USA: Mount Sinai PACS clinic and Dr Putrino

A long Twitter thread by David Putrino, with some possibly valuable points but also many very worrying points not based on current evidence with statements such as "we know that many people with #LongCOVID and chronic #lyme are sick because of persistent pathogens", "Similarly, for those with IACCs, the triggering pathogen HAS to matter", "Similarly, we know that many pw #LongCOVID, chronic #lyme and #MECFS have co-infections. In fact, some evidence even exists showing that some persistent pathogens may not even be that bad until they’re running with the wrong crowd, so even though your most recent infection pushed you into the chronic disease state, it may well be the combination of persistent pathogens that is the problem", "scientists who are “IACC-literate” have done to develop meaningful strategies to manage MCAS, mitochondrial dysfunction, POTS, chronic pain, cognitive impairment, endothelial dysfunction and other symptoms have been game-changing for many of our patients."

https://twitter.com/user/status/1811017747662241855

 

I enjoyed the thread. There's definitely an emerging consensus among certain scientists in the US that there is a persistent pathogen (or pathogens). Do I think that's 100% likely to be true? No, the hit-and-run hypothesis is still plausible. Do I think it's a good clue worth digging into? 100% yes.

And do I accept that a sort of certainty is incredibly energising for scientists? Yep. Science's great leaps seem to be driven by maniacs with a bee in their bonnet who turn out, by chance, to be right. I really want them to dig into tissues and subcellular organelles and look for latent viruses, and if the only way they do that is if they're sure they'll find it, fine!

These guys who are confident can win funding, and so long as the community can look at their work, ex-post, and assess it critically / replicate it, I think this is a good and normal part of science.

 

At times in science we see bright but over confident individuals produce a theory that is plausible on the basis of some evidence, that changes the direction of research, then other have to put their life into demonstrating the first person was wrong or at best oversimplifying.

It is one thing to do this in the physical sciences but potentially dangerous in medicine. People with ME have particularly suffered from individuals who are bright but totally unable to stand back and objectively evaluate their own work, this becomes dogma or medicine by belief.

 

Except that these people are banging on about tired old ideas that all of us have looked at and seen the shortcomings of. I don't see any new ideas in any of these twitter threads - I see sheep wandering off to nowhere in particular and taking large numbers of dollars with them.

Science actually moves forward by guy's with a bee in their bonnet that is different from the sheep and is based on clear thinking, not luck, by and large.

 

So you think there's sufficient empirical evidence to disprove the concept of viral latency / viral reservoirs in tissue? What about John Chia's work?

 

You didn't address me, but since I stated I was "worried" let me clarify why.

I don't think so and I also think more work on this front is very much warranted. However, is anybody really "digging into it" as you state? I only see people with a shovel in their hand pointing at how many people are also holding shovels, stating the hole has already been dug.

As you say "What about John Chia's work?". Why is no one doing a quick replication study, if that work bears relevance?

I have no problem with a field being convinced of something even when the evidence isn't there yet. I only see a problem when that leads to a dogmatic belief that doesn't improve the research that field is doing.

I still have hope that, that changes and it might be far to premature to make any assessments yet, but I do hope that the next studies of viral persistence that I read don't all have the same very basic shortcomings as they did in the past 4 years (lack of controls, lack of controlling for reinfection, lack of quantifying symptomology, lack of quantifiying data according to LC duration and last known Covid infection etc). I don't want to see more research that ends up invalidating itself due to poor methodology.

This doesn't necessarily apply to Putrino as he hasn't published too much research on viral persistence. So there's hope that when he does, his research is of higher quality than what we have seen thus far being produced by other teams.

 

I know today is a frightening day for many with #LongCOVID, #MECFS, chronic #lyme and other infection-associated chronic conditions. Today, all I can offer is a small piece of advice and a small piece of reassurance. Advice: please take care of yourselves and practice some
https://twitter.com/user/status/1854172895427076112

 

work my team has done and the discoveries we have made over the last four years. We did it without a cent of NIH funding. Our 6+ clinical trials we will complete over the next 3+ years will be completed without a cent of NIH funding. We won’t quit on you and there are some
https://twitter.com/user/status/1854172900300886437

 

absolute heroes out there putting smart money behind IACC research without the involvement of the NIH and they are the entities, not the NIH, that have created the most impact in the field to date. So that’s the message: look after yourself today, because we need you.
https://twitter.com/user/status/1854172902385766640