Is Apheresis an effective treatment for Long Covid and ME?

[Breagjam]

Yes, apart from possibly Russia, but I don't whether it is the European region or Asian.

I asked Marcus Klotz, the admin of the HELP Apheresis Facebook group. Machine locations are in Germany, Moscow, and at the beginning of December - Cyprus! He said there is a machine each in the UK and Turkey, but not open to Long Covid patients.
His last name is perfect - Klotz sounds like “clots”.

 

[perrier]

I asked Marcus Klotz, the admin of the HELP Apheresis Facebook group. Machine locations are in Germany, Moscow, and at the beginning of December - Cyprus! He said there is a machine each in the UK and Turkey, but not open to Long Covid patients.
His last name is perfect - Klotz sounds like “clots”.

Yes, it sounds like clots. But it actually translated from German to English to mean a block, as in block of wood. And the word has migrated on to mean an oaf, a boor. This German word has also migrated to Slavic languages, where folks tend to use the term Klotz to mean a clumsy oaf. From Middle High German, kloz. And in Yiddish it has become Klutz. But I agree, clots is appropriate in this context.

 

[Countrygirl]

Just seen this post elsewhere:

Hi, I emailed the clinic in Germany who have been having success with treating the blood of LC sufferers. They have sent this response:

Thank you for your email, we have added you to our waitlist for HELP Apheresis treatment.
Our waitlist is long, but we will get in touch with you as soon as we have space available.
In the meantime, we recommend you start anticoagulant therapy. You can show your doctor the following papers as evidence for this approach.

The Cross-Talk between Thrombosis and Inflammatory Storm in Acute and Long-COVID-19: Therapeutic Targets and Clinical Cases: https://www.mdpi.com/1999-4915/13/10/1904

SARS-CoV-2 spike protein S1 induces fibrin(ogen) resistant to fibrinolysis: Implications for microclot formation in COVID-19: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8380922/

SARS-CoV-2 spike protein induces abnormal inflammatory blood clots neutralized by fibrin immunotherapy: https://www.frontiersin.org/.../fimmu.2021.728896/full
It is clear that excessive clot formation is a key mechanism in Long COVID. This is why anticoagulation is beneficial.

As a guide, we suggest therapeutic dosages of Apixiban (5mg twice a day) plus Aspirin (75-100mg once a day, >90kg=200 mg). Most people have no problems with these drugs, but your doctor will discuss their suitability for you before prescribing.

If your doctor is unwilling to prescribe this, then you are welcome to come to our clinic in Mulheim and we can prescribe them in order to stop your illness from progressing. In this scenario, you would need to do the following:
Email this address with:
Your phone number,
Your medical problems
Your current medication with dosage
Your blood results for aPTT, Fibrinogen and Full Blood Count (FBC) taken within the last 2 weeks.
We will then arrange a time to call you to discuss contraindications to these medications. If anticoagulation therapy is suitable, then you can pick up your prescription in person from our clinic (address below) during working hours.

If you are unable to get the required blood tests locally, then we are able to do them at the clinic, you must arrange this with us. Results take 24 hours to process and we cannot prescribe medication until we have received these results.
Estimated costs:

One month of anticoagulation medication from our local Pharmacy (100m from the clinic) will be between €200 and €500.
Prescription admin fee is €5.
If required, the cost of the blood test is €30 (aPTT, Fibrinogen, FBC)
Best,
Dr Beate Jaeger.
Dr. med. Beate Roxane Jaeger
Lipidzentrum Nordrhein
Wertgasse 35
45468 Mülheim an der Ruhr
Tel: +49-208-941 32 403
Fax: +49-208-941 32 405
Mobil: +49-173-73 67 750

 

[GlassCannonLife]

I know the price of the treatments. I was wondering about the price of the actual machine

Having no experience in this specific area but having worked a fair bit with medical devices, I'd ballpark around 200-600k?

 

[tyson oberle]

Having no experience in this specific area but having worked a fair bit with medical devices, I'd ballpark around 200-600k?

SWAlexander already responded to this question with a very informative link about the possible price of this machine, basically anywhere from (USD)$20,000 - $157,000 with $50,000 being the typical price

 

[Consul]

How about extracting some blood volume every week and have the body replace it. That way you could reduce the number of clots in the blood over time. Is that a viable strategy?

