The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

Trish said:
They look to me like well within the range of normal fluctuations, especially as it's a self selected sample with no information on length of treatment, what other treatments they are doing, length and severity of disease, and with much too small sample sizes to be statistically significant, no control group, no blinding, subjective outcomes etc. I suspect even CBT could show pretty graphs like this and would be equally misleading.
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There have been many similar polls, including from this person who has a PhD in pharmacy. They were pretty much all null and most had many negative reports. Mestinon seemed to be particularly disappointing. Almost all were busts, aside from antihistamines, IIRC.

The person behind this account has been doing this for several months now. It's an iterative process that first asked about many supplements and drugs and is now refining to stratifying with doses. This is how investigative work is supposed to happen, it's just not happening in our case because no one is authorized to do it.

The patient population is trying those drugs and supplements. It's happening because of the void of expertise, might as well learn from it. I've already seen people trying regulated drugs buying from gray market pharmacies. Again, this is the void forcing people to work around the system, just like it was done with AIDS.

It should be formal and official. But the void is here.

It's basically certain that nattokinase is not going to be a solution, it's a data point for what it does, showing potential mechanisms of action in some people. In this case it's an enzyme that seems to break down blood clots. It's a clue, likely not a final clue. Maybe an adjacent clue. But damn this is how investigations are supposed to work, following evidence, building on itself. Seems like medical research can't do this anymore.
 
rvallee said:
It should be formal and official. But the void is here.
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2 years, no findings published by the NIH, little in the way of real research and 140 million estimated have lost the ability to live. This is a consequence of medicines hubris on post viral conditions and its fraudulent use of Psychology that has utterly failed to treat the disease in any way. In that void, and its a big void after 80 years of doing almost nothing, its not a surprise patients are following the papers on findings in their bodies and trying things to see if it improves things. This wouldn't be happening if medicine was doing its job, the fact that the patients are organising themselves is precisely due to the void.

We can't really talk right now we are running polls on symptoms we suffer. Surely science already knows this and we have nothing to add to the discussion, right? Its irresponsible isn't it to be letting a self selecting poll of ME patients do this without proper medical controls, heck we have changed it in the middle and put up lists #2 and #3. Its filling a void and I can't help but feel this leads to a better listing and understanding symptoms moving forward. The questionnaire on trying things, the obvious follow up is what was tried and what worked. None of this would be happening if medicine was doing the job, very ill people do not start organising around other diseases in this way unless medicine has nothing to offer them. ME patients have at least two medical mixed with patients forums at this point with different approaches, how many diseases that have treatments do that? None.
 
Generally speaking there is no point in eating enzymes because they are destroyed in the stomach. I know nothing about this one but I suspect that applies.

If it has an effect on clotting that is potentially beneficial it very certainly will be dangerous if not taken at the optimal dose - which will not be identifiable by people saying they feel better.

I find it pretty strange that any academics should be getting involved in this if they are.
 
Jonathan Edwards said:
Generally speaking there is no point in eating enzymes because they are destroyed in the stomach. I know nothing about this one but I suspect that applies.

If it has an effect on clotting that is potentially beneficial it very certainly will be dangerous if not taken at the optimal dose - which will not be identifiable by people saying they feel better.

I find it pretty strange that any academics should be getting involved in this if they are.
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The void. I can't see it as a bad thing that some academics are willing to fill a void that is normally only occupied by us, where as @BrightCandle pointed out we are doing much of the same things: asking ourselves questions and refining those questions because no one is asking them formally. Hell figuring out the right questions to ask is the first step and we're literally working on this right now in other threads.

The potential here is dangerous, coagulation is kind of important. But there is a void. If not for the void, this would be happening in a structured process, or at least that's the idea. Not very compelling when we look at most of the research out there where you can have overlapping selection and recovery criteria or overlooking ethical requirements while no one cares, but that's the idea.

Although you did mention that one thing you learned is that there isn't a much better way to tell if something is helping than simply asking the patients if they're better. It's only a data point along the way and it only makes sense in early investigation, which this is.

There is at least one low-dose aspirin trial I can think of happening. It's a similar idea, although a different mechanism. Nattokinase seems to break down fibrin, while aspirin disrupts the clotting formation (AFAIUnderstand). But what this is an arrow pointing somewhere. I think of it like the cone of uncertainty in hurricane forecasting: the hurricane will likely not hit at the middle point, but it will hit at some point in the cone. But just having a cone is progress, we don't even have that yet.
 
I thought of an experiment that might be useful for the microclot theory: take samples from different parts of the body and compare numbers of microclots. For example, are there more microclots coming out of the brain than going in? Maybe they are originating in one organ, or certain muscle groups (maybe test before/after exertion). Maybe they originate where the blood connects to the lymphatic system.


My problem with the blood/vascular theories is that if that was the cause of our symptoms, shouldn't there be more evidence of changes in symptom severity depending on physical activity, drugs that affect blood viscosity or blood vessel diameter, and other such factors? I suppose there could be some functions of pericytes or other vascular cells that are not affected by such factors, but I think the probability is fairly low. My guess is that extra microclots, if they do exist in PWME or PWLC (long covid), they're just a symptom, rather than a cause.
 
Creekside said:
I thought of an experiment that might be useful for the microclot theory: take samples from different parts of the body and compare numbers of microclots.
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Please note that these microclots form in a test tube. They were not there in the sample of blood drawn. The blood is centrifuged so anything in it would have been spun out. There is no reason to think the size of the microclots has anything to do with anything in the body.
 
Jonathan Edwards said:
Please note that these microclots form in a test tube. They were not there in the sample of blood drawn.
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Oh, then why has there been any fuss about them? I didn't read any of the reports about them (waiting for some confirmed interesting findings), but just assumed that they actually found microclots in the blood, and/or other blood/vascular abnormalities. If they're doing some processing that causes microclots, and it reliably produces different results between healthy people and PWME or PWLC, then I suppose it still is worth pursuing, because any reliable marker would be valuable.

