Aphaeresis/ Apheresis (for removal of microclots)

The first serious(?) adverse event I've heard about (on Twitter)

 

Concerning, could you post the tweet? Of course people have ongoing complications with their covid infection at any time and may or may not be related to the apheresis but interested in knowing more.

 

@hibiscuswahine

https://twitter.com/user/status/1461794788026552320

 

Oh great, now the factions are fighting

 

I got the impression one of Dr Patterson’s LC protocol followers (or patients from his LC clinic) has gone to have apheresis in Germany. I presume the clients do not stay at the private clinic between treatments otherwise it would be a private hospital and generally be able to deal with any complications from the treatment or pre-existing conditions. So something has happened when person back in accommodation or something the clinic could not treat or investigate so had to go to ER, and possibly because of language barriers, had to call Dr Patterson to confer, possibly over the complicated medication regime or for reassurance, very hard to know.

 

https://twitter.com/user/status/1461557015776530434

 

https://twitter.com/user/status/1462843635314139137

 

Is he being treated for ME or LC?

He says he no longer has chest pains, able to breathe easily now and 'improving'.

 

He has long covid, he is part of the treatment group for the Pretorius study, according to twitter.

 

Tweet deleted. Twitter is frustrating sometimes.

To whom was it referring?

 

Dr Fabrowksi, a GP/ED Dr from the UK according to his twitter description.

 

https://twitter.com/user/status/1465153456486989825


I wonder how many Twitter spats will happen between now and when either team publishes a treatment study?

 

https://www.youtube.com/watch?v=y-fZMS4Cu5M

For information: Professor Pretorius webinar on hypercoagulation and apheresis. The main part that discusses Apheresis is from about 17mins. No results discussed from Germany but hoping this stimulates multicenter trials.

 

https://twitter.com/user/status/1467566510000553993


complete TV documentary about Longcovid (only in German): https://www.daserste.de/information...endung/hirschhausen-corona-ohne-ende-100.html

 

So they are going to publish their results in early 2022. Looking forward to it because I have to increasingly deal with people in my FB group who already present this as the known mechanism and cure not only for long covid but ME/CFS.

I have no problem with this direction of research though, I'm waiting patiently to see how this turns out but there is indeed a "dangerous" level of hype around it.

What I was less comfortable with is what Dr Khan said about unproven treatments. Something along the line of doctors being too defensive and less likely to try them while there are so many people in need of a treatment right now. I think he meant well but I also think statements like this can be interpreted in ways he may not have intended.

 

I will attempt to expand on this, based on other live lectures Dr Khan has given. Please note I am not taking a position on this, just conveying my recollection and interpretation. I want the mechanisms to be understood scientifically and the treatments to follow, backed up by solid clinical trials.

---

He is coming from a position of patient concern, knowing that many are suffering immensely right now, just as he had. He recognises that currently, LC (and ME) patients are taking their own lives or ending up in psychiatric wards. He views the BPS history and continued dominance as a crime (and I imagine many here might agree with that view). He also voices the concern that delay to treatment might mean that there is reduced potential for complete recovery (not known, but a valid theoretical concern).

He then promotes anti-platelet therapy on the back of a demonstrated mechanism of abnormality (hyperactivated platelets, microclots). Noting the understandable concern of bleeding risk (including GI bleeding and intracerebral haemorrhage), he asserts that the point is not to reduce platelet function below normal (eg as with coronary stents), but to calm hyperactivated platelets back to normal. In this way there would not be an increased bleeding risk. He states that the German / SA clinical team (that Prof. Pretorius, researchers from Max Planck and others are now working alongside, on the basic science) have not seen a single bleeding event (100s of patients, data still to be published - hopefully soon).

The patients are screened for hypercoagulability first - or at least to ensure they are not hypocoagulable and this is monitored. This could be being used as a proxy for demonstrating micro-clots directly. I think we need their confirmation by direct demonstration to be as easy and cheap as possible, and this is being worked on.

He wants medical authorities in all countries to not delay, to get on with validating and implementing biomedical diagnostics and treatments and cut the damaging and ineffective BPS "therapies". But if the systems are stuck, he is encouraging individual doctors to take a leap of faith in what their team have already shown (both in the initial accepted scientific papers and the so-far unpublished data they are describing). This is @Wyva's very reasonable concern.

He has said that the line "leap of faith" is troubling for him as a clinician, even if not previously a researcher, trained to work from the scientific method.

---

Some editorialising comments from me (and I hope it's acceptable to link to public summary PR posts):

Dr Jaeger in Mülheim has tried to publish her results for months and the journals refuse. It would be good to have clarity over that decision making.

The longer this goes on, the harder it's going to be to do placebo-controlled trials. Patients are presumably going to be less inclined to sign up for the possibility of placebo treatment, when they are constantly reading that treatment works. I don't know if cross-over trials could be designed to adequately overcome this.

Everything about the correct path of evidence-based medicine in ME (and by extension LC) has been subverted for decades. Overcoming the medico-political inertia and getting back to that correct path is a major challenge. It would not surprise me that a "wrong" approach turned out to be the way to scientific self-correction and enlightenment. It's almost as if the process was so far gone that it needed to be knocked even further, in order to wrap-around and finally regain its proper domain.

I have a suspicion that standard placebo-controlled double-blinded RCTs are not going to be able to work well for this - or at least not work as fully intended. I think they'd be set up but be forced to break early as the treatment arm early observations would be too compelling to ethically proceed. Even cross-over studies will be tricky as blinding is near impossible when there are reports of eg rapid obvious neurological improvement. I commented on this some weeks ago - though I got in trouble! I will risk trouble again by referencing the following anecdatum that has been published publicly elsewhere —

A young woman, 7 years bed-bound with severe ME (post EBV I believe). Has completed 4 cycles of apheresis (+medication?) and over subsequent weeks has now regained the physical fitness to walk up to 15 km. [Good that she got over her abnormal beliefs ]

Following the interim report on his visit to Mülheim three weeks ago, Dr. William Weir has now officially joined this research team.