 

[SNT Gatchaman]

How about extracting some blood volume every week and have the body replace it. That way you could reduce the number of clots in the blood over time. Is that a viable strategy?

Leeches!!

I suspect you need to remove a significant amount at once, rather than a little bit at a time. I say this as they are likely hanging out in the capillaries, so you might not get many from one small volume peripheral venipuncture. You'd probably get anaemic before you reached a useful reduction.

There's also the possibility that a critical mass of them promotes more, so that they might be replaced before you got the next volume out. I.e. you have to get below the critical mass. This might be why some patients seem to need more treatments.

All very early so little established knowledge. We still have to prove they're the cause.

If this pans out then the ban on ME patients giving blood will have been quite smart. A ban introduced despite the fact that it was "all in our heads"...

 

[Countrygirl]

Asad has just tweeted this:

From Dr Asad Khan @doctorasadkhan
"WE NEED HELP FOR OUR #LongCovid #ME STUDY
German friends, I need details of the following ideally not too far from Mulheim,
1. A nuclear medicine clinic/university department able to do 111-indium labelled platelet Oxinat nuclear scans (we will provide the activated platelets)
2. A magnetic resonance imaging (MRI/MRT) dept able to do MR spectroscopy to assess muscle lactate.
These tests will really help show the biomedical nature of these illnesses & also demonstrate response to anticoagulation and apheresis.
PLEASE MAKE ENQUIRIES!
DANKE"

 

[bensmith]

This scared me : (. Hope they get it.

 

[SNT Gatchaman]

@bensmith I think they're just being opportunistic. Syncing up studies in parallel for speed and efficiency that otherwise would run separately and delay things.

Exactly like the vaccine development in <1 year not 5 because the confidence was high enough to take the financial risk and do sections D and E at the same time as A, B and C. Faster than methodical A-B-C-D-E.

The Germany studies they're doing are all proof of concept. Larger, formal studies will follow if there is evidence from these.

 

[SWAlexander]

Asad has just tweeted this:

From Dr Asad Khan @doctorasadkhan
"WE NEED HELP FOR OUR #LongCovid #ME STUDY
German friends, I need details of the following ideally not too far from Mulheim,
1. A nuclear medicine clinic/university department able to do 111-indium labelled platelet Oxinat nuclear scans (we will provide the activated platelets)
2. A magnetic resonance imaging (MRI/MRT) dept able to do MR spectroscopy to assess muscle lactate.
These tests will really help show the biomedical nature of these illnesses & also demonstrate response to anticoagulation and apheresis.
PLEASE MAKE ENQUIRIES!
DANKE"

I have sent Dr. Khan this message:
amedes MVZ wagnerstibbe für Laboratoriumsmedizin, Hämostaseologie, Humangenetik und Mikrobiologie Hannover
amedes MVZ Trägergesellschaft Göttingen mbH
Georgstraße 50
30159 Hannover
www.amedes-genetics.de

 

[Judee]

I know the price of the treatments. I was wondering about the price of the actual machine

SWAlexander already responded to this question with a very informative link about the possible price of this machine, basically anywhere from (USD)$20,000 - $157,000 with $50,000 being the typical price

Perhaps a dumb question but I just wonder if places that are already doing Plasmapheresis couldn't also do this procedure with the equipment they have as this info page says Plasmapheresis is a subset up Apheresis.
https://litfl.com/apheresis-plasmapheresis-and-plasma-exchange/
???

 

[TripleSky]

And do we know how Dr Khan is doing now? Has he had the maximum number of treatments?

 

[SWAlexander]

Perhaps a dumb questions but I just wonder if places that are already doing Plasmapheresis couldn't also do this procedure with the equipment they have as this info page says Plasmapheresis is a subset up Apheresis.
https://litfl.com/apheresis-plasmapheresis-and-plasma-exchange/
???

Quite honestly, I don´t know. There is another aspect, trust. For right now I would only trust Dr. Jaeger, since she is doing the research and others need to learn the specifcs first. It is not a routine yet, like kidney dyalyse.

 

[Breagjam]

Perhaps a dumb questions but I just wonder if places that are already doing Plasmapheresis couldn't also do this procedure with the equipment they have as this info page says Plasmapheresis is a subset up Apheresis.
https://litfl.com/apheresis-plasmapheresis-and-plasma-exchange/
???

From what I’ve read HELP Apheresis is the specific type of apheresis that sh/b used for microclots and has its own machines and Plasmapheresis equipment wouldnt work for this purpose.

