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

Indeed -
I'm in favour of researching anything that improves the health of people who are ill - may turn up something but I'd have thought a disrupted pathway (vitamin K2 or whatever) would have been flagged up in other studies.

 

A couple of recent articles on nattokinase —

Effective management of atherosclerosis progress and hyperlipidemia with nattokinase: A clinical study with 1,062 participants (2022)

Degradative Effect of Nattokinase on Spike Protein of SARS-CoV-2 (2022)

 

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.

https://twitter.com/user/status/1547978525331693571


So almost inevitably, you end up with —

https://twitter.com/user/status/1574343049630871552

 

I don't understand why they(including Doug Kell) are including pwME to this mix? It has be researched and proven that this is not what is occurring in M.E.

 

And in doing so endorses the use of this as a treatment. To me this is seriously problematic on an ethical level and something that we have seen before with various people promoting, or seeming to promote, various 'treatments' before there is good evidence that they are safe and actually work.

 

Yes, he could have not amplified, but it seems like a cat-out-of-the-bag situation — and there's no gatekeeping on these agents. People are encouraged by whatever level of evidence is available to them and reinforced whenever anecdotal posts like the following are made (which may of course be natural recovery for many) —

https://twitter.com/user/status/1577026068133085184

https://twitter.com/user/status/1577285444408004610

 

We've seen the 'everybody else is talking about it so where's the harm' type of argument before and for people who are in a position of potential influence it should be no defence at all, they should be exhibiting a reasonable amount of self restraint for the good of the patient population that they claim to be concerned for.

 

Swansea Bay Health News: Hospital team discovers why a routine treatment for severe Covid-19 can fail Also posted here.

See also this thread

 

Already published first set of results of this survey on Twitter on Nattokinase brand comparisons and dosage - https://twitter.com/user/status/1579052732484575233

 

I can see absolutely no way this could spectacularly backfire.

 

Interesting result. Done and delivered quicker than it would take to sign the paperwork to get preliminary approval for a formal study. Even with dosage. Can't even think of a study that had such stark results.

In the early days, say the first year, of Long Covid, there was a flurry of experimentation with different drugs and Nattokinase is one of the few that stood the test of time, antihistamines being the other. Almost nothing else survived the experiment phase.

Variously I did see the odd mention of psychoactive drugs like SSRIs, but I basically saw all of them mentioned, none stood out, and it seems probably related to immunological processes, which IMO is likely the only relevant mechanism of action for all those drugs. The very name antidepressant is very misleading, a historical blunder.

 

How bizarre LongCovidPharmD going on about herxing in her replies.

 

I did a quick search for "herxing" on this site and our colleague site. Just a few hits here, mostly in relation to (feisty) historic discussion about some near-fatalities with the Marshall protocol. Lots of hits on PR. I wonder whether the term "herxing" has been more broadly adopted by patients. Language evolves to suit needs I guess.

A relatively recent review article: The Jarisch–Herxheimer Reaction After Antibiotic Treatment of Spirochetal Infections: A Review of Recent Cases and Our Understanding of Pathogenesis (2017) indicates that the mechanism is not understood, so maybe this effect might have a broader aetiology? It seems like an interesting aspect that would be good to understand more fully in the above context.

 

Social media moves more quickly than established systems for formal trials? Of course it does, that should be no surprise to anybody. And what should not surprise anybody is that a quick Twitter poll, which will be open to all kinds of bias, on the efficacy of an alleged treatment should not be put forward as being as reliable or as worthwhile as a formal study.

 

The term herxing comes from Lyme-patients I think. It's used to describe symptoms flaring from excessive die-off of Lyme-spyrochetes during treatment. As for the scientific basis of all of it I don't know, but I know it's used in that context.

 

The term herxing has been used for decades by ME/CFS patients. It has been used for every type of response, from taking supplements to medications, social media encourages people to continue the treatments b/c 'something' apparently is 'dying off'.

An immune response if not the same as die-off, in fact it can make you worse.

 

Regular academia is capable of moving this quickly, it's pretty much the norm in early stage research. Getting research grants to do RCTs is not supposed to be the first step in research, a problem with chronic illness research is that no one has discretionary budgets they can use for it to do this kind of quick iterative work.

This is hypothesis-generation. It's supposed to be quick. RCTs are supposed to follow much later, when there is a firm hypothesis that deserves to be tested rigorously. This here is supposed to be how it works, we just don't have it, there is not a single tenured professor of chronic illness that can use their own departmental resources to do this kind of work. The pragmatic trial paradigm is basically 99% waste when used to generate hypotheses.

That's the whole issue with NIH and not funding exploratory research. They usually come in long after this preliminary work has been done. We just never had anyone allowed to do it, so here someone is just going ahead and doing it.

 

No, it's not. It is encouraging desperate sick people to take something that they think is a treatment, and to report back in order to influence other people as to what the 'right' dose is. It's unethical and dangerous. We've seen it before with various 'cures', and no doubt will see it again, but let's not try to paint it as something it isn't.