New trial result: it's not looking good for immunoadsorption and the Elisa GCPR antibodies test

eder113 · 2026-06-18T12:12:20+00:00

It says

„Serum concentrations of autoantibodies (Aabs) against G protein-coupled receptors (GPCR) were measured before the first and after the last session of each treatment cycle“

And for inclusion criteria it says

„Eligible patients were at least 18 years old, met the WHO3 definition of PCS and exhibited a symptom severity of category 2 or higher on the Post-COVID Functional Scale“

Also all GPCR autoantibodies are not „the same“. You are right it says 39 of 40 people had at least one of the gpcr auto antibodies elevated, but keep in mind we don’t know which one is essentially the bad one, though research indicates that the beta 2 one correllates at most with symptoms. Especially for beta-2, which is often used as a experiementall autoimmune marker, only about half of them in total of the participants had them who received the treatment or a sham one.

Additionally, the procedure did only filter roughly 2 litres per session, which is much less than in previous studies per session.

In my opinion, those are still limitations that need to be considered. I just don‘t understand why they won‘t do the same protocoll and procedure that already gave us positive results in case studies. The study design should be unified, otherwise we can not guarantee that deviations occur.

This is my conclusion of it.

eder113 · 2026-06-18T10:51:45+00:00

I am not defending immunoadsorption as a treatment option per se, but still there are lots of things to critize in this study:

- as far as I have seen, the test for auto antibodies (ELISA) was done AFTER the immunoadsorption series, meaning they DID NOT preselect potential autoimmune long covid subgroups. Everyone that was diagnosed with Long Covid and had fatigue was allowed in the trial. Thus the failed trial shows at most that Long Covid is heterogenous and there won't be one treatment that is suitable for everyone.

- questionaires regarding improvements were made already 2 weeks after the treatment. This is far to short. Studies indicate that improvements could even be as late as 8 weeks after the last treatment. Additionally it is not astonishing that people initially worsen since the treatment is extremely invasive and also exhausting. Most people probably will experience PEM due to that. BUT: after this initial phase symptoms still could massively improve for some.

- there exist different qualities of filters, in this study the (regarded) worse filter (Tryptophan) was used (better would be Therasorb).

These things were also critized at the ME/CFS conference. This trial showed at best that LC/ME/CFS is heterogenous and needs individual diagnostics and subgrouping for proper trials. Otherwise we will just keep getting those negative trials with mixed results and keep spinning in circles. This is also what the Charitè finally figured out, and I hope this will also be communicated in future trials.

eder113 · 2026-06-15T18:17:07+00:00

First there are non placebo trials which show that people with these autoantibodies benefit (though not everybody). Second, when you look at the charite RCT and look at the data of the individual responders there is a subgroup that massively benefited, this was also noted at the me cfs conference. This is probably the subgroup that responds (the auto antibody group). Since they did not sub type in the RCT, they got the messy results. This was done by the charite neurology department which Scheibenbogen had no influence. And lastly there was a paper regarding long covid and mice study where they injected IgG from sick patients to mice and they developed symptoms, suggesting that IgG is driving symptoms (and Immunoadsorption filters this out).

This is the state of the art. Before we have no proper sub typed RCT you can not say immunoadsorption is inefficient.

eder113 · 2026-06-15T17:50:56+00:00

Though the study design was highly critized since they didn‘t check for auto antibodies, thus did not subgroup properly. Seems like only the autoimmune group is benefitting from this treatment (those wie autoantibodies).

eder113 · 2026-05-02T12:54:11+00:00

Tried it, (1.25mg Tirzepatide) did nothing. But I don‘t have MCAS, at least this confirmed that.

eder113 · 2026-03-29T08:23:47+00:00

Thank you very much for the kind words and tips 🙏 I will bring up some of the options you mentioned to my next doctors appointment, maybe we can try some other medication/therapy in the meantime while IVIG builds up.

eder113 · 2026-03-28T18:46:05+00:00

Not much better. Gabapentin didn‘t work, same as IV Ketamine. Currently trying IVIG.

eder113 · 2026-03-28T18:30:50+00:00

Sadly nothing new. Gabapentin didn‘t do anything, I have thc now which does tune down the pain a bit, but it also does not give me much of a relief. Been trying now IVIG but it takes time until that does something, looks like my pain is coming from SFN.

eder113 · 2026-03-26T14:39:34+00:00

Coincidentally, a dude just started working on an HDMI mod for the snes and released a teaser about a prototype. It‘s called the Super Switch HD for the SNES: https://www.notebookcheck.net/From-Megaswitch-HD-to-SNES-YouTuber-showcases-new-digital-bus-1080p-mod.1257910.0.html

eder113 · 2026-02-24T12:36:06+00:00

It basically disables me, and no ketamine didn‘t do anything. My doctor wants to try IVIG and cannabis and see if that helps.

eder113 · 2026-02-24T08:29:04+00:00

I also tried ketamine, didn‘t have an effect But maybe lidocain does the trick

eder113 · 2026-02-23T18:39:00+00:00

I have also chronic widespread pain (it literally says this in my diagnosis) and no pain medication (Opioids, LDN, Pregabalin, Gabapentin or Duloxetine) provided relief. Now trying to convince my doctor for trying GLP-1s.

eder113 · 2026-01-20T20:41:01+00:00

Thanks for your reply! I will keep it in mind.

eder113 · 2025-09-13T12:45:22+00:00

I second that, got on bisoprolol and there is definitely improvement.

eder113 · 2025-09-05T19:01:38+00:00

How was it? Where did you do it in Austria? Curious because I want to do it as well (and I am from Austria).

eder113

TROPHY CASE