USA: Mount Sinai PACS clinic and Dr David Putrino

[SNT Gatchaman]

On a bit of a Twitter rant today —

The folks out there pushing Graded Exercise Therapy (GET) and Cognitive Behavioral Therapy (CBT) for infection-associated disease states like #LongCOVID, #MECFS and chronic #Lyme produce bad science and peddle harmful/dangerous rhetoric are truly deplorable, but what's more, when you actually dig into their logic and rationale (outside of running expensive courses, siphoning gvt funding for pointless research and patting one another on the backs) for pushing GET and CBT, I think the most disappointing thing is just how simple their thinking is.

Make no mistake, these are academics and clinicians who are IN LOVE with their own intelligence, yet when you push on the principles behind their research and their clinical processes, it's all so...underwhelming. I mean, imagine taking hundreds of millions of dollars of gvt funding to study these conditions only to conclude: "you say you're sick, but a bunch of basic, mainstream tests say you're not, so instead I'm going to label you as mentally ill and deconditioned and force you to exercise and tell you to think more positively". That's it. That's the culmination of 50 years of research for some of these "experts".

Obviously people are going to think that I'm being reductionist here and not respectful of decades of nuanced research on the topic only I'm not: they've been banging the same drum and faulty science for multiple generations and enough is enough. Here's the message: We're learning more every single day about the pathobiology of ORGANIC post-acute infection syndromes such as #LongCOVID, #MECFS and chronic #lyme. Disease states that affect every single organ in the body.

Every day we are seeing publications emerge showing hard evidence of physiological damage that cannot be explained away with your pseudoscientific framing of a 'functional' illness. What do we get in response? Opinion pieces and junk science published because you have mates in editorial positions at vanity journals after decades of controlling funding lines. Well congrats on that, but the door on your pseudoscience is closing, and let me tell you one thing that should chill you to the bone. This community of patients that you have psychologized and minimized for so long? They are passionate. They are fastidious. They are determined. They are WAY smarter than you, and... they keep receipts.

(I've redacted the last line which is just a wee bit OTT - perhaps he just rewatched Gladiator !)

 

[Hutan]

oh my goodness. That is telling them. Thanks for the laugh @SNT Gatchaman, and thanks to David Putrino for the passion and for caring.

Nice to see the number of likes on the tweets. We aren't alone in thinking these thoughts.

 

[Trish]

It's so heartening when clinicians tell it like it is. I just wish they had more clout with the NIH.

 

[jonathan_h]

Am I alone in finding Putrino’s Twitter threads a bit hollow and performative feeling? They contain little insight beyond “Them Bad. You Good.”, and given his professional incentive to win the support of our community, which his threads are clearly effective at, I feel a little skeptical.

 

[Trish]

Am I alone in finding Putrino’s Twitter threads a bit hollow and performative feeling? They contain little insight beyond “Them Bad. You Good.”, and given his professional incentive to win the support of our community, which his threads are clearly effective at, I feel a little skeptical.

It's Twitter, it's the forum for shouting about injustices. I'm glad he and Todd Davenport post threads like this. It's so heartening to have clinician researchers doing some of the shouting for us. If this was all they did, I'd be concerned, but its not.

 

[jonathan_h]

It's Twitter, it's the forum for shouting about injustices. I'm glad he and Todd Davenport post threads like this. It's so heartening to have clinician researchers doing some of the shouting for us. If this was all they did, I'd be concerned, but its not.

That makes sense. And I can relate—I found Putrino’s thread about visiting a very severe pwME in their home very affirming and moving.

My wariness is informed by how potent validation from medical professionals seems in our community. I feel like it leads many to assume the person giving it shares our beliefs and will act only ever in our best interests. We’ve already seen some friction in that regard with Putrino and some of his views on long covid and ME. Dr. Montoya is another example to me of someone who, by frequently validating his patients and pwME generally, gained a reputation among many as a saint and brilliant researcher, and he doesn’t seem to be either.

 

[EzzieD]

It's Twitter, it's the forum for shouting about injustices. I'm glad he and Todd Davenport post threads like this. It's so heartening to have clinician researchers doing some of the shouting for us. If this was all they did, I'd be concerned, but its not.

I love David Putrino. Am so pleased that he is not afraid to tell it like it is, forcefully, with no holds barred. We need more like him! Especially in the UK, where there's an unfortunate shortage of folks willing to put their heads above the parapet.

 

[Jaybee00]

Am I alone in finding Putrino’s Twitter threads a bit hollow and performative feeling? They contain little insight beyond “Them Bad. You Good.”, and given his professional incentive to win the support of our community, which his threads are clearly effective at, I feel a little skeptical.

Not alone—agree mostly. I do like it when he does these types of threads.

What I don’t like is that it sort of gets conflated with his research efforts, which I don’t think are (or will be) particularly impactful. He seems to buy into a lot of the “latest thing” stuff. His background is in rehabilitative medicine which may not be the best background for a field maybe better suited for a person with a background in immunology or metabolomics, etc.

 