Aphaeresis/ Apheresis (for removal of microclots)

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'

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?

 

What is the most likely explanation for their observations so far?

 

I have no real idea but the first thing I would think of is some sort of laboratory artefact due to the way they are processing the blood.

 

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

 

@Jonathan Edwards this also reminds me on the informative study you once referenced:

https://www.s4me.info/threads/immun...id-factor-epitopes-2019-maibom-thomsen.12294/

There its shown that slight heat treatment of pure plasma creates sediments in vitro because of autorective antibodies connect to deformed proteins.

 

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.

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

 

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.

 

Yep. Isn't it dreadful that there is no treatment available on the NHS when you can go to Germany and pay£6000 for an ineffective procedure.

 

Reisa Petrious is on fire. Already with a preprint of a experimental drug treatment:

https://www.s4me.info/threads/combi...h-long-covid-pacs-2021-pretorius-et-al.24029/

 

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

https://twitter.com/user/status/1528434703174455296

 

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.

https://twitter.com/user/status/1528361590696845313

 

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

 

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.

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.

https://twitter.com/user/status/1517750312207106049

 

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.

 

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.

 

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.

 

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.

 

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.