USA: Mount Sinai PACS clinic and Dr David Putrino

Kalliope

Kalliope

Senior Member (Voting Rights)
Moved post
New video from Medinger. This time in conversation with dr. David Putrino, a British physiotherapist who is the director of rehabilitation innovation at Mt. Sinai in New York and now works with long haulers.

10 minutes in he says he was discussing the symptoms of his Long Covid patients with a colleague with background from the Navy. The colleague said the symptoms reminded him of "hypocapnia" that they've seen in airforce pilots who "have been pulling a lot of Gs" and he wondered if the patients' Co2 levels were low, which they turned out to be. He says further that patients improved a bit with a breathing programme and that this helped them get ready for rehabilitation.
More about the breathing programme here https://stasisperformance.com

dr. Putrino then goes on to talk about what sounds like PEM in his patients and that they are slowly increasing exercise tolerance with "autonomic condition therapy", but within the energy envelope and patients can assess themselves where their limits are. He believes that those who have improved, have improved due to their program, but also mentioned a patient who improved, then had a severe flare after 5 months.

Towards the end he says he'd like to see more research into traditional Chinese medicine in Long Covid.

No mention of ME in this video.

 
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Moved post
That was a really nice podcast. Very interesting to hear about dr. Putrino's work.

Here's a transcription of what is said between 26-33 minutes into the podcast (hope I got most of it right):

Amy Proal
Overall, I can understand how when a clinician first sees a patient like this. On standard blood works, there’s not much that seems wrong. Overall it just seems like - hey look, you gotta jump back in, you gotta get back up. You don’t feel well..

That they would just recommend exercise. I can understand why that would be the case. But it isn’t really.

You mentioned Post Exertional Malaise which is also a common symptom of another diagnosis; Myalgic Encephalomyelitis - ME/CFS, and I’ve worked to study for several years now and which patients; their exercise actually provokes symptoms. So they have to be very careful in the way that they exert themselves.

Have you seen that and is that part of how you pace? Can you go into that a little bit more?

David Putrino
Yes, absolutely. We see a lot of symptom provocation and exacerbation in response to exercise. So much so that in our training, because we’ve trained around 700 clinicians now around the country on just the fundamentals on autonomic rehabilitation.

We point out that even… because everyone wants functional testing. They want to say how do I know when a patient is getting better.

And even something as simple as the six minute walk test, which is a self-paced walk-down-the-hall for six minutes, and the clinician just tracks over the six minutes period how long the patient walked. We have to tell clinicians that that is too high level of exertion for most of the patients that we see.

And we’ll often get the cowboy, you know:
- No, no, I did it with all my patients and they were fine

and I was like:
- Yeah, they completed the test, right?

- Yeah, no problems, no problems completing the test

and I was like:
- Did you check in on them two days later?

- No, why would I do that?

- Because I’m expecting that you have a fundamental understanding of the literature for the conditions that you’re treating, and you understand that when we talk about post exertional symptoms, that’s different from exercise intolerance, which is different from fatigue. And so with post exertional symptoms you need to be tracking your patients for up to two days, some patients will even say three days, because that’s when things arise.

So this idea of you're deconditioned, we just need to push you through with exercise is a disaster.

It’s inappropriate because these patients don’t look like patients in need of pulmonary rehabilitation or cardiac rehabilitation.
Their heart is fine, it is within normal limits. Their lungs are fine, within normal limits. They don’t have pulmonary function test that looks out of order.
So why would you refer them on for what looks like pulmonary rehabilitation?

They are reporting symptoms that are consistent with dysautonomia. There’s 20+ years of literature saying that if you work patients too hard with dysautonomia, they will worsen. If you exercise patients too hard in ME/CFS, they will worsen. Of course, ME/CFS has had a lot more controversy than dysautonomia around the point of exercise unfortunately, because bad science and the dissemination of bad science.

But the reality is hopefully there are enough people, there are enough patients speaking up now, that these doctors will listen when they’re told exercise as though these patients are deconditioned is not the answer.

I was incredibly discouraged to see the NIH funding high-intensity interval training for long covid patients. Now granted it was for a subset of long covid patients that had PICS, Post ICU syndrome, but I’ve seen some of these patients and if anything you need to be even more careful with this patient population.

So I think that we have a lot of work to do in terms of changing the culture from the top level. I think that all of these patient led groups have been doing a phenomenal job of being heard. I think it’s time for them to sit in on NIH study sections and have a voice, because clearly when I see HIT-training being recommended as a clinical trial for long covid patients, I see the potential for harm and I know for a fact that that grant would not have been funded if there were a patient representative sitting in the room saying: hi guys, that’s gonna kill some people. Don’t do that.

