Is Apheresis an effective treatment for Long Covid and ME?

[MonkeyMan]

We all will know more after Dr. Jeager`s team published their findings.

Hi @SWAlexander, remind me please: when are the findings expected to be published?

 

[GlassCannonLife]

So are any pwME going through this therapy currently? I thought I saw above that they have successfully treated some that weren't long COVID.

Is anyone here going to go in soon?

Has anyone with ME been treated and the HELP-apheresis failed to resolve their condition?

 

[SWAlexander]

Hi @SWAlexander, remind me please: when are the findings expected to be published?

I wish I know. They just in the begnning stage.

 

[SWAlexander]

So are any pwME going through this therapy currently? I thought I saw above that they have successfully treated some that weren't long COVID.

Is anyone here going to go in soon?

Has anyone with ME been treated and the HELP-apheresis failed to resolve their condition?

I wish I could go to Dr. Jaeger but there are 7000 people waiting.

 

[GlassCannonLife]

I wish I could go to Dr. Jaeger but there are 7000 people waiting.

Do you know, or is there any way we can find out, if there are any ME people on that list?

 

[SWAlexander]

Do you know, or is there any way we can find out, if there are any ME people on that list?

I follow Dr. Khan on Twitter

 

[Countrygirl]

Do you know, or is there any way we can find out, if there are any ME people on that list?

Dr Weir is flying to Germany on Thursday to speak with Dr Jaeger and Asad about treating ME patients and to learn about the process. We will more about it by next weekend.

 

[SNT Gatchaman]

I'm pretty sure ME patients are now on the list, which must be well over the 7000 quoted just a week or two back. Unclear when some pwME might make it to treatment, but if it were effective I'm sure we'll hear about it from some of them via social media long before anything is published in the scientific literature.

I wonder whether Dr Weir will be assessing LC patients and formally diagnosing them as ME. That might be quite useful, although the million dollar question relates to long-term ME patients.

If shown to be effective, I'm really hoping that a pharmaceutical therapy will replace apheresis for the majority, as this would be too rate-limited given the vast numbers of LC, on top of all the long-term ME patients.

 

[GlassCannonLife]

@Countrygirl @SNT Gatchaman sounds good!

If it is truly a cure for ME then surely we'd see a large ramp up in the accessibility of the technology, it would restore millions back to the workforce so would probably be worth a bit of investment from governments etc

 

[SWAlexander]

I'm pretty sure ME patients are now on the list, which must be well over the 7000 quoted just a week or two back. Unclear when some pwME might make it to treatment, but if it were effective I'm sure we'll hear about it from some of them via social media long before anything is published in the scientific literature.

I wonder whether Dr Weir will be assessing LC patients and formally diagnosing them as ME. That might be quite useful, although the million dollar question relates to long-term ME patients.

If shown to be effective, I'm really hoping that a pharmaceutical therapy will replace apheresis for the majority, as this would be too rate-limited given the vast numbers of LC, on top of all the long-term ME patients.

If there are not already meds for therapy on the market, training for HELP-apheresis and refitting equipments would be more efficient, since most hospitals provide already kidney dialysis.

 

[SWAlexander]

Dr. Jaco Laubscher explains TEG and PFA 200 testing

Dr. Khan said:
Patients! Demand that your labs test your blood with TEG- and if possible PFA200
Early management of severe COVID-19 coagulopathy should be guided by TEG®, microclot and platelet mapping: https://www.medrxiv.org/content/10.1101/2021.07.05.21260012v4

 

[MonkeyMan]

So are any pwME going through this therapy currently? I thought I saw above that they have successfully treated some that weren't long COVID.

Is anyone here going to go in soon?

If you're willing to travel (or happen to live in Germany), an easy way to find a doc who will administer HELP apheresis is through the Braun website (https://www.bbraun.com/en/patients/renal-care-for-patients/renal-care-centers.html). I contacted 3 different centers in Berlin and found one who will do one session of treatment for 1300 Euros, but he can't schedule me till February or March.

 

[SNT Gatchaman]

If there are not already meds for therapy on the market, training for HELP-apheresis and refitting equipments would be more efficient, since most hospitals provide already kidney dialysis.

Possibly a couple of problems though. Refitting equipment may not be technically possible (I have no idea). But also, haemofiltration / haemodialysis machines are often a constrained resource already in many countries healthcare systems. They may already be at or close to capacity.

A regimen based on existing pharmaceuticals would be ideal. I think this is starting to be being evaluated now.

 

[junkcrap50]

Dr. Jaco Laubscher explains TEG and PFA 200 testing

Dr. Khan said:
Patients! Demand that your labs test your blood with TEG- and if possible PFA200
Early management of severe COVID-19 coagulopathy should be guided by TEG®, microclot and platelet mapping: https://www.medrxiv.org/content/10.1101/2021.07.05.21260012v4

He also said, deep in the replies/comments:

 

[junkcrap50]

Does anyone know of other communities that discuss specifically this treatment & pathology, HELP Apheresis & MicroClotting? I've read there is at least one facebook group dedicated to it, but can't find it. And I wonder if there are any others.

 

[junkcrap50]

A prepent of a case study of HELP apheresis on Long Covid patients by Dr. Jaeger.

Here is what the person who got a hold of it reportedly said about it:

Got it from one of the Covid Long-Haulers that is currently doing the treatment in Germany. She was one of Dr. Patterson's 8000 "success" patients, by the way, so it was an interesting story. She seems to have been experiencing some success with HELP, but it does not seem that every Long Hauler benefits from it, some got worse. This one seems to help those mostly affected by microclots.

 

[bensmith]

God damnit. Of course this has to be like every other treatment.

-helps some, some get worse.

at least the study you linked showed great success for those who qualify.

i wonder how common it is.

 

[SNT Gatchaman]

@bensmith One of the complexities in my mind would be the interaction between micro-clots and abnormal red blood cells. I think they've observed that some after treatment deteriorate - anecdotally they stopped pacing early and tried to be normal immediately.

I think this might relate to the 120 day lifespan of poorly deformable red cells. It's going to take 4 months for those to all clear and they need to only make good RBCs that stay good.

Remember Ron Davis said he thought every crash might restart the disease. Could even be that crashing tends to induce more micro-clot formation again. Much to learn over the next 3-6 months (I know we all want a cure now).

I suspect that apheresis and/or targeted anticoagulation might set you up for a slow, steady paced recovery.

If it were the case that long term ME patients also had micro-clots, then we might be in a much better position to control a recovery - being well practiced in the art of pacing and avoiding crashes.

All just conjecture.

 

[junkcrap50]

One of the complexities in my mind would be the interaction between micro-clots and abnormal red blood cells. I think they've observed that some after treatment deteriorate - anecdotally they stopped pacing early and tried to be normal immediately.

I think this might relate to the 120 day lifespan of poorly deformable red cells. It's going to take 4 months for those to all clear and they need to only make good RBCs that stay good.

No doubt there is some interaction between microclots & rbcs.

 

[SlamDancin]

@SNT Gatchaman One piece of anecdotal evidence that I’ve seen one other pwME say is that Nattokinase/Bromelain made me worse. I had to discontinue after about 10 days. Felt like a possible Herx reaction and felt flu like with heavy malaise. Went away after discontinuing and I’m back to baseline now after a couple days.

what do you think that could be about? I don’t notice the same with low dose aspirin but I don’t notice any positives either