The Occurrence of Hyperactivated Platelets and Fibrinaloid Microclots in ME/CFS, 2022, Nunes, Pretorius et al

I hope this doesn't involve taking 'natural' blood thinners (bromelain, nattokinase et), unmonitored, and assuming it's safe. Proper testing might not be available and some pwME will experiment on their own.

I took bromelain as a potential anticoagulant twenty years ago when hypercoagulation was a theory for pwME. I took the supplement for a few months before my blood panel was finalized and it really thinned my blood- I cut my finger once and it wouldn't stop bleeding. When my ISAC panel was finalized it was determined that I didn't have hypercoagulation. The head Hematologist here advised not to assume when taking blood thinners.

 

That is very interesting @Binkie4 that you feel better with heparin. It's my recall that David Berg's theory recommended heparin as a therapy.

Yes, agreed, it is very unfortunate that the research on blood for pwME has had such a stalled history. Frustrating, but not surprising given the managed lack of biomedical funding for ME.

 

My blood draws sound somewhat familiar to yours, @Ravn, but without the clots. They
have usually/most often been difficult. First to find a vein that doesn't wiggle away. Then finally to find one that at best, very reluctantly gives up blood. It goes better if I have lots of fluid before the blood draw. I sometimes use "blood-thinning" supplements. Surgery is another matter as of course no food or fluid for about 12 hours before the operation. Three times it's taken well over half an hour just to get an anesthetic needle into a cooperative vein.

Yes, I hope this study can be replicated.

 

I'm not sure what's going on, but it doesn't look like these are directly comparable. The controls in that earlier paper showed about five times higher average amyloid area %. So maybe the method was somehow different or maybe the control group was different.

 

Looking at their past papers, looks like they are claiming fibrin amyloid formation is present in migraine, T2 diabetes, rheumatoid arthritis, Alzheimer's, sepsis, septic shock, SIRS, and multiple organ dysfunction syndrome, acute Covid, Long Covid and now ME. That's just going off the titles of the papers, so I'm not sure how all these findings compare.

 

They haven't listed any this time but from one of the previous papers we know that Pretorius is director of Biocode Technologies.

Info from their website:

Some people from the "Team" section (these people are not among the authors of the paper, I'm just trying to illustrate what the company is doing):

 

Yes could be, I don't know the finer details of the methods but from the outset they look the same. So it could also be that their results are simply all over the place. I mostly posted it because some (e.g Ponting) seemed impressed by the large difference.

 

It would great if people who are on Twitter could ask some of the questions so that people who are now excited about those findings will see the questions, too.

Especially the questions about the number of patients that actually had clots and whether the samples were blinded?

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I also wonder about past Covid being an issue with these results. They say that patients were excluded if they had past Covid infection, but they don't say how and they don't report any serology results (though even that would not be definitive). I imagine in 2022 in South Africa where infection numbers have been very high and testing low, you're likely to have a fair number of people who had Covid and didn't know it in any group of 25 people.

Maybe ME plus recent Covid would give different results than ME alone, potentially helping explain why they found a wide range of results.

 

I had surgery two years ago and they had me have a drink of water before I left for the hospital and they gave me a drink of water about 15 minutes before the surgery. Current thinking is that patients have better surgical outcomes when hydrated.

 

Interested in what your investigations find @duncan . I too have below reference range platelet counts.

 

Strange behavior from the nurse. Why would a nurse ask a patient if their drawn blood looked right?

As others reported strange colors, viscous or actually clotting blood in their fresh blood samples, and also nurses that commented on it, did you ever ask the nurses for an explanation?

I mean, if this was very unusual or indicative of an illness, wouldn't nurses either know about it or be more alerted about it and curious to know?

 

I agree. I was told to drink juice first before a surgery that I had 6 years ago.

I'm going soon for another surgery, and I was told no food or fluid for 12 hours before the surgery.

Just this one issue, one of many, shows how slow and patchy the uptake on new and better medical info is.

 

It is entirely normal. If blood is taken from a small vein that can only provide a limited supply there is always a risk of clot formation on the needle or in the syringe. Venous blood is dark bluish purple anyway and if flow is slow it is likely to be more de-oxygenated. Colour has nothing to do with clotting.

 

It seems that dr. Pretorius is also involved in patents for treatments of blot clots in Alzheimer's disease, Parkinson's disease, and type 2 diabetes (this page, bottom).

 

I don't think there is anything new about this to be honest. Adequate hydration has been a priority at least ever since I was a medical student. It is normally addressed by using intravenous fluid.

 

Like the BPSers do.

I hope this isnt going to be another blind alley by researchers who want their theories to be correct and are not being rigorous/sceptical enough about them to really interrogate the theory/finding, rather than seeking to prove it.

 

Thank you @Jonathan Edwards.
The problem I've encountered with 3 various surgeries, is that the medical staff work for quite a while to get any needle into one of my veins. This with surgeons waiting, and the time ticking away.

In 2016, it was new to me to be advised to drink juice before the surgery. Other than in 2016, I've been told nil by mouth before surgery, including this upcoming operation.

I have the same problem with blood tests if I haven't sufficiently hydrated before the tests.
I don't mind needles, but sometimes it takes several tries for one session.

 

Hi Jonathan. I asked Doug Kell about this specifically, and he said that the experimentalists were blinded to case/control status.