• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Immunoadsorption not effective (study)

JollyRoger

Senior Member
Messages
138
Hi,

I found a new study about immunoadsorption for Long COVID sufferers.

Unfortunately, its in German.
The English article will be available in two weeks according to the website.

https://www.aerzteblatt.de/archiv/2...s-Fatigue-dominanten-Long-Post-COVID-Syndroms

The article basically says that the treatment removed all the relevant autoantibodies in ten patients (GPCR-AAK like beta1 and beta2).
They suffered from Long covid for about 24,5 months.
There was a very slight and irrelevant improvement.

Overall, it seems unlikely that these autoantibodies are the cause of the problem.
It rather seems to be an epiphenomenon.


There could be autoantibodies which are still attached to the Membran of the receptors, though.

The results are disappointing but its important to know because some people spend a lot of money for this treatment (at least in Germany).
 

Attachments

  • Screenshot_20230329-113310.png
    Screenshot_20230329-113310.png
    394.5 KB · Views: 11
Last edited:

Wishful

Senior Member
Messages
5,751
Location
Alberta
There are, and have been, plenty of "scientific sounding" theories about the cause of ME. Some people will be desperate enough to fall for the unproven claims. I'll wait for statistical evidence that the treatment actually works for people. If I did believe in a theory, I'd be willing to volunteer to try it, but I wouldn't pay to be someone's guinea pig.
 

BrightCandle

Senior Member
Messages
1,155
GIven the prior failures of removal of antibodies in ME/CFS I am not surprised. It is one of the big issues I have with a lot of the Long Covid research, by calling it a different disease they have spent billions replicating findings from ME/CFS and retesting drugs that failed before. So many dropped ME/CFS research to pursue the new hotness with Long Covid and made no actual progress in the state of the art at all. For all the activity I see a wasteland of new research far worse than was there before Long Covid. Once you cut through all the replication not a lot is happening.
 

JollyRoger

Senior Member
Messages
138
GIven the prior failures of removal of antibodies in ME/CFS I am not surprised. It is one of the big issues I have with a lot of the Long Covid research, by calling it a different disease they have spent billions replicating findings from ME/CFS and retesting drugs that failed before. So many dropped ME/CFS research to pursue the new hotness with Long Covid and made no actual progress in the state of the art at all. For all the activity I see a wasteland of new research far worse than was there before Long Covid. Once you cut through all the replication not a lot is happening.


People hope that therapies like BC007 or immunoadsorption will be the salvation. But they are going to be disappointed soon.

Autoimmunity seems to be a red Hering.
The same thing happened with Rituximab.
And they repeat this observation again and again.
 

Murph

:)
Messages
1,799
Scheinbenbogen has published a couple of previous pilot studies finding immunoadsorption worked for small groups.

https://pubmed.ncbi.nlm.nih.gov/29543914/

The study to which this thread refers is also small: 10 patients. It's not a great sign that it has come back negative, but it's not definitive either.

Scheinbenbogen also has another trial in the works, happening in August this year:
https://clinicaltrials.gov/ct2/show/NCT05629988
That, if successful, will feed into a proper randomised clinical trial of immunoadsorption and B-cell depletion therapy.
 

JollyRoger

Senior Member
Messages
138
For me this study is not convincing.
It's not a randomised double blind study.
So the effect could be placebo.
And, if you look at the graphs the change is not really spectacular:
Some were even worse afterwards.
I think the results will be the same like the study with Rituximab.

Don't get me wrong:
If I could try the therapy for free I would give it a shot.
But I would not spend 20.000€ for this treatment.

And a lot of people in Germany are desperate and spend this money.

And you are right: We need more studies.



[/QUOTE]
 

Attachments

  • Screenshot_20230331-122106.png
    Screenshot_20230331-122106.png
    555.2 KB · Views: 5
Last edited: