Plasmapheresis study at Berlin (Charite Prof Scheibenbogen)

[Jonathan Edwards]

My be the confusion comes from my being a layman...
The correct expression should be Immunoadsorption. It was a filter process and I got my own plasma reinfused. According to the information sheet I got from Fresenius its a "broad band" adsorber with the trade name "GLOBAFFIN" using a substance with the trade name "Peptid-GAM" which binds IgG (best affinity to subclass 1,2 and 4).
A reference for its application: http://www.karger.com/article/Abstract/90659

I wonder if I should change the title of this thread...

Yes this is immunoabsorption, not plasmapheresis. Clinicians are often sloppy with use of terms so it may well have been described as plasmapheresis. You could call it immunoglobulin-pheresis maybe but immunoabsorption is the term that has been around for a couple of decades.

 

[Gingergrrl]

Yes this is immunoabsorption, not plasmapheresis. Clinicians are often sloppy with use of terms so it may well have been described as plasmapheresis. You could call it immunoglobulin-pheresis maybe but immunoabsorption is the term that has been around for a couple of decades.

@Jonathan Edwards The terms seem to be different in the US, but I understand what you are saying. To use these terms, in your opinion, to reduce or eliminate auto-antibodies which would be more effective: immunoadsorption or plasmapherisis/plasma exchange? Or would they be equal in your opinion? Thanks!

 

[Jonathan Edwards]

@Jonathan Edwards The terms seem to be different in the US, but I understand what you are saying. To use these terms, in your opinion, to reduce or eliminate auto-antibodies which would be more effective: immunoadsorption or plasmapherisis/plasma exchange? Or would they be equal in your opinion? Thanks!

I don't think the terms are different. It is just that clinicians are often sloppy about using them. Plasmapheresis is a well tried and well refined technique. Immunoadsorption has had a lot of problems and has largely been pushed by commercial companies selling the adsorber. (Apologies I think I put absorption with a b before.) Adsorbers can activate complement and lead to red cell problems. These may have been overcome. I think plasmapheresis is always going to be more efficient per cycle since it takes all the plasma proteins out. The adsorber is not going to be 100% efficient. But it may have advantages with smaller fluid shifts. With anything like this the main thing is to have it done by someone with years of experience of the method and no commercial interest in selling something specific.

 

[Gingergrrl]

Thank you @Jonathan Edwards and that information is very helpful. If I pursue this route, it will definitely not be anyone trying to sell me anything and would be actual plasmapheresis although at present, I don't think this is what I will be doing anyway.

 

[Gingergrrl]

@Freddy, I was very curious how you are doing now (without jeopardizing the study in any way of course)! I am trying to get the autoantibody tests done that you had for the study via the same lab but it has been difficult to get the information to proceed (but I am still trying)! Hoping you are feeling better now and that the PP and IVIG led to remission of your symptoms.

 

[Lolinda]

Hi @Freddy I am worried but also hopeful, seeing that you were not on PR for a full month. Did you get healthy? Or are you in trouble? Drop us a line, I guess many people would be interested to hear from you...!


Btw, I have meanwhile researched quite a bit and put online all the available information, so others can get tested, too:

thread: testing for autoimmune CFS, POTS and OH

thread: research on how the antibodies bring about the different diseases

thread: doctors and potential treatments

I am determined to get treatment, but doctors are progressing so slowly, that I have plentiful time to search and try simple cheap and harmless natural self-treatments that helped somebody somewhere against autoimmune issues.

 

[Justin30]

It was exactly as you suspected: they were filtering my own plasma and returning it to my body, finally IVIG.
No plasma exchange!

Hi Freddy,

Did you get IVIG and at what dose per kg?

 

[Freddy]

Hi @Gingergrrl , @Lolinda , @Justin30 ,
I only sporadically visited PR over summer, hence the delay in answer.
I ve been in Berlin in September, they have now treated 10 persons and collecting blood samples all 3 months. The information I got is, that most persons (I think it was 8 out of 10) experienced similar transient improvement, like me.
Now they make up their mind, how to continue, in discussion is mainly a repetition of the procedure .
I guess it will take 1 or 2 more months for the decision... I will write in due course...

I forgot the IVIG dose, sorry.. I cant even blame brain fog for this.

I'm looking forward in the future of this promising research, they are continuously in contact with the Bergen team.
Interesting times for us, first time in my 16 years with CFS I feel sth. like hope - but hope management remains very important

 

[Lolinda]

Hi Freddy, thanks for your post, I am so so so interested in this topic!

transient improvement

• Nice! But were there also side effects? In you or in other people?
• And how would you describe that transient improvement: from where did you go to where for how long?
• When did improvement & relapse come, related to the times of ivig infusions?
• And how would you describe your current levels of complaints?

