Aphaeresis/ Apheresis (for removal of microclots)

No - but I'm keeping my eye out. The only comment that would seem to relate was Dr Rhona Maclean (NHS Haemostasis and Thrombosis Consultant) who basically said to "watch this space", which we noted here.

I think Asad is pushing hard, for obvious reasons, but "conclusively demonstrated" is just too strong currently. At this time, my suspicion is they'll replicate amyloid "micro-clot" findings in vitro in the two UK centres and people will be satisfied it's a real finding. They may get evidence supporting their presence in vivo. There was a hint of this from Martin Krater a few weeks back, looking with high throughput single-cell mechanophenotyping / microfluidics.

Then you have the multiple postmortem findings and the HpXe-MRI lung studies directly and indirectly showing microthrombi, so the evidence is building. The Pretorius hypothesis places circulating microclots centrally in the cause of long Covid. I think that's unlikely. No question hypercoagulability is a big feature in acute* and chronic Covid. Perhaps it's a double whammy on top of immunometabolic derangement: something specific to this virus, and maybe the spike protein in particular. But I think there's more to the stories of EBV-related immune derangement, autophagy dysfunction, nitric oxide and all the other things we're tracking. Anecdotally too many LC people seemed to have a significant EBV history as youngsters, myself included (though I may be biased to taking note of this).

* Just today I heard of a distant relative (late 40s) now intubated after a catastrophic stroke. No pre-existing health concerns; but "incidentally" found to be Covid-positive.

 

One hour documentary about this on Germany's first channel at a prime time slot - 8:15 pm. Watching it now.

 

https://www.ardmediathek.de/video/h...0OWExZDYtODFjYi00N2U3LTg2MzYtZDYwZmMyOTU5Njk1

 

The following article warns about being encouraged to try HELP apheresis by the above documentary:

https://www.tagesschau.de/wissen/gesundheit/long-covid-blutwaesche-101.html

And notes that there is a waiting list of 8000 long-covid patients queuing up to pay Dr Jaeger 3,000 euros a go to have their blood washed. I'm pretty good at maths but I've just checked on my calculator anyway because I found the result so shocking - that means 24 million euros coming Dr Jaeger's way for performing an unproven treatment on desperate patients.

 

Jesus and Mary. And it's an unproven and not necessarily safe treatment. Anything that invasive comes with risks, and should require good clinical justification before sign off.

I don't see any justification at all until it's gone through Phase III and shown benefit. I'll cheer as loudly as anyone if it does, but till then...

 

It really is just like not a single lesson was learned from the AIDS crisis. Literally not a single one. Despite all the marketing and self-congratulating about it.

When you abandon sick people, they will try anything to get better. Stop. Abandoning. Sick. People. Damnit!

 

I get the impression her clinic is quite small--I doubt the can even serve 8k people in a reasonable span of time.

Yes, please, clinical trials. Nobody should be shelling out that kind of money for a treatment that hasn't been through a single blinded trial.

 

Google translate:

Long Covid -- Questionable blood washing therapy


I won't be able to watch the documentary any time soon, so can't say whether it sufficiently warns against the intervention. But from the Tagesschau report, it seems to be one-sided and misleading:

Some quotes from the Tagesschau's report about it:

"In the film, the well-known TV doctor presents blood washing (HELP apheresis) as a possible therapy that can promise a cure. In desperation, several patients in the Hirschhausen film have this therapy done, with success. But there is no serious evidence for the effectiveness of HELP apheresis against Long Covid - and reputable medical associations even expressly warn against it.

"The film really gives me a stomach ache," says Carmen Scheibenbogen, head of the immune deficiency outpatient clinic at the Berlin Charité. She is interviewed in the film as a scientist researching Chronic Fatigue Syndrome (ME/CFS). She says: 'I'm concerned that the film will lead to many patients in their desperation taking money into their hands and having HELP apheresis done. A market has developed there."
[...]

"Professor Welte from the MHH considers HELP apheresis in long-Covid patients to be nonsense. 'Why should you lower blood lipids? That's not plausible.' With Long Covid there are extreme placebo effects, says Welte. 'If someone pays a lot of money for such a blood wash, then that often helps with the healing.'

"Scientific societies even warn against this therapy. The German Society for Nephrology, which sets the guidelines for apheresis treatment in Germany, came to the conclusion in its statement in August: "Without well-founded scientific data, no recommendation for the implementation of these therapy methods can be made, also because their improper use can lead to serious complications."

"In his reply to NDR and SZ, Hirschhausen, on the other hand, refers to another sentence in the statement, in which the authors "welcome" it when data is systematically collected from apheresis patients and entered into a register. The guideline for doctors on the treatment of long and post-Covid states: 'Even if there may be positive case reports and small case series, general use is currently strongly discouraged.'