That’s a meandering thought process for fatigue...

Amy Proal
No, that’s an extremely valid view.

Because with the ME/CFS as we've explained already I work on, all of us researchers that are already working on that diagnosis know that it confuses the community.

It takes away from valuable time that can be spent on research and discussions on what actually matters and this idea that we’re just gonna have patients exercise without really reading, like you said, this existing literature on this.

There have been plenty.. in ME/CFS there’s a trial called the PACE trial that concluded that patients can benefit from graded exercise, but there are many faults with that study. I have signed many letters that have pointed out the faults with that study. So have many other scientists.
We’ve been doing this for years. And part of that is that we’re not listening to patients enough, like you said.

Patient reported feedback should be a high level of evidence. Right now in evidence based medicine, it’s low on this evidence pyramid, which I’ve always disliked. I think patient reported feedback should really be one of the primary sources for hypothesis and the research in clinical work that we conduct.

And the fact that your group is doing that is an exemplary example of how this can work and I agree that institutions like the NIH and whoever that are doing this and probably coming up with the more conservative and standard approach in the beginning, I hope they will stop and be listening to feedback from groups like yours over time to adjust the programmes and things that they are funding because I agree, we should have learned by now that probably just making someone exercise alone without thinking through the way that you approach, it does not work.

ETA: weird, I tried to quote the post with link to the podcast, but it didn't show. Anyway, I was referring to the post just above this one and here's the podcast:
 
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That was an interesting podcast. Dr Putrino seems like a clinician committed to getting good outcomes for his patients, and humble enough to admit that everyone is floundering a bit, just trying stuff, when it comes to Long Covid. He and his team are approaching Long Covid treatment from a perspective of dysautonomia. Interestingly, they seem to believe that exercise eventually is part of what desensitises the system, although it is offered with an awareness of PEM and a commitment to avoiding 'flares'. Dr Putrino was simultaneously holding open the possibilities of autoimmune disease, and/or damaged vagal nerves and/or residual viral infection.

I do wonder if all of the treatments they provide, including breath work and psychological counselling to help people keep calm so as to not trigger a dysautonomia flare, actually just help the person to pass the time for long enough to either recover or not, probably just as they would have without the treatment. The clinic does offer pacing advice - so perhaps that helps a bit.

Dr Putrino was clear that they aren't fixing everybody.
 
Post-acute COVID-19 syndrome negatively impacts physical function, cognitive function, health-related quality of life and participation
This study is co-authored by Putrino, and is based on surveys of patients in the PACS Clinic.


Autonomic conditioning therapy reduces fatigue and improves global impression of change in individuals with post-acute COVID-19 syndrome, 2021
We developed a novel physical therapy program known as Autonomic Conditioning Therapy (ACT) for PACS, and report on the preliminary patient-reported outcome (PRO) data from individuals who completed ACT for PACS, compared with those who did not.
Click to expand...
Putrino was the lead author on this paper. Our members were underwhelmed.
 
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Kalliope said:
Moved post

That was a really nice podcast. Very interesting to hear about dr. Putrino's work.

Here's a transcription of what is said between 26-33 minutes into the podcast (hope I got most of it right):

Amy Proal
Overall, I can understand how when a clinician first sees a patient like this. On standard blood works, there’s not much that seems wrong. Overall it just seems like - hey look, you gotta jump back in, you gotta get back up. You don’t feel well..

That they would just recommend exercise. I can understand why that would be the case. But it isn’t really.

You mentioned Post Exertional Malaise which is also a common symptom of another diagnosis; Myalgic Encephalomyelitis - ME/CFS, and I’ve worked to study for several years now and which patients; their exercise actually provokes symptoms. So they have to be very careful in the way that they exert themselves.

Have you seen that and is that part of how you pace? Can you go into that a little bit more?

David Putrino
Yes, absolutely. We see a lot of symptom provocation and exacerbation in response to exercise. So much so that in our training, because we’ve trained around 700 clinicians now around the country on just the fundamentals on autonomic rehabilitation.

We point out that even… because everyone wants functional testing. They want to say how do I know when a patient is getting better.

And even something as simple as the six minute walk test, which is a self-paced walk-down-the-hall for six minutes, and the clinician just tracks over the six minutes period how long the patient walked. We have to tell clinicians that that is too high level of exertion for most of the patients that we see.

And we’ll often get the cowboy, you know:
- No, no, I did it with all my patients and they were fine

and I was like:
- Yeah, they completed the test, right?

- Yeah, no problems, no problems completing the test

and I was like:
- Did you check in on them two days later?

- No, why would I do that?

