Is Apheresis an effective treatment for Long Covid and ME?

[GlassCannonLife]

Guys, the 20% is the rate of CURED patients. And the cure of P.E.M. etc. refers to them. The rest make massive improvements. 10% do not respond. That’s quite an effective treatment… I haven’t heard of sth like this before …

Furthermore, there is a team of docs who want to save us. They want us to get better. I personally know one of the researchers and he works 7 days a week on this. Pretorius has done some serious research on Fibrinogen, von Willebrand Factor (VWF), SAA4, and plasminogen and α2AP —> blood clotting
See here:

https://www.medrxiv.org/content/10.1101/2021.05.21.21257578v2.full-text

I really dislike the tone of some members of this board towards researchers. If you bully them down, then solve this disease! Make it better!

I have an appointment at Dr. Jaeger's clinic on Friday and get an apharesis. I will report back.

That's so exciting Martin! Good luck

 

[Martin aka paused||M.E.]

That's so exciting Martin! Good luck

Thank you

 

[junkcrap50]

TEG Explained - Understanding the Thromboelastography

This test is hard to find (in the US at least) and if it is available, it is only performed on hospitals usually in a critical care situations. However, the 2 largest hospitals in my city did have it, but only for inpatients. However, one hospital sends the blood sample to the city's blood bank to perform the test. (You need a special standalone machine that has several brand names to do it.)

I haven't called my bloodbank to confirm this or see what's necessary to get one done there. But blood banks do perform a lot of specialized lab tests for blood / hematology. And they have a lab in house anyway to check donations. So I don't see why it would be inconvenient for them to do.

Check your local blood bank to see if they perform the Thromboelastography (TEG) test.

 

[keepswimming]

Is it really a "off-topic to discuss"?
I mentioned cortisol several times before. Nobody seems to have been tested.
How many ME/CFS with low energy ever had a cortisol or VLCFA test?
And yes, cortisol normal range 8-25. Some say 10-25 is normal.

I had a cortisol test prior to being diagnosed with ME/CFS, my doctor was doing various tests to rule out anything else. I don't know the exact result but I know it came back normal.

 

[keepswimming]

I have an appointment at Dr. Jaeger's clinic on Friday and get an apharesis. I will report back

I saw on Instagram that you have got an appointment with Dr Jaeger Martin. I'm so glad she is seeing you. I hope so much that it helps you.

 

[Martin aka paused||M.E.]

I saw on Instagram that you have got an appointment with Dr Jaeger Martin. I'm so glad she is seeing you. I hope so much that it helps you.

Thank you very much!

 

[SNT Gatchaman]

Just to comment that Prof. Pretorius is noting that TEG has limitations for diagnosis - probably more useful for monitoring response (and ensuring patient not hypocoagulable at outset).

https://twitter.com/i/web/status/1461188609701302272

 

[Countrygirl]

Prof Pretorius has tweeted this today:

Resia Pretorius

@resiapretorius

Just a quick update for everyone on our work in Mulheim. We are using microscopy and TEG to follow patients before and after treatment by Dr Beate Jaeger. She uses HELP apheresis, and medication to calm platelets and remove microclots. We are seeing most encouraging results!

4:15 AM · Nov 18, 2021

 

[Countrygirl]

Please sign this petition to secure the use of this drug for ME and Long Covid patients:

https://www.openpetition.eu/petition/online/funding-for-bc-007-drug-against-long-covid-and-me-cfs

FUNDING FOR BC 007 DRUG AGAINST LONG COVID AND ME/CFS

 

[Breagjam]

Please sign this petition to secure the use of this drug for ME and Long Covid patients:

https://www.openpetition.eu/petition/online/funding-for-bc-007-drug-against-long-covid-and-me-cfs

FUNDING FOR BC 007 DRUG AGAINST LONG COVID AND ME/CFS

Done!

 

[keepontruckin]

From someone in the know i heard not to get my hopes up too high on this. I was told the drug does not hurt but it is not helpful either.

 

[SWAlexander]

Please sign this petition to secure the use of this drug for ME and Long Covid patients:

https://www.openpetition.eu/petition/online/funding-for-bc-007-drug-against-long-covid-and-me-cfs

FUNDING FOR BC 007 DRUG AGAINST LONG COVID AND ME/CFS

signed.

 

[bensmith]

@keepontruckin the bc007?

 

[SWAlexander]

TEG®, Microclot and Platelet Mapping for Guiding Early Management of Severe COVID-19 Coagulopathy

Abstract

An important component of severe COVID-19 disease is virus-induced endothelilitis. This leads to disruption of normal endothelial function, initiating a state of failing normal clotting physiology. Massively increased levels of von Willebrand Factor (VWF) lead to overwhelming platelet activation, as well as activation of the enzymatic (intrinsic) clotting pathway. In addition, there is an impaired fibrinolysis, caused by, amongst others, increased levels of alpha-(2) antiplasmin. The end result is hypercoagulation (proven by thromboelastography® (TEG®)) and reduced fibrinolysis, inevitably leading to a difficult-to-overcome hypercoagulated physiological state. Platelets in circulation also plays a significant role in clot formation, but they themselves may also drive hypercoagulation when they are overactivated due to the interactions of their receptors with the endothelium, immune cells or circulating inflammatory molecules. From the literature it is clear that the role of platelets in severely ill COVID-19 patients has been markedly underestimated or even ignored. We here highlight the value of early management of severe COVID-19 coagulopathy as guided by TEG®, microclot and platelet mapping. We also argue that the failure of clinical trials, where the efficacy of prophylactic versus therapeutic clexane (low molecular weight heparin (LMWH)) were not always successful, which may be because the significant role of platelet activation was not taken into account during the planning of the trial. We conclude that, because of the overwhelming alteration of clotting, the outcome of any trial evaluating an any single anticoagulant, including thrombolytic, would be negative. Here we suggest the use of the degree of platelet dysfunction and presence of microclots in circulation, together with TEG®, might be used as a guideline for disease severity. A multi-pronged approach, guided by TEG® and platelet mapping, would be required to maintain normal clotting physiology in severe COVID-19 disease.
https://www.mdpi.com/2077-0383/10/22/5381

 

[Countrygirl]

 

[paul80]

I've not read the whole thread, i can't read hardly anything any more without headaches. but shouldn't we all be on blood thinners? I am constantly gradually getting worse, and i'm wondering if thinners would stop me getting any worse.

Also it can be dangerous to have thin blood but if you have thick blood and you take them you wouldn't have thin blood, just normal. Does that make sense before i say it to my doctor?

 

[bensmith]

@paul80 iirc blood thinners wont work, since it’s a different mechanism than normal clotting.

 

[paul80]

@paul80 iirc blood thinners wont work, since it’s a different mechanism than normal clotting.

Dr Khan talks about thinners at about 34.20 in this video.

He seems to think it's worth trying. I wonder if there are any side effects though.

 

[bensmith]

@paul80 yeah its certainly worth trying. I’m trying it with spicy food atm to some extent. But many with cfs are already on blood thinners, wouldn’t put too mucb stock in it. But by all means its prob not too hard to Get the meds.

 

[perrier]

Martin has been on twitter
He says he has no clots or fibrin in the blood
He did first treatment
Any further news?
We wish him all the best in the world!