I could actually read the reports, but your comment doesn't make it sound like it's worth making the effort. I'll just keep waiting for some confirmed interesting findings ... that may never arrive.
 
The guy who originally found clots in Long Haulers actually found it in the microscope in drawn blood. Nowadays they have a process they can run to isolate the clots and show them on a UV test so that is what they are doing but originally this was found in a microscope looking at a cluster of Long Covid suffering athletes, by a sports scientist. Everyone called him a quack at the time and he got banned from Discord,facebook and twitter for misinformation after he posted his pictures and research paper. Maybe 6 months later the HELP Apheresis clinic started showing the same thing and pushing their therapy and now everyone has converged on this process for the seeing the clots. Originally though they were just found in blood on a student microscope, no fancy processing required.
 
BrightCandle said:
Maybe 6 months later the HELP Apheresis clinic started showing the same thing and pushing their therapy and now everyone has converged on this process for the seeing the clots.
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For some reason, the first thing that popped into my mind was "The Emperor's New Clothes". Someone people are impressed by (or want to impress) 'sees' something, and suddenly everyone else sees it too. Flying saucers? Crop circles? Witches?

Are these people only looking for them in PWLC, or are they searched for but not found in people with other diseases too? If they are just as common in people with the common cold, or overexertion, or a headache, then it's not a very important discovery for ME/LC research.
 
Creekside said:
For some reason, the first thing that popped into my mind was "The Emperor's New Clothes". Someone people are impressed by (or want to impress) 'sees' something, and suddenly everyone else sees it too. Flying saucers? Crop circles? Witches?

Are these people only looking for them in PWLC, or are they searched for but not found in people with other diseases too? If they are just as common in people with the common cold, or overexertion, or a headache, then it's not a very important discovery for ME/LC research.
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They have searched for them and found them in many conditions, including diabetes if my memory serves me right. Dr. Pretorius's research page highlights some of this. Thus, I'm pretty sure the clots are just a downstream effect, not a cause. It heavily discredits the psychosomatic theory but not much else.
 
Creekside said:
For some reason, the first thing that popped into my mind was "The Emperor's New Clothes". Someone people are impressed by (or want to impress) 'sees' something, and suddenly everyone else sees it too. Flying saucers? Crop circles? Witches?

Are these people only looking for them in PWLC, or are they searched for but not found in people with other diseases too? If they are just as common in people with the common cold, or overexertion, or a headache, then it's not a very important discovery for ME/LC research.
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Chris Pontings recent research showed the difference between control, LPS and Covid Spike clots and the various degrees of them. There is a chance they can start to tease out the difference in the clots between different conditions. Its definitely not something that just everyone has anyway, its something certain chronic conditions have including Me and LC.
 
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BrightCandle said:
The guy who originally found clots in Long Haulers actually found it in the microscope in drawn blood
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Is that actually the case? How did he see clots amongst the millions of red cells? I have not heard anything of that sort. Can you give a source or is this just hearsay? The process that uses UV light works with blood from which any original clots would have been centrifuged out as far as I can establish.


RedFox said:
They have searched for them and found them in many conditions, including diabetes if my memory serves me right. Dr. Pretorius's research page highlights some of this.
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The same group had found clots on spun blood in several conditions. But that is still clots that were not actually present in life as far as I know. And if they are present in spun blood from so many conditions it is a bit hard to know what they mean at all. I am afraid it makes no difference to the credibility of psychosomatic theories until it makes some sense.

BrightCandle said:
Chris Pontings recent research showed the difference between control, LPS and Covid Spike clots and the various degrees of them.
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Has Chris Ponting done work on this? I thought it was the Pretorius/Kell group again.
 
SNT Gatchaman said:
I read that as a request for info from the patient group. He's probably being asked by other patients about what brand is best - doesn't know - so puts it out to the patient group. I am not aware of any related drug trials involving this research team. They have obliquely referenced "nutraceuticals" in some of their publications.

And as Jo says, it is all pretty peculiar. I have observed a parallel, best effort attempt at data gathering by the patients. This is of course financially and technically unsupported and unrigorous (as often highlighted by those posting the data) but this is a new patient group in a dire situation, who are trying to help themselves — when help has not been forthcoming from authorities.

While we've talked about "microclots" in this thread and others, and it is highly unlikely to be the fundamental underpinning of LC (as proposed by this research group), hypercoagulability is very clearly an important feature of this disease (with evidence of involvement in ME too). Even in those without the ME phenotype, a large excess of cardiovascular events is occurring. Pathological amyloid clotting and platelet hyperactivation can explain a hypercoagulable state, despite standard clinical measures of coagulation remaining unhelpfully normal. This should be pursued, and yet funding for formal investigation was rejected.



So almost inevitably, you end up with —

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Is this individual just another verbose woo menace?
 
Ariel said:
Does anyone have any thoughts on this?
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Again, the pictures look like artefacts. One green lump is thousands of times bigger than all the tiny dots. I have no idea what these things mean but if the Pretorius system was used I would expect all bits of stuff like this to be spun out beforehand in the centrifuge. So what the size of these coloured bits means is anyone's guess.
 
My position is that Dr. Pretious's findings likely represent some actual different in the blood chemistry of pwME vs healthy controls, but is likely a non-specific sign and a downstream effect of other problems rather than a main driver of symptoms. Microclots are interesting, but I don't see them as a smoking gun pathology or biomarker like some on social media do.
 
Around 2.50 dr. Beate Jaeger claims that the treatment is effective for about 80 to 90% of the patients. Bold statements and claims.

 
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