- Because I’m expecting that you have a fundamental understanding of the literature for the conditions that you’re treating, and you understand that when we talk about post exertional symptoms, that’s different from exercise intolerance, which is different from fatigue. And so with post exertional symptoms you need to be tracking your patients for up to two days, some patients will even say three days, because that’s when things arise.

So this idea of you're deconditioned, we just need to push you through with exercise is a disaster.

It’s inappropriate because these patients don’t look like patients in need of pulmonary rehabilitation or cardiac rehabilitation.
Their heart is fine, it is within normal limits. Their lungs are fine, within normal limits. They don’t have pulmonary function test that looks out of order.
So why would you refer them on for what looks like pulmonary rehabilitation?

They are reporting symptoms that are consistent with dysautonomia. There’s 20+ years of literature saying that if you work patients too hard with dysautonomia, they will worsen. If you exercise patients too hard in ME/CFS, they will worsen. Of course, ME/CFS has had a lot more controversy than dysautonomia around the point of exercise unfortunately, because bad science and the dissemination of bad science.

But the reality is hopefully there are enough people, there are enough patients speaking up now, that these doctors will listen when they’re told exercise as though these patients are deconditioned is not the answer.

I was incredibly discouraged to see the NIH funding high-intensity interval training for long covid patients. Now granted it was for a subset of long covid patients that had PICS, Post ICU syndrome, but I’ve seen some of these patients and if anything you need to be even more careful with this patient population.

So I think that we have a lot of work to do in terms of changing the culture from the top level. I think that all of these patient led groups have been doing a phenomenal job of being heard. I think it’s time for them to sit in on NIH study sections and have a voice, because clearly when I see HIT-training being recommended as a clinical trial for long covid patients, I see the potential for harm and I know for a fact that that grant would not have been funded if there were a patient representative sitting in the room saying: hi guys, that’s gonna kill some people. Don’t do that.

That’s a meandering thought process for fatigue...

Amy Proal
No, that’s an extremely valid view.

Because with the ME/CFS as we've explained already I work on, all of us researchers that are already working on that diagnosis know that it confuses the community.

It takes away from valuable time that can be spent on research and discussions on what actually matters and this idea that we’re just gonna have patients exercise without really reading, like you said, this existing literature on this.

There have been plenty.. in ME/CFS there’s a trial called the PACE trial that concluded that patients can benefit from graded exercise, but there are many faults with that study. I have signed many letters that have pointed out the faults with that study. So have many other scientists.
We’ve been doing this for years. And part of that is that we’re not listening to patients enough, like you said.

Patient reported feedback should be a high level of evidence. Right now in evidence based medicine, it’s low on this evidence pyramid, which I’ve always disliked. I think patient reported feedback should really be one of the primary sources for hypothesis and the research in clinical work that we conduct.

And the fact that your group is doing that is an exemplary example of how this can work and I agree that institutions like the NIH and whoever that are doing this and probably coming up with the more conservative and standard approach in the beginning, I hope they will stop and be listening to feedback from groups like yours over time to adjust the programmes and things that they are funding because I agree, we should have learned by now that probably just making someone exercise alone without thinking through the way that you approach, it does not work.

ETA: weird, I tried to quote the post with link to the podcast, but it didn't show. Anyway, I was referring to the post just above this one and here's the podcast:
Click to expand...



LOVE this.

As summary of succinctly what someone who has a brain looking and wondering what on earth has been going on for the last number of years the following line seems to encapsulate exactly what it is (and of course could be extrapolated to the other misguided ideas of how other symptoms could be fixed using generic presumptions):

"I see the potential for harm and I know for a fact that that grant would not have been funded if there were a patient representative sitting in the room saying: hi guys, that’s gonna kill some people. Don’t do that."
 
Hutan said:
Post-acute COVID-19 syndrome negatively impacts physical function, cognitive function, health-related quality of life and participation
This study is co-authored by Putrino, and is based on surveys of patients in the PACS Clinic.


Autonomic conditioning therapy reduces fatigue and improves global impression of change in individuals with post-acute COVID-19 syndrome, 2021

Putrino was the lead author on this paper. Our members were underwhelmed.
Click to expand...


Well I take back my previous comment in a way. How can someone who ignored a 60% drop-out and didn't investigated why most people didn't finish the programme then say the phrase about patient input so you don't kill people with a straight face? One's talking the right talk and then the paper re the drop-outs isn't walking the talk at all
 
Post copied from the Long covid in the media and social media thread

Anyone not yet blocked by Sharpe, Wessely and the rest want to clue them in on what actually matters in ME? Tag them in on this? Maybe Greenhalgh and a few more? Putrino has been at this for 2 years and understands this better than all of them combined. And didn't even start that strong, had some early assumptions that he managed to falsify. Because it is possible to learn from experience, it just takes a scientific mind free of excessive bias. Oh, and actually listening to patients for useful information. That helps a whole lot when technology isn't useful.

