USA: Mount Sinai PACS clinic and Dr David 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

 

Copied post
12/19/24, TEDx Talks: 'Long Covid’s Invisible Toll on Public Health with David Putrino'

'In this eye-opening TEDx Santa Barbara Salon talk, Dr. David Putrino, a renowned expert...explores the pervasive and underestimated crisis of long COVID'

 

STUDY NOTES

101: Eligibility

- if reading the You-Tube transcript correctly - padded out with study obs:

The eligible definition of Long Covid was updated by some or all stakeholders. This new, breathtaking, “broad” cohort-delineation may be problematical and it may prevail. It was staked out as “inclusive” so that all in need can or may access those resources crucial for any kind of care -diagnosis, service etc - if the need is eligible

Seems the neural stupefaction could be excluded unless there are other signs of LC - always did lose 2 or 3 IQ points per infection - so K. I. S. S, its just a quotient. Long Covid had such variegating definitions that amulgamated stakeholders had to draw the line of eligibility – simply re-defining it as:

- A chronic disease state (yes, verbatim, diseased), persistent for the foreseeable (as yet without prognostic indication)
- Any decline in health since their Covid infection (but see exclusion)
- Sorry, make that their confirmed or probable case of acute Covid
- Include any organ damage from acute stage oi oi oi that’s not due to LC so its got different epi-generation so….. then … ...
- Exclude neural damage acquired in acute stage (unless with a Long Covid on top) ???

If confirmed or probable…. If it was acute without symptoms then acute was just the term for pre-chronic. Or is it only acute if symptomatic? Must symptoms be confirmed or even recorded as reported, and who got tested these days. We were not wimps, we were not snowflakes, we were tough cookies (see 104)

These stakeholders provided their experts under auspice of some National Academies (of Science, Engineering and Medicine), so I guess its not official USA Govt. Policy, or maybe their Colleges (not being Royal, yet) are also Trade Associations, too. Its legalistic because holding a stake often means no-one around can or will provide for the more costly impoverished cripples, unless some stakeholder can be legally required to, even by mission

The costs of life’s essential commodities are or are not met, there being always enough to go round: air, space, land water, shelter, fuel, food, water, kit, facilities, education and training, health and community care, transport, comms, euthanasia and / or nursing, even d.i.y nursing costs extra

This update also allows for some (but not all) of the reasonable doubt in such very civil cases
- Probability put under burden of proof in Civil Law, not as like as not but more likely than not
- - hearsay allowed

Confirmation is put under burden of proof in Criminal Law long gone beyond reasonable doubt
- - hearsay not allowed
- - - Um there might even be precedent set by reckless or deliberate cognisant transmission (e.g. H.I.V, e.g. Hepatitis C transfusion)

Spoiler: How To Measure Like The Brit

 

- Transcriber: Matheus Miranda

so is it not always automated then? ​

- Reviewer: Massa Krayem

even better ... must be a professional outfit​

My study notes - if reading their You-Tube Transcript correctly - padded out with study obs:

Seems the neural stupefaction could be excluded unless there are other signs of LC

- always lose 2 - 3 IQ points per infection, so K. I. S. S, its just a quotient
- see study note 101 below, sorry, above

 

Podcast Long Covid - The Answers
Episode 27: Long COVID Research & Potential Treatments Part 1 ft Professor David Putrino

From presentation:

Dr. David Putrino highlights the complexity of Long COVID, emphasizing hormonal and neurological impacts. Research shows hormonal disruptions, including low cortisol, are common in some patients, influencing symptoms like fatigue. Gender-specific patterns reveal women often have low testosterone, while men show reduced estradiol, correlating with differing symptoms. Neurologically, Long COVID causes neuroinflammation and vagus nerve dysfunction, contributing to issues like cognitive impairment and POTS. Emerging treatments include medications, innovative devices like vagus nerve stimulators and magnetic resonance therapy, and procedures such as stellate ganglion blocks. These interventions, supported by ongoing research, offer hope for tailored therapies to address Long COVID’s diverse effects.


https://longcovidtheanswers.com/e27-long-covid-research-treatments-david-putrino/

 

Some quotes from Putrino's talk above:

DP: 'The next generation of research studies that we need to understand is when the virus persists & when pieces of the virus persist, so viral antigens..what damage is it doing?'

DP: 'We should also be working in parallel to deploy and test interventions that may have a role in eradicating the virus from the body. So, to that end there are many broad-spectrum antiviral medications that are worthwhile in trialing..'

DP: "We are hoping that low-dose rapamycin (which at a low dose is a very safe drug with very few adverse events) can be helpful in a subset of people with Long COVID who may be experiencing this immune dysregulation flavor that includes T-cell exhaustion..."

"We're currently running a first in human clinical trial with a company called Humanity Neurotech that uses low field magnetic resonance therapy to reduce neuroinflammation. Their animal model data has been very compelling, showing that it can reduce the level of neuroinflammation being experienced in animals. Our first clinical trial in Long COVID is currently underway, looking at the result of the ability of this head-worn device."

 

At least they stopped discussing the biomarker breakthrough of cortisol. Oh wait, they haven't...

 

Spitting into the wind…