The occurrence of hyperactivated platelets and fibrinaloid microclots in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)

[Rufous McKinney]

It's pretty shocking on s4me actually. Jonathan seems to just kill any conversation.

wandered over there and read most of that...good discussion.

My main comment at the moment....chinese herbs for blood stagnation are likely far safer than taking heparin.

And the foods which reduce blood stagnation. Purple, red pigmented foods. helpful.

Not pretending to cure anything, but they help. (and I'm not on the herbs right at this moment) but I've beefed up omegas and purple food and am having some improvement in baseline.

Every few days I'll take one proteolytic enzyme. I'm trying to very slowly work on detox and stockpiles of crap thats likely accumulated including in clots. I can really tell when I take an enzyme. Muscous thins...lungs improve.

 

[GlassCannonLife]

wandered over there and read most of that...good discussion.

My main comment at the moment....chinese herbs for blood stagnation are likely far safer than taking heparin.

And the foods which reduce blood stagnation. Purple, red pigmented foods. helpful.

Not pretending to cure anything, but they help. (and I'm not on the herbs right at this moment) but I've beefed up omegas and purple food and am having some improvement in baseline.

Every few days I'll take one proteolytic enzyme. I'm trying to very slowly work on detox and stockpiles of crap thats likely accumulated including in clots. I can really tell when I take an enzyme. Muscous thins...lungs improve.

What Chinese herb mixes are you taking atm for blood stagnation?

 

[mitoMAN]

It appears that Prof Pretorius cannot get her paper published. According to Prof Kell:

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Prof Doug Kell CBE #FBPE #FBPA #ABTV
@dbkell

First actual marker in a debilitating disease. "I am afraid we are not persuaded that these findings represent a sufficiently striking advance to justify publication in <some self-absorbed journal run by kids>" (Not even sent for review.) Onward and upward.

Can you link the tweet? I think it was removed

 

[SWAlexander]

Yes I know and I believe it is, at least in my case, possibly inherited. I have antiphospholipid syndrome (APS).
Is early childhood herpes the cause?

There is still a lot to be discovered.
- Is it genetic?
- What else has spike protein that causes clothing and inflammation?
The search must continue for preventative measures.

Dr. Pretorius mentioned "I think there are other autoantibodies not found yet that triggers microclots."
She also says: "#bc007 inhibits thrombin".

https://twitter.com/i/web/status/1534208976602152960

Yes, heparin and coumadin, etc dissolve clots. "Heparin for ME" https://livingwithchronicfatiguesyndrome.wordpress.com/2016/08/23/heparin-for-me/

Prof Doug Kell posted: "The spike protein triggers the clots."
https://portlandpress.com/bioscirep...RS-CoV-2-spike-protein-S1-induces-fibrin-ogen

The Coagulation Factors Fibrinogen, Thrombin, and Factor XII in Inflammatory Disorders—A Systematic Review
Results: We identified 43 animal studies dealing with inflammatory disorders and factors of the kallikrein–kinin or the coagulation system. Different immunological influences are described and novel molecular mechanisms linking coagulation and inflammation are reported. https://www.frontiersin.org/articles/10.3389/fimmu.2018.01731/full

 

[Rufous McKinney]

What Chinese herb mixes are you taking atm for blood stagnation?

I go to a chinese herbal expert and have a custom formula, a mix of...at least 39 herbs.

So its customized to my particular situation and individuals vary.

 

[tyson oberle]

Nattokinase made me dizzy, Lumbrokinase on the other hand made me feel clear and I found bromelain to fairly similar in terms of benefits but both I had to stop about 1 month in as my blood got too thin. Grape seed apparently breaks up platelet clots and I am still taking that, all of that is from the German clinic paper talking about things to try before physically removing the clots.

I did a google search for "grape seed" and I found either grape seed extract or grape seed oil. Is it both or just one of them that "apparently breaks up platelet clots"? And does the German clinic paper mention to try grape seed before physically removing the clots?

