Aphaeresis/ Apheresis (for removal of microclots)

sveinnb said:
This was covered on this thread: https://www.s4me.info/threads/reap-...-the-human-exoproteome-2021-wang-et-al.20747/
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It looks as if they found reactivities to cytokines, which are present at vanishing small concentrations in plasma so one would expect any complexes to be easily cleared long before getting large enough to form 'micro-clots'

sveinnb said:
But if the microclots are so large why do they not clot up in membranes like the kidney?
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Well exactly, the theory doesn't make a lot of sense, does it?
How did these clots get through the lung capillary bed if they really formed in vivo? If this was venous blood and the lots were there at that point the lung should have filtered them out completely.
If they do get through to the systemic circulation why aren't the patients having daily strokes, or at least TIAs?
 
I agree this is something that us elevated at the lab.

I'm going to refine my theory that the plasma in ME/CFS and LC patient is full of autorective antigens towards soluable exoproteome (not only cytokines but all possible kinds including GPCR antibodies as shown in the REAP study) and immune complexes in vivo become microclots in vitro due to lab process.

In vivo this immune complexes are more like nanoclots that become microclots once the fibrogen and other blood components attach in vitro. So here I'm coining a new term: nanoclots
 
If Pretorius and her team do careful lab work, and I have no reason to think that they don't, then it's possible that the differences in in vitro clots they are reporting are real. Surely they would have thought about whether variations in the process (e.g. time after blood collection) are creating the different results in acute covid and people with LC versus in healthy people.

So, assuming the in vitro 'microclots' are forming as a result of the blood processing, there's the issue of why they seem to form more in people with LC and ME/CFS and acute Covid-19 compared to healthy people who have not had Covid-19.

I don't think that Pretorius has yet reported whether they are finding the same microclots in healthy people who have recently had Covid-19? It would be really useful to know.

I wish that someone would try to replicate the finding of microclots. If they do, I wish they would take blood samples from a few hundred people prior to getting covid-19, then, when they get Covid-19, sample them again, and then every month or so thereafter, to see when the clotting starts and stops and if it has anything to do with Long Covid.
 
Dr Paterson discusses harm to his patient needing ICU care following HELP apheresis. He does not give the full context and probably unlikely as it would breach patient confidentiality. He also has many opinions on the latest “fads” for long covid.

And then of course, this A phoresis, where this someplace in Germany where they take your blood filter, and you know, have long COVID I mean, we had a guy, you had to go to a absolutely an ICU in Germany, after this procedure calling same begging us to put them back on the protocol, we have a man which got him back to 90%, of where he was, and then ended up in the, in the ICU. In Germany, it’s back to the States because back to our protocol, you just sent a picture of him in the gym lifting, you know, massive, free weights, you know, so, the bottom line is, you know, IncellDX developed, you know, precision diagnostics, precision medicine, therapies, directed exactly at the pathogenesis. And, you know, it’s working, you know, and that’s variable in different people, you know, we’re not the fountain of youth, so you’re not gonna feel like you went to a spa, you know, after suffering for 15 months with long COVID, but you know, what your functional and you can, you can step up your exercise, and you’re, you’re on the road to to, you know, back to normal life. So, you know, it’s It’s been a challenge. But like I said, this is the most complicated virus and disease I’ve ever seen.
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transcription available at 25.20.
https://letstalkwellnessnow.com/202...ulers-have-in-common-with-dr-bruce-patterson/
 
'Long Covid left me close to taking my own life': Dorset man forced to travel abroad for treatment

"A Dorset man says he had no option but to travel to Germany for specialist treatment for his Long Covid because there was no significant help available on the NHS.

Chris Witham, who runs a theatre school in Bournemouth, flew to Kempten near Munich to spend £6,000 on pioneering treatment."

....

"Chris received a treatment called HELP Apheresis, which involved blood filtering, to get rid of any small, micro clots. Chris had three sessions during a week-long stay at a clinic.

Although there are reports that this has been a successful treatment for some people with Long Covid, it did not work for Chris."

https://www.itv.com/news/meridian/2...-6000-and-left-me-close-to-taking-my-own-life
 
Andy said:
Chris Witham, who runs a theatre school in Bournemouth, flew to Kempten near Munich to spend £6,000 on pioneering treatment."
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Isn’t describing this as a ‘pioneering treatment’ rather than an ‘experimental intervention’ rather prejudging the issue?

Someone had what they thought was a good idea and then rather than evaluating it experimentally set out to make money from it.
 
Another twitter report of significant deterioration in ME following apheresis, unclear exact details but asking other pwME to contact over harm experiences. Contained in tweets (in German) is doctors there are not recommending ME/CFS to have apheresis treatment. Not sure why

 
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Just to note that the patient tweeting in German underwent inuspheresis, not HELP apheresis. Unclear what the indications are for this other form of apheresis.

As far as I can see HELP apheresis is only being offered if (in vitro) microclotting is shown, with the presumption by those using it as a clinical test that this is indicative of in vivo amyloid fibrin(-ogen) and fibrinolytic shutdown. From what I've seen reported, a "positive test" would be required for LC or ME patients requesting the technique.

Probably also worth noting at this point that things seem to have gone relatively quiet on the HELP apheresis front. It seems as if their waiting lists are still very long, but I haven't seen claims of long-term cure being loudly proclaimed from patients on Twitter etc. Suspect this implies that the technique might be useful for some, with (possibly even major) symptom recovery; but that an upstream process driving the condition is still in play and needs to be addressed in a different fashion.

We await reports from Prof Pretorius et al on their studies of ME patients to see if none/few/many/all show the in vitro microclotting finding. I think this is being written up at the moment but am unsure whether it's part of or separate to their evaluation of Omicron patients.

