USA: Mount Sinai PACS clinic and Dr Putrino

I think that is from the recent CPET results showing a form of hypocapnia (low blood carbon dioxide) which causes respiratory alkalosis. It appears to be a mismatch of inspiration to expiration. It is not a classic pattern of hyperventilation seen in acute anxiety where the rapid breaths and accessory muscle use causes hypocapnia. I don’t think they know why…just theories around the ANS.

 

I particularly liked this:

 

Is there enough of a description of this ANS rehab method for anyone to try to replicate it for themselves?

 

This was the first time I'd spoken with Putrino. He really just kind of emanates compassion and concern for patients--at least that was my impression. If I were sick, I felt I'd be comfortable with him looking out for me.

 

If it is that then I've been told (not by doctor but by friend of friend who works in that area) that it is something that is common in athletes and musicians - for obvious reasons. Thinking of it that way makes complete sense re: ME and those who are basically in anaerobic stage to do anything (it is like doing the final sprint in the marathon to the line just to stay standing doing a small task).

OK thanks for confirming - I was getting confused whether he was inferring the opposite the way it was written and the hypo etc

Yes, definitely should not be conflated (though now you've mentioned it I would not put it past the mind-body crew either being that foolish/inaccurate or playing on others not spotting the difference) with anxiety-related - tbf I thought they had to use a paper bag because they were hyperventilating, not pushing out too much oxygen, which looks a helluva lot different (you don't notice people who do the Co2 bit, but you do with the hyperventilators).

 

And that is my worry. People not familiar with physiology will happily follow these treatments.
The principle remains that unless you actually know what is going on you have to assume that your treatment is just as likely to make people permanently worse as permanently better.

 

Yes, but do we have any reason to think they are a good thing. As far as I can see unless you understand the reason for the hypocapnia this is as unjustified as Chinese herbal remedies.

 

Which looks just as bogus as the deconditioning theory.

 

Don't let a lack of understanding of basic physiology lead to harm for the people with #LongCovid, #MECFSand other chronic conditions that are under your care

That is exactly right yet Putrino seems keen to treat people before he has worked out the physiology.

Step one is to be critical of the received wisdom.
Step two is harder - to be critical of your own work.

 

No, afraid not, and I don’t think he does or his innovation team, nobody knows. I think there is a lot he is not saying or being very cautious how he presents it to the public.

My take is they are taking a large cohort of long covid patients into their Lab/Clinic and applying their various theories/models and methods based on, so far from what I have read/heard/watched - physiotherapy with some ?positive outcome working with dysautomnia, exercise physiologists, high performance sports physiotherapy, his neuroscience doctorate and the team involves psychologists (who have already commercialised) breathwork, probably anxiety management strategies, doing cortisol levels and this new Autonomic Conditioning Therapy and a psychiatrist.

There is an element of look at all this great work we are doing but no, we won’t be sharing it with you until we are ready, which is their prerogative.

But also this long covid group will have a variety of presentations and co-morbidities and what he calls “endo-types”, which are basically how they have assessed them to each treatment group or protocol and we don’t know who gets what, why etc. Will just have to wait and see.

 

Very much agree with this.

 

Merged thread
Trial By Error: Mt Sinai’s David Putrino on Long Covid, Post-Exertional Malaise, and Lazy Doctors–Text Version!

5 October 2022
By David Tuller, DrPH

David Putrino is a neuroscientist and physical therapist at Mt Sinai Hospital in New York. He runs a research lab and rehabilitation center that became a magnet for people grappling with what became known as long Covid–or what the US National Institutes of Health called post-acute sequelae of SARS-CoV-2 (PASC).

A native of Perth, Australia, he moved to the United States in 2009 to study computational neuroscience at Harvard Medical School and the Masachusetts Institute of Technology, and later New York University. We spoke a few months ago about how he began treating long Covid patients, the symptom of post-exertional malaise, why many doctors psychologize things they don’t understand, and related issues. I posted that video at the time.

Here’s an edited text version. In this case, “edited” means bits have been moved around, sentences tweaked, phrases rephrased, all for the sake of clarity. Luckily, Dr Putrino’s compassion and determination to do the best for his patients comes through as clearly in text as on video. He maintains an active Twitter feed, and has not been shy about calling out long Covid and ME/CFS skeptics and minimizers.

More at link.

 

It seems I missed the video.

In any case -- thank you for the text version, Dave. Much appreciated as it's much easier and less PEM-provoking for me to read than to watch videos.

I think Putrino says a lot of reasonable and likeable things. Just find it a bit strange (unless I missed it) that ME/CFS isn't explicitly mentioned in the interview?

 

Merged thread

https://twitter.com/user/status/1635615937574436864

PutrinoLab
Friends, we are once again putting out a big call for ANYONE who has had COVID and FULLY RECOVERED (no persistent symptoms) in the NEW YORK CITY area to assist us with a #LongCovid study. If this sounds like you, please contact us at prcovid@mountsinai.org

 

https://twitter.com/user/status/1654956335891374081

 

I'll post this here, not sure where else to post
https://twitter.com/user/status/1687839108142411776

[Soon, we will be formally announcing the launch of our new clinic: a center dedicated to recovery from complex chronic illnesses. In this clinic we will treat folks with conditions like #EDS, #LongCOVID, #MECFS and #LongLyme. We were incredibly intentional about the decision 1/]

 

https://twitter.com/user/status/1687839112944852993

[and researchers trying to simplify what is complex. This is a very powerful urge that we need to suppress. Oversimplifying these conditions has not worked out for anyone. We need to acknowledge and embrace the complexity, and this will help all conditions. For instance, 4/]
[#LongCOVID and #MECFS share many overlapping symptoms and diagnostic criteria. However, a fundamental and irrefutable difference between the two is that we *know* that acute SARS-CoV-2 infection was the precipitating event in LongCOVID. This matters greatly because we also 5/]

 

https://twitter.com/user/status/1687839116694544384

[proteins for folks with #LongCOVID and vaccine injury, even though this may not benefit those with pre-COVID #MECFS, EDS and #Lyme. Similarly there are folks with complex chronic illness who have #MECFS diagnoses from mold exposure or other triggering exposure events that will 7/]
[not respond to therapies like Paxlovid, but DESERVE specific research tracks. Then of course we see the similarities. So many folks with #LongLyme, #LongCOVID, #EDS and #MECFS experience recurrent and debilitating latent viral reactivation, parasitic infection, bacterial 8/]

 

Important stuff.

I wish there weren't so many in the population who choose to be incapable of doing this and by being such xyz's do the worst harm imaginable(that I think you could do to anyone long term, it is so vile and immoral, not 'a debate' or 'a small thing' but fundamental and disgusting behaviour) to the most vulnerable yet strong and worthy human beings they might have the privilege to meet (but I personally guess that is exactly the problem/cause, combined with the permission given to them to be that taboo-breaking vile by BPSM - what a hoot/one-off chance you aren't allowed to do with anyone else). I just wish others would make said people look in the mirror instead of letting them get away with deluding themselves they aren't bad people - it doesn't matter whether 'they won't change/will stay bad people', if you don't flag it they won;t even try and summon their intelligence and won't know who they are sometimes being outcast for their behaviour is the only thing that makes a society/moderates certain individuals. SO I can't applaud this enough.

 

https://twitter.com/user/status/1687839108142411776

[Soon, we will be formally announcing the launch of our new clinic: a center dedicated to recovery from complex chronic illnesses. In this clinic we will treat folks with conditions like #EDS, #LongCOVID, #MECFS and #LongLyme. We were incredibly intentional about the decision 1/]
Anyone else bothered by his use of “recovery” here?