 

[andyguitar]

Yes, heparin and coumadin, etc dissolve clots. "Heparin for ME"

Apart from the micro clots the platelet hyperactivity might be significant and need treatment. There are drugs for it and one herb in particular could be worth looking at. Cats Claw ( Uncaria Tomentosa). Intersting to note that it has been used to treat me/cfs, with some reports of success. Often seen as being an anti-viral. But it has other properties...

 

[GlassCannonLife]

Apart from the micro clots the platelet hyperactivity might be significant and need treatment. There are drugs for it and one herb in particular could be worth looking at. Cats Claw ( Uncaria Tomentosa). Intersting to note that it has been used to treat me/cfs, with some reports of success. Often seen as being an anti-viral. But it has other properties...

Ah thank you! I had taken cat's claw for years without knowing this. I stopped a few months ago.. Maybe I'll get some more.!

 

[Rufous McKinney]

What Chinese herb mixes are you taking atm for blood stagnation?

This looks like a very good overview review article.

I will look at it in more detail over the next few days...(done reading fine print today)

https://www.hindawi.com/journals/ecam/2012/184503/

I would simply caution that chinese herbs are never taken alone. They are used in combination and customized for the patient. Which is why I must recommend you locate a good trained chinese herbalist...who should have 100s of raw herbs in their shop. If they don't you r not dealign with an herb expert.

 

[andyguitar]

Ah thank you! I had taken cat's claw for years without knowing this.

Did it help? One cause of platelet hyperactivity is Tissue Necrosis Factor alpa (TNFa) and Cats Claw is a TNFa inhibitor. Research into it is a bit slim and the effect might be small but after having gone through the research from Prof Pretorius I've been looking at herbs/drugs/supplements that are reported as being helpful and thinking that it might be the effect on platelets they have and not anything to do with their antiviral properties ect.

 

[GlassCannonLife]

Did it help? One cause of platelet hyperactivity is Tissue Necrosis Factor alpa (TNFa) and Cats Claw is a TNFa inhibitor. Research into it is a bit slim and the effect might be small but after having gone through the research from Prof Pretorius I've been looking at herbs/drugs/supplements that are reported as being helpful and thinking that it might be the effect on platelets they have and not anything to do with their antiviral properties ect.

I was doing a lot better before I got covid vaccines and then covid itself has completely destroyed me for the moment (very badly bedbound for 3 months so far). But I stopped cats claw sometime after the vaccines I believe.. Foolish.! I had also stopped andrographis around that time and that apparently helps vs covid too... ME is the illness of regret isn't it? Fuck me

 

[godlovesatrier]

Another ME not LC patient.

https://twitter.com/i/web/status/1536596480907165697

 

[Research 1st]

For people interested I found the following video with Dr Asad Khan (MD) who has had the 'Venous Oxygen Saturation' test performed and which he found was markedly low.

Video Source: YouTube
Video Title: Is (Micro) Clotting Causing Long Covid? | The role of H.E.L.P Apheresis.
NB: The interviewer is an LC patient the interviewee is Dr Asad Khan (pulmonary MD), who is suffering from LC and supports ME sufferers.

For those unable to watch the 40 minute video due to brainfog, here a summary specifically on the 'Venous Oxygen test' I thought some of the forum members may find helpful:

'Venous Oxygen Saturation' test:

1. Not a test a GP can perform.
2. Simple venous sample taken from peripheral blood taken with a blood gas syringe.
3. Without delay place sample into a blood gas analyser. (NB: Machines are found in ER departments, ICU, respiratory wards etc).
4) Test is non specific marker of oxygen transport (blood into tissue).
5) An abnormal test doesn't mean you have microclots, LC or ME or conversely, aren't sick.
6) You can have a normal value and still have the above conditions.
7) It represents the balance between two processes (ease of which oxygen diffuses into the tissues) +
Tissues may be performing anaerobically, full of lactic acid, hungry for oxygen which lowers venous oxygen saturation.
8) Tests is a reflection of imbalance between the two.
9) Good non specific indicator of being unwell.
10) Venous Oxygen Saturation Test is not related to a finger oxygen saturation monitor (96% oxygen+ in healthy individuals).
11) Venous Oxygen Saturation Test Median range for adult male is 73&.(Range: 65-75%, 60-80%). Dr Khan's was 32.