 
SNT Gatchaman said:
Just to note that the patient tweeting in German underwent inuspheresis, not HELP apheresis. Unclear what the indications are for this other form of apheresis. [/MEDIA]
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Thanks @SNT Gatchaman, where are we up to on Amy Proul’s study on pwME and if they have microclots? She was going to start in January 2022 if I recall.

Yes, good point, good to see they are now developing a proper protocol for LC, now they have hopefully come up with a clotting biomarker. What are the preliminary results looking like?

Unfortunately pwME are still investigating and using extracorporeal apheresis with the hope it will cure their ME, like Inuspheresis, we also don’t know if this person may have had covid and when couldn’t get into a HELP-apheresis clinic, they went to what they thought was the next best thing using literature like this exploring apheresis for Post Covid conditions and ME/CFS.
https://www.nature.com/articles/s41380-021-01148-4
https://www.nature.com/articles/s41380-021-01148-4
 
hibiscuswahine said:
where are we up to on Amy Proal’s study on pwME and if they have microclots?
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I can't recall Dr Proal doing a separate study, so I'd assume she's working with the Pretorius team? Prof Pretorius did say she was starting ME evaluation in January, so I assume it's the same study. A separate replication would be good though (even if only LC). I think this still hasn't been done, which of course doesn't help with acceptance and advancement of this pathology and its understanding. Perhaps behind the scenes other groups are trying to look at better ways of confirming / evaluating this abnormal clotting — eg a high-throughput clinical assay.

Of course much of this may be superseded if it's shown that upstream immunopathology leads on to abnormal clotting, which is where treatment would need to be directed. This may be an additional feature of LC, not seen generally in ME. Perhaps the spike protein causes this abnormal clotting separate to and compounding the viral mischief leading on to the typical ME picture. Regardless I still think that amyloid clotting will turn out to be an important pathology to define.

hibiscuswahine said:
What are the preliminary results looking like?
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Not sure if you mean preliminary results for reporting on apheresis treatment or preliminary results for abnormal clotting in pwME. If the latter, that hasn't been shared. I'm sure they realise that many people are watching closely and also pinning hopes on some equivalent or related findings in ME. No doubt they'll want to publish as effectively as possible (as well as as soon as possible). In the past they've often gone with placing papers on a pre-print server during the peer review phase. They may have decided it's better to publish definitively for this one. Either way, they haven't "teased" us with any findings.

 
Thanks, I am keen to see the result on how effective and safe it is and whether it will be a cost effective treatment for Aotearoa.

I was referring to Dr Proal’s work with Prof Pretorius in South Africa.
Fizzlou said:
https://www.tlcsessions.net/episodes/episode-18-professor-resia-pretorius-microclots

Podcast from The Long COVID Sessions
Episode 18 with Professor Resia Pretorius. She interviews well and explains many things from the research in a way I could understand.

Brief mention of MECFS and Amy Proal with study starting in January. (Abt 34 mins)

Lots of things that have been queried in this thread are covered in this episode.

Trypsinization, fibrinolysis , why coag tests come back normal, difference between these and clots, PEM, whether cycles of treatment needed, removing microclots by drugs or apheresis plus healing the vessels and possibly viral persistence in gut driving a continuing state etc
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AP doesn’t have a lab or an academic affiliation—so I wouldn’t count on any original research from her. She may continue to write low quality/low evidence review papers. It’s a free country. The problem is that the lazy/low IQ US media treats her as a MECFS “expert” (probably because she is active on Twitter), which is problematic.
 
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Can anyone enthusing about this approach explain to me how aphaeresis could possibly be of use?
If clots actually form in living people, which has not so far been shown, and they are big enough to cause harm, then they will last for no more than a few minutes at most. If so, how can apheresis to remove these clots work for more than a few minutes?

The whole story looks to me to be pseudoscientific. The fact that nobody other than Pretorius has reported anything by now (as far as I know) makes it pretty certain that haematologists as a whole see nothing worth replicating. The collaboration with Proal only confirms that.
 
SNT Gatchaman said:
As far as I can see HELP apheresis is only being offered if (in vitro) microclotting is shown, with the presumption by those using it as a clinical test that this is indicative of in vivo amyloid fibrin(-ogen) and fibrinolytic shutdown. From what I've seen reported, a "positive test" would be required for LC or ME patients requesting the technique.

Probably also worth noting at this point that things seem to have gone relatively quiet on the HELP apheresis front. It seems as if their waiting lists are still very long, but I haven't seen claims of long-term cure being loudly proclaimed from patients on Twitter etc.
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They are not testing for clots prior to offering HELP apherisis. I am in the FB group and patients have said this. They offer it to anyone who will pay for it.

The FB group (which claims to be manned by volunteers with no financial gain) still makes unproven statements about it being a cure. Many patients comment on the admin posts with their own stories of failed treatment — these are ignored by the admins. The patients who seem to have success are often people who only were ill 3 to 6 months. They have set up the group where only admins can post and patients cannot, and the admins are anonymous. I assume this is since the original admin was called out in that Vice media article.
 
Braganca said:
They are not testing for clots prior to offering HELP apherisis. I am in the FB group and patients have said this. They offer it to anyone who will pay for it.
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Ugh. Wow. I was commenting on what I believe they are doing at Mulheim (Dr Jaeger). A number of clinics have subsequently sprung up, including in other countries (eg Cyprus), which appear — one sec — where's the cowboy emoji? This of course was foreseen by many of the members here and specifically warned against. Sad to see it come to pass as you describe.
 
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