 

[Countrygirl]

And do we know how Dr Khan is doing now? Has he had the maximum number of treatments?

Dr Weir phoned last night and said he is planning to go to Germany next week to learn more about the process and he will be speaking directly with Asad. Also, I think Prof Pretorius will be there.

 

[junkcrap50]

While receiving HELP Apheresis, could a patient also receive Immunoabsorption at the same time to remove pathogenic autoantibodies associated with ME/CFS?

Does one procedure preclude the other? I believe both separate your plasma. Why couldn't replacement of all plasama (plasma exchange) with synthetic or donor plasma help treat microclots the same way? It is probably not used b/c risky using donor plasma, but would remove all autoantibodies & cytokines/inflammatory metabolites too, no?

EDIT: Answered my own questions:
Yes, likely can do HELP + immunoabsorption, as there is such as thing as "double filtration apheresis." And sometimes they use filters with different pore sizes. And the heperain used is filtered out using a seperate filter, and also use another alkaline filter to raise the pH of the blood back to normal.

In the case of semi-selective lipoprotein Apheresis (cascade or double filtration), the plasma proteins are filtered out in a second step without differentiation between pathogens or desirable plasma constituents.

Also, could discard all of the plasma, but has downsides:

. Plasma modulation is better than plasma adsorption and full-blood adsorption in terms of compatibility with a patient's prescribed medicines.

Source: https://www.bbraun.com/en/products-and-therapies/extracorporeal-blood-treatment/apheresis.html

 

[SWAlexander]

Apherese: effective treatment for Long-COVID?
A team of researchers from Stellenbosch University's (SU) Department of Physiological Sciences are on their way to Mülheim in Germany to collaborate with and receive training from Dr Beate Jaeger, a medical doctor pioneering the use of apheresis in the treatment of individuals with Long-COVID.
This is part of an international research and collaboration effort focused on the treatment of Long-COVID. In South Africa alone, the prevalence of persistent COVID symptoms lasting longer than 90 days is estimated to affect at least 45% of the 2.7 million South Africans who have survived the SARS-Cov-2 infection. This means that over 1.2 million South Africans may require further medical support for this very poorly understood condition.
Prof Pretorius, head of SU's Department of Physiological Sciences, says the social and economic burden of this condition will be staggering if effective treatments are not developed: “We will work with Dr Jaeger to assess the efficacy and feasibility of H.E.L.P. apheresis in treating individuals with Long-COVID, and elucidate further avenues of investigation in COVID coagulopathy."
Apheresis essentially means a separation of plasma from blood cells in order to remove pathogenic substances from the blood in the treatment of chronic metabolic diseases. H.E.L.P. apheresis, where H.E.L.P. stands for Heparin-induced Extracorporeal Lipoprotein/fibrinogen Precipitation, consists of four steps: plasma separation, precipitation with subsequent filtration, heparin adsorption and ultrafiltration.
Dr Jaeger has been working with H.E.L.P. apheresis since 1985, treating patients with metabolic disease, in collaboration with the inventor of the machine. She is currently using the B Braun H.E.L.P. apheresis machine in the treatment of individuals suffering from Long-COVID to filter out micro clots, clotting factors, cholesterol, fibrinogen, cytokines, the COVID spike protein and autoantibodies.
More at: http://www.sun.ac.za/english/Lists/news/DispForm.aspx?ID=8733

 

[MartinK]

Hi all, I want to check availability of apheresis treatment here, in Czech Republic, and sure, also prices...
I need advice because it seems to me that there are more types of apheresis and more types of devices. I want to know exactly what type of apheresis to look for.
From PR I know HELP APHERESIS...from Braun most often.

Here in Czech Republic I often find clinics with blood donation... Donor hemapheresis.
Also found Plasmapheresis, Therapeutic hemapheresis and many, many LDL Apheresis for selective removal of cholesterol from the patient's blood.

HELP APHERESIS is right / standard machine what wetalked about here, right, if I understand good?

 

[SWAlexander]

MartinK
I would not jump to the conclusion about "standard machine". H.E.L.P. stands for Heparin-induced Extracorporeal Lipoprotein/fibrinogen Precipitation, consists of four steps: plasma separation, precipitation with subsequent filtration, heparin adsorption and ultrafiltration. We all will know more after Dr. Jeager`s team published their findings.