Your information would help to understand the curve of change. I try to search for natural, less risky and more permanent treatments, because IVIG one can't do forever. I will try them out one-by-one and retest if antibodies start to go down. I resolved ME, knee pain, lumbago pain, etc, but this will be the hardest battle. Without your informations it will be difficult to estimate even roughest magnitudes on how fast or slow changes are to be expected. Even if sthg works, all depends on how fast AB are produced.

I am reading research on RS, butyrate, Treg cells, ALA, improving low cortisol production, strenghtening the parasympathicus, avoiding nutraceuticals that increase AB production, transdermal borage, gut epithelium-derived cytokines, etc etc. Will post them on the adrenergic & muscarinic antibody treatment thread. We need permanent solutions, wether one tested positive for autoimmune POTS like me or for autoimmune CFS like you.

 

[DanME]

Hi @Freddy, I don't want to be downer, but have you explicitly asked the Berlin team, if you could share any detailed information about the ongoing study publicly, before they publish anything themselves? Maybe we should discuss this a little low-key. We don't want to jeopardize the study.

 

[Lolinda]

@DanME, I like your respect towards research! Did you work in research? If not, being a researcher myself, I add some comments on the issue you mention:

• "jeopardise the study" in the sense that the participants are influenced: This is apparently an open-label and not placebo controlled study. ( @Freddy, correct me if I am wrong!) As all participants are endowed with a brain they will inevitably think about whats going on and this will inevitably influence something to some extent, whether they share online or with a spouse at home or just think themselves. This is simply calculated already into the study design.
• "before they publish": when the general public hears about science publication issues, thats usually rare and extreme cases, further exaggerated by sensation-seeking journalism. These exist, yes, where researchers lose years of work because someone leaked something. But in the reality of science this risk applies only to a minority of situations , when we are typically talking about: patents, high profile publications for example in Science or Nature, or major inventions. The typical researcher experiences need for being secretive only in one situation: project proposals for funding. Now, what Freddy is talking about is none of these, really not.
• Scheibenbogen & co are able to judge, much better than we are. She is not a junior researcher. If some greenhorn comes from research on lab mice to humans, it could happen that they are surprised that "oh jesus ... these humans can talk!". How many dozens of studies with adult participants did Scheibenbogen already do? If they want things to be not communicated, they will be aware of the issue and will have taken measures.
• In this field, there is only a small handful of researchers. I made a list here, scroll down a bit for the researchers. Scheibenbogen will know all them personally and will be utmost able to judge what is ok and what not. Even if an information cannot be witheld, there are so many ways to confuse things, so noone can leak anything useful.
• Most importantly, the way Freddy communicates is the typical way how spreading information actually helps research! I experienced this myself several times: some study participant or student or someone in my team told somebody something... some month later, I get a surprising email from a researcher who wants to cooperate with me. Or it helped me to get funding from an enterprise. Most of science profits from openness and informal spreading of information.

Nevertheless, if anyone objects, we can move to a not so public place in PR. In any case, the big invention of Scheibenbogen isnt that plasmapheresis / ivig helps temporarily against antibodies - everyone knows that. The big find was that these antibodies are involved and that is already published. And using their antibody tests we can build treatment. I made the experience repeatedly that diseases that are believed to be unresolvable can be resolved by us, the patients, with a responsible "try & retest" approach of harmless stuff. I have seen so many times how slow science is (bureaucracy, funding and so on...) and we, the patients, do have actually the better chances to find good, lasting and low-risk treatments. Real and permanent solutions and not plasmapheresis. And from our findings the researchers will profit as "anecdotal" treatments to inspire their future studies. We help them and they help us. I plan to open a discussion group for people who did the Scheibenbogen tests for adrenergic and muscarinic antibodies. If you are tested positive and have CFS or POTS, I kindly invite you to be part of this, if you want. @DanME we will need such science-liking people as your comment shows you to be.

 

[Freddy]

Hi @DanME , you are not a downer, this is an important point!
Before I even started this thread, I talked to them in the first place and they gave me an OK. This is an open label trail with explorative character. I myself have a PhD and am well aware of the publication issues.

Have not the energy today, to answer all questions, but tomorrow it might be better...