I am firmly in the opinion that informing people of things they don't understand is not harassment. But maybe I'm just weird like that.

 
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Kalliope said:
I'm pretty sure I've heard a description in one of the interviews he's given. I believe it was the one referred to here:
https://www.s4me.info/threads/usa-mount-sinai-pacs-clinic-and-dr-putrino.23051/#post-384939
Click to expand...


Thanks for posting, @Kalliope. I'm only partway through the transcript of that video and he's described a lot a of standard dysautonomia treatment but also something that's new to me:

Dr Putrino said:
we've been doing a lot of work with breath work coaches


um a lot of our patients have really experienced benefit from that we noticed that a lot of our patients were hypocapnic meaning that when they were sitting at rest and we used the device called capograph to look at their level of co2 carbon dioxide that they were breathing out

um it was lower than normal um it was not low to a point that i would call dangerously low


but it was certainly abnormally low um and and so you know we should have we should have an end tidal co2 level of around 35 to 45 millimeters of mercury what we were seeing in this cohort was around 25 to 30 was was the average range so you know it's it's low


and so um the breathwork team at stasis that we partnered up with they were providing breathwork protocols that um that worked to increase uh co2 tolerance and increase levels of co2


i think it's also important you know for clinicians that might be listening to this um co2 was low in the absence of an elevated respiratory rate so patients weren't breathing faster often that's the first thing you think of oh low co2 you're panting no they're their their respiratory rate was within normal limits if a little low actually but um but their co2 levels were quite low


so although we don't quite know the mechanism why we we figured okay let's let's see if breathwork treats it and in in most cases we see that it eases symptoms and that was really helpful as a prehab step because it allows patients to um first we've stabilized the symptoms they they don't you know the the goal of the first phase is let's just help you feel less blindsided when an attack of symptoms happens um you can explain you you can at least explain why this is happening to you
Click to expand...

So no RCT there or much discussion of the benefits except to say it was 'really helpful'. I don't know if I've ever had my CO2 levels measured and I've certainly never been offered breathwork.
 
Sasha said:
So no RCT there or much discussion of the benefits except to say it was 'really helpful'. I don't know if I've ever had my CO2 levels measured and I've certainly never been offered breathwork.
Click to expand...

Putrino's general approach is certainly sympathetic.
I think we need to know more about the physiology before starting treatments though. If there is a lowish CO2 that might be a useful compensatory response so not something to try to reverse.
 
Jonathan Edwards said:
Putrino's general approach is certainly sympathetic.
I think we need to know more about the physiology before starting treatments though. If there is a lowish CO2 that might be a useful compensatory response so not something to try to reverse.
Click to expand...
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.
 
From the little I have yet to find out on this online is that he works in a multidisciplinary team which incudes psychiatry, (and ACT is not the acronym I would have chosen for Autonomic Conditioning Therapy). I understand they approach amalgamating various disciplines including physiotherapy. I think he is a good communicator around current issues related to pwME/LC and interested to see how this develops.

The “breathwork” is an updated term for simple deep abdominal breathing exercises to correct any hypocapnia (from whatever cause) and from my perspective does not require a breathwork “coach”.

Box breathing may be an addition for lung rehab from covid effects to get full inflation of lungs and there is an interplay between the distress of breathlessness due to respiratory illness and often physiotherapy and psychology work together within this context with good results (From a liaison psychiatry perspective).

There are a myriad of ways of doing breathing and relaxation to lower any excess sympathetic drive that are easily accessible online etc and are free and suitable for any sociocultural group without any hyping and amplification that I see around. I used to teach deep breathing/relaxation to many of my patients in MH and later Mindfulness Based Stress Reduction techniques (we had a different approach on observing the breath once abdominal breathing established rather than focusing on any thinking, counting etc - as the most simplest coping strategy when overstimulated with internal and external information)

I suspect a lot of this is based on psychological treatments based on observing the effect of breathing on the body (Somatic Therapy) and often do require a professionally trained therapist. This is used for the treatment of trauma in the MH sphere.

I am still trying to find out if they are using vagal nerve stimulators which have no scientific trials that meet the standard of evidence that I would require to consider their usage.
 
Sasha said:
Thanks for posting, @Kalliope. I'm only partway through the transcript of that video and he's described a lot a of standard dysautonomia treatment but also something that's new to me:



So no RCT there or much discussion of the benefits except to say it was 'really helpful'. I don't know if I've ever had my CO2 levels measured and I've certainly never been offered breathwork.
Click to expand...

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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