"The apheresis expert Kielstein finds it 'misleading' that the film only mentions the success of the treatment. Unlike in the film, long-Covid patients who are not feeling any better after HELP apheresis keep coming to his clinic.

"But Hirschhausen not only fails to talk about the side effects and failures of apheresis. He even washes his own blood. According to his own statement, he has no Long Covid at all."
[...]


One of the statements from one of the other cited clinicians is a bit weird, though:

That seems to be a strange understanding of what actually happens. It shouldn't be necessary to explain to a professor of medicine that outside a randomized controlled trial it's not possible to differentiate whether recovery is due to the intervention or due to natural recovery coinciding with the intervention.

Also, feeling better short term is not 'healing', nor is reporting bias.

I feel quite relieved that Prof Scheibenbogen is quoted as someone warning against the hype.

 

Yes, I think it is very good to see Carmen making a strong statement on this. So few others are.

 

It’s a shame that takedowns of dubious remedies provide air cover for this sort of thing:

With Long Covid there are extreme placebo effects, says Welte. 'If someone pays a lot of money for such a blood wash, then that often helps with the healing.'

Edit: apols MSEzperanza, missed that at the bottom of your post.

 

Annoying. If that were true then alternative medicine would work and of course it doesn't. I don't understand how people can reconcile this obvious contradiction. If this placebo effect were so powerful it would basically work all the time for basically anything as long as the ritual of healthcare is convincing. It's not a coincidence that figuring out "how it works" is still basically where things stand, also the "diminishing" effect of placebo over time, which is expected for any illusion.

If it really worked all you'd need is convincing actors doing fake ritual motions and whatnot. This is obviously not the case. Especially whenever someone talks about a powerful effect, since by definition the "placebo" is the least possible effect in medicine, that's why it's the name for the comparison for no effect.

I think that this if it's admitted that all of this fake "placebo" is just an illusion, it would also bring something no one wants: the inability to attribute improvement to useless treatments, or even worse, the "white coat effect", which is obviously nonsense. All of this is chance, we can't keep track of everything and account for everything, medicine is pretty much at the bottom of being able to account for "all other things being equal".

 

Prof Scheibenbogen has followed up (I caught the re-tweet from Martin Krater). Here she is criticising some aspects of the above article, in which she was quoted. I think she wants to emphasise that proper trials need to be funded.

https://twitter.com/user/status/1582459955201785856


In reference to the subsequent article here https://medwatch.de/erkrankungen/long-covid-wo-hirschhausen-falsch-liegt-und-wo-richtig/ last portion translated to —

But Hirschhausen also emphasizes this. Clarifying what really helps "needs a clean study - and crazyly it doesn't exist," he says in the film - and with similar words he emphasizes this again and again and again. Health Minister Karl Lauterbach (SPD) confirms this view when he complains in an interview with Hirschhausen that there is no treatment for long Covid sufferers: "Not enough research has been done."

This is also the big concern of Carmen Scheibenbogen, the head of the immunodeficiency outpatient clinic at the Berlin Charité. She appears in the article of the Süddeutsche Zeitung as an essential key witness. A quote from her - "The film really makes me stomach ache" - made it to the headline. Which is strange simply because Scheibenbogen also appears in detail in the film von Hirschhausen, which in turn is an honorary member of the Charité.

In fact, Scheibenbogen does not agree with the presentation of the Süddeutsche Zeitung (SZ). "The article does not reflect my position," she says on the phone. Instead: "I think the film is very good and very important." She sees her point well conveyed in it: "We have a big problem: There are many patients, but no therapy. People are left alone with it. Actually, it's quite simple: If the evidence is missing, we have to provide evidence." According to Scheibenbogen, their "abdominal pain" referred to the danger that "patients could enter into untested therapies for a lot of money." An aspect that takes up a lot of space in the film and is at the center of the critical reporting of the SZ. SZ author Christina Berndt emphasizes that the scientist authorized her quotes in context. According to Berndt, she did not claim afterwards that it had not been reproduced correctly.

The annoying thing about the post-film debate is that the criticism - as justified as it is in parts - is too much on the subject of blood washing. In doing so, she obstructs the view of the much more important topic, which is also clearly the concern of the film. So far, we know far too little about Long-Covid and much less about the therapy of those affected - the same applies to the unknown high number of people who have already contracted chronic fatigue syndrome ME/CFS before the pandemic. With whom do the complaints disappear by themselves? In which case, on the other hand, drug or other therapeutic approaches are needed - and when is which treatment promising? This requires scientific evidence - which is missing today. What are the hurdles for research? Where is there a lack of money for clinical trials, where are regulatory hurdles in the way? This discussion is worth having, because only then can a reliable prospect of help for those affected arise. We should not forget that the reason why people cling to every straw out of despair lies first and foremost in the lack of secure knowledge. We should change that.​

 

https://twitter.com/user/status/1651252302471217152