 

[BurnA]

I ve been in Berlin in September, they have now treated 10 persons and collecting blood samples all 3 months. The information I got is, that most persons (I think it was 8 out of 10) experienced similar transient improvement, like me.
Now they make up their mind, how to continue, in discussion is mainly a repetition of the procedure .

Thanks for the updates - it's always nice to get some inside information.

When you say transient improvements - could you elaborate - how significant and for how long ? Just to get an idea of what transient means.

Looking forward to more updates.

 

[alex3619]

The idea of using plasmapheresis to test whether the symptoms of ME/CFS are caused by autoantibodies is a brilliant one. I'd never come across this technique before.

This possibility has been raised before, but by patients not researchers.

 

[Lolinda]

This possibility has been raised before, but by patients not researchers

Thousands of patients have more ideas than a handful of researchers. And we can beat this illness faster and better than they do, building on their resesarch.

 

[Gingergrrl]

I ve been in Berlin in September, they have now treated 10 persons and collecting blood samples all 3 months. The information I got is, that most persons (I think it was 8 out of 10) experienced similar transient improvement, like me.

@Freddy, It is good to hear from you and was curious when you say "transient" how long the improvements lasted, if you know the information.

I forgot the IVIG dose, sorry.. I cant even blame brain fog for this.

If you ever think of the IVIG dose, I would be very interested although it is dependent on body weight so would vary greatly.

I'm looking forward in the future of this promising research, they are continuously in contact with the Bergen team. Interesting times for us, first time in my 16 years with CFS I feel sth. like hope - but hope management remains very important

Agree that hope management is very important and I like how you worded that.

I try to search for natural, less risky and more permanent treatments, because IVIG one can't do forever.

I agree that you cannot do IVIG forever but in some autoimmune diagnoses, if you can get the approval through, you can have it ongoing for several years. (This has not been approved in my case and I am just beginning my advocacy quest to get it approved at all at the higher dose... but I know it can be done).

I plan to open a discussion group for people who did the Scheibenbogen tests for adrenergic and muscarinic antibodies.

@Lolinda I absolutely 100% want to be a part of this group. I am so very sorry that I have not been able to read or reply to your PM's yet.

Thousands of patients have more ideas than a handful of researchers.

I absolutely agree and find that very sad but true.

 

[perovyscus]

Like all beneficial treatments I've had, I lied through the teeth to donate plasma.

The benefits are trivalent: it will reduce the circulating amount of plasma bound drugs or exogenous toxins if I am having intense side effects, it reduces antibodies indiscriminately (although I believe in healthy patients non-significantly except for IgA, which isn't really helpful, but CFS patients would have a higher load) and in a select subset of patients improve symptoms of coagulation since sodium citrate is administered.

I venture this is not feasible for most patients: the exchange process itself is fine (unless you have difficulty with blood or headaches from the citrate), but pretending to be healthy for an hour prior for screening is a fatiguing task.

 

[redo]

I was told that they found so far a response in 3 out of 4 persons, mostly a rather transient one, which fits to the fact that antibodies will be replaced.

Intriguing.

Has something happened since you first wrote?

My doctor hypothesized that my illness might be caused by autoantibodies, much like in autoimmune encephalitis, but he was thinking more broadly, and checking for autoantibodies for such things as MG as well. I haven't got the results yet, but I think this field is promising.

I've had a transient improvement following IV steroids years back, IV steroids that I got for some other reason. I think of it mostly as a lead, that perhaps could say something about the root cause of my illness.

A common treatment for autoimmune encephalitis happens to be:
"IV solumedrol [steroids] (1 gram daily for 3-5 days then a taper over several weeks) and IVIg (0.4 g/kg/day for 5 days). Other groups have advocated plasmapheresis instead of IVIg, and so far there is not convincing evidence of superiority for either approach." https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4712273/

And I quote the Wikipedia article on autoimmune encephalitis "Treatment include first-line steroids, intravenous immunoglobulins (IVIG), and plasma exchange, and second-line Rituximab and Cyclophosphamide"

If it turns out that Rituximab is effective in some patients, plasma exchange as well, and some may benefit transiently from steroids, all of which are treatments against autoantibodies mediated disease, perhaps some autoantibody could turn out to be the root cause of ME/CFS.

 

[alex3619]

I've had a transient improvement following IV steroids years back, IV steroids that I got for some other reason.

I think that back in the 70s they were often using steroids on ME, in immunosuppressive doses. The problem was that sustained use at those doses resulted in all the usual steroid side effects. There are claims that the steroids did help. I do not recall if a formal trial was ever conducted.

 

[Jesse2233]

Any updates on this study?