (AAB), it is known that in presence of these AAB the perfusion in the eyes is reduced, and
3
probably in the rest of the body. These GPCR-autoantibodies activate target receptors in cells in a harmful way, different from the normal activation by physiological agents: over stimulation, and receptor desensitization. This causes many problems in the body, but it is
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unknown what happens exactly in the cellular target after such activation. LC patients have 4-5 different AAB, e.g. beta2-adrenergic receptors antibody. AAB can be present in patients with no symptoms, only when there is a coexisting factor do symptoms occur.
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There must be a preexisting factor for developing LC, but it is unknown what it is. (note: in sciencedirect.com/science/articl… we can see that also many healthy people have these AAB). The idea was to use BC007 to remove AAB and therefore increase blood flow in the eyes
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(and body), and see which symptoms decrease or disappear. BC originally had the same idea for heart diseases with the same AAB. Healing attempts in Erlangen: 4 LC patients, only one 75-min infusion needed, no side effects, first brain fog improved, symptom-free in 3-4 weeks.
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BUT the outcome of the treatment depends on the severity of the symptoms, BC007 improves the blood flow, but irreversible damage to the cells may already be present.
(note: I assume that there have been unpublished healing attempts, I think the remark above is based on that).
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BC007 neutralizes the functional activity of AAB. Normally the body would produce new AAB after a short period of time, but new AAB no longer appear after treatment with BC007 (note: this is the crucial point, otherwise such treatment would be useless).
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AAB are produced by B-cells (note: In a talk Prof. Harrer said that BC007 actually acts on these B-cells and stops the production of AAB ).

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But there must be some kind of autoimmune predisposition in the patients with #LC/#MECFS, therefore even after successful treatment with BC007, other infections could trigger the production of these AAB again. #MECFS same as #LC, just a different name.
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Two projects in Erlangen:
1. Phase 2 clinical study with BC007 for LC with autoimmunity, 30 patients, start in autumn 2022 (waiting for BC007 from BC), currently developing protocols for study.

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2. Development of an algorithm for the diagnosis of LC; 300 patients, started in Dec 2021, pull patients for BC007 study, 3 LC subgroups: autoimmunity (BC007), viral persistence (further vaccination), organ dysfunction (e.g. fibrosis lungs) (rehabilitation).

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I will stop here, there is more info. It is an excellent podcast, I recommend listening to it.

Thank you both, @Dr_B_Hohberger and @SessionsTlc!

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More from @MarekSJF

Sep 28, 2023
Recently, the respected German magazines and newspapers Spiegel, Süddeutsche, and FAZ published hit pieces on #LongCovid: overestimated danger, scaremongering, underlying psychosomatic and hysteria as the primary cause, and sometimes even smearing patients. #FakeNews

1/
Very disappointing to see this. I am not a fan of conspiracy theories, but these articles were published in a relatively short period of time to change the public opinion on #LongCovid.

Here are some of those articles:

2/
"Study criticizes research: risk of Long Covid may be overestimated."

3/

spiegel.de/wissenschaft/m…
Read 7 tweets
Jul 26, 2023
Has anyone with non-post-COVID #MECFS tried #TheNicotineTest?

To my understanding, nicotine patches may only help those with #LongCovid (not #PostVac/#MECFS) as nicotine removes/prevents the binding of the SARScov2 spike protein to the nicotinic acetylcholine receptor. 🤔
Interesting. It seems some people with #MECFS are claiming to benefit from it. 👇

I wonder if this is due to a therapeutic effect, or just the fact that it is a stimulant (and reduces anxiety).

Read 15 tweets
Jul 13, 2023
Als 2021 ein "deutschlandweites Netzwerk von Kompetenzzentren und interdisziplinären Ambulanzen" für #MECFS/#LongCovid im Koalitionsvertrag festgeschrieben wurde, haben viele Hoffnung geschöpft, dass es nach so vielen Jahren endlich vorangeht.



1/cms.gruene.de/uploads/docume…
Leider hat sich diese Hoffnung als nicht berechtigt erwiesen.

Nach der gestrigen (12.7.23) Pressekonferenz des Gesundheitsministers, eineinhalb Jahre nach dem Beginn der Legislaturperiode, hat man den Eindruck, dass sich die Regierung von diesem Vorhaben distanzieren will.

2/
Hier der Link zur besagten Pressekonferenz:



3/youtube.com/live/DWaBW5v21…
Read 11 tweets
Dec 15, 2022
Es mag für Außenstehende unvorstellbar klingen: Es gibt eine schwere Krankheit #MECFS, die seit 1969 von der WHO als neuroimmunologische Erkrankung anerkannt ist, aber die Patienten in Deutschland und fast überall auf der Welt werden ohne jegliche Versorgung allein gelassen.

1/
In Deutschland gibt es im Grunde nur ein Zentrum für Erwachsene in Berlin, das aufgrund des Andrangs nur für Brandenburger und Berliner zugänglich ist.

Patienten mit #MECFS werden seit Jahrzehnten systematisch falsch behandelt, was sie nur noch kränker macht.

2/
Insbesondere ist die Aktivierungstherapie bei #MECFS kontraindiziert. Dieser werden jedoch Menschen mit #MECFS in der Rehabilitation in Deutschland systematisch ausgesetzt, mit verheerenden Folgen, bis hin zur vollständigen Bettlägerigkeit.

3/
Read 7 tweets
Oct 18, 2022
Lieber Herr Grill @m_grill

Dahinter verbirgt sich ein Wissenschaftsskandal enormen Ausmaßes: Zwischen 2005 und 2010 wurde in GB eine umfangreiche, £5 Millionen Studie zu #MECFS durchgeführt, der "PACE trial".

1/
Das Problem dabei: Die Bewertungskriterien für GET und CBT wurden im PACE trail so lange angepasst, bis das gewünschte Ergebnis herauskam: Dass beide Therapien bei #MECFS wirken.

GET: Graded exercise therapy (Aktivierungstherapie)
CBT: Cognitive behavioral therapy

2/
In den neuen (2021) NICE-Richtlinien aus GB werden GET und CBT nicht mehr zur Behandlung von #MECFS empfohlen.

Es stellte sich nämlich heraus, dass GET und CBT nicht nur wirkungslos(!) sind, sondern dem Patienten sogar schaden(!!).

3/
Read 7 tweets
Oct 17, 2022
Prof. Scheibenbogen: "Ich habe Sorge, dass der Film dazu führen wird, dass viele Patienten in ihrer Verzweiflung Geld in die Hand nehmen und sich eine HELP-Apherese machen lassen. Da hat sich ein Markt entwickelt."
tagesschau.de/wissen/gesundh…
Ich finde es wichtig, dass die fehlende Evidenz von Therapien thematisiert wird. Die Meisten, die ich kenne, sind erst durch eine falsche Behandlung bettlägrig geworden.
Übriges, auch bei mir hat eine falsche Behandlung zu einer Verschlechterung geführt.
Read 4 tweets

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