Timestamp for the above is 21:53 in the video.

 

[godlovesatrier]

Really interesting video.

Seen multiple tweets from people improving on natto and serraptase and help.

Which is great for them although feel like there will be little help to us overall.

 

[SWAlexander]

Abstract

We have previously demonstrated that platelet-poor plasma (PPP) obtained from patients with Long COVID/Post-Acute Sequelae of COVID-19 (PASC) is characterized by a hypercoagulable state and contains hyperactivated platelets and considerable numbers of already-formed amyloid fibrin(ogen) or fibrinaloid microclots. Due to the substantial overlap in symptoms and etiology between Long COVID/PASC and ME/CFS, we investigated whether coagulopathies reflected in Long COVID/PASC—hypercoagulability, platelet hyperactivation, and fibrinaloid microclot formation—were present in individuals with ME/CFS and gender- and age-matched healthy controls. ME/CFS samples showed significant hypercoagulability as judged by thromboelastography of both whole blood and platelet-poor plasma. The area of plasma images containing fibrinaloid microclots was commonly more than 10-fold greater in untreated PPP from individuals with ME/CFS than in that of healthy controls. A similar difference was found when the plasma samples were treated with thrombin. Using fluorescently labelled PAC-1, which recognizes glycoprotein IIb/IIIa, and CD62P, which binds P-selectin, we observed hyperactivation of platelets in ME/CFS hematocrit samples. Using a quantitative scoring system, the ME/CFS platelets were found to have a mean spreading score of 2.72 ± 1.24 vs. 1.00 (activation with pseudopodia formation) for healthy controls. We conclude that ME/CFS is accompanied by substantial and measurable changes in coagulability, platelet hyperactivation, and fibrinaloid microclot formation. However, the fibrinaloid microclot load was not as great as was previously noted in Long COVID/PASC. Fibrinaloid microclots, in particular, may contribute to many ME/CFS symptoms, such as fatigue, seen in patients with ME/CFS, via the (temporary) blockage of microcapillaries and hence ischemia. Furthermore, fibrinaloid microclots might damage the endothelium. The discovery of these biomarkers represents an important development in ME/CFS research. It also points to possible uses for treatment strategies using known drugs and/or nutraceuticals that target systemic vascular pathology and endothelial inflammation.
https://www.mdpi.com/1424-8247/15/8/931

 

[Sad Dad]

I'm reminded of Ron Davis' conclusions that there's something in the blood. Not only is this objective evidence of ME/CFS, but it offers possibilities for treatment.

 

[Wishful]

The followup question is: "are hyperactivation platelets similarly found in other immune activation states or diseases?" This may just be a common indicator of certain types of immune response.

 

[SWAlexander]

The latest post by Prof Resia Pretorius https://twitter.com/resiapretorius

Thanks @newscientist for highlighting ME/CFS. This is an example of a post-viral disease that was neglected for decades. Similarly, researchers have been saying for decades that Alzheimer’s may have viral and bacterial origins. We have been ignored: Watch this space!
@dbkell

https://twitter.com/i/web/status/1553083689642430464

We do not suggest it is the cause of the disease, it is the *result* of post-viral illness - as is platelet hyperactivation and eventually widespread systemic vascular disease.

https://twitter.com/i/web/status/1553088377465065472

 

[Consul]

Microclots in mecfs not as severe as in diabetes 2 the paper says.

 

[BrightCandle]

Gez Medinger has a 4 episode series on microclots, the evidence and the treatment.