USA: Mount Sinai PACS clinic and Dr David Putrino

bobbler said:
I can't even be sure by that whether he means people with E are apparently 'overbreathing/pushing out too much CO2 (apparently it causes alkaline blood)' or the opposite?
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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.
 
mango said:
According to this tweet/thread, the goal is to challenge the ANS in order to change its behaviour.
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I particularly liked this:

Putrino Lab on Twitter said:
We often hear the phrase "exercise is medicine". If true, then we must understand that all medicine must be titrated and dosed appropriately in order to do good, not harm. We must understand that some individuals will have contraindications to the medicine regardless of how innocuous or harmless you may think what you are prescribing is. Don't let a lack of understanding of basic physiology lead to harm for the people with #LongCovid, #MECFS and other chronic conditions that are under your care (end)
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hibiscuswahine said:
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.
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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).
 
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Sasha said:
I don't know. In practice, this is the kind of thing that I might be tempted to try, because I could have died of old age before we know more about the physiology.
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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.
 
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.
 
Jonathan Edwards said:
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.
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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.
 
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.
 
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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?
 


Some time ago, a person with severe #MECFS requested that I visit with them. It has been a while since I was there and I’m still working through everything I heard and saw that day. This person had been unwell for many years and their (1/)

#MECFS was about as severe as I could imagine being possible. The visit started with a friendly coffee and chat with this person’s caregivers. There were so many emotions and feelings in that conversation: grief, resignation, gratitude, fear and concern for the future and (2/)

exhaustion to name just a few. After some time, one of the caregivers went to see if my host was still comfortable meeting with me. I was told I could enter their room. The room was small, very dark (because light was such a trigger) and well-organized so that this person (3/)

could access things in their immediate environment that were necessary for hygiene, dignity and sustenance with minimal exertion. This individual was no longer able to verbally communicate but could manage a measure of basic communication with small hand gestures to interact (4/)

with me. We had precious little time together because their energy was so limited. I thanked them for taking the time to meet me, I told them that I was working to understand their illness and I asked what I could do to help. The response, though expected, gutted me: nothing (5/)

This visit wasn’t about me helping, it was about me bearing witness and understanding the worst possible severity of #MECFS. In almost 20 years of clinical practice, practice that has not been short of highly confronting clinical situations, I can honestly say that was the (6/)

most prolonged and intense instance of human suffering that I had personally witnessed, and it was the most helpless I have ever felt as a clinician. My time was up. I thanked my host profusely and left their room. As their caregiver shut the door they said “they haven’t (7/)

moved from that spot in 7 years”. As I walked away from the room, these kind people offered me food, drink and asked if I wanted to stay. I wish I could have accepted but my mind was spinning, my emotions were in complete turmoil and I numbly told them that I had to leave. (8/)

I really hesitated to share this experience, but ultimately I decided to share for a few reasons:
1) We so rarely hear about the day-to-day reality of those who live on the extremely severe end of the #MECFS spectrum, it is crucial that we understand what so many are going (9/)

through behind closed doors.
2) I wanted to share how overwhelmed I was by the dignity, grace and selflessness on display by this individual in the face of unimaginable suffering. They gave me some of their precious energy so that I could meet them. They knew I would not (10/)

have any capability to help them, they knew that spending time with me would cost them. They chose to do it anyway so I could learn. That level of selflessness and bravery for a cause is so rare and needs to be acknowledged.
3) If there are people with #MECFS reading this (11/)

who are in a similar situation, I wanted you to know what I’ve seen. I’ve seen first-hand how severe this illness can get. This is an experience that will stay with me for life, and until we have treatment options for people living with this severity of #MECFS, our work (12/)

is not done.
I apologize for such a heavy topic on a Saturday and I hope this thread was not too confronting for #pwME or other complex chronic illnesses who read along. I’ll leave it here, but I’d just like to share a heartfelt thanks to all who are selflessly sharing (13/)

their experiences with me and my team. We are learning so much from this extraordinary community and we are endlessly appreciative of the kindness, selflessness and partnership that you continue to entrust us with. Thank you. (End)
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I'll post this here, not sure where else to post

[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/]
 
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[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/]
 
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[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/]
 
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SNT Gatchaman said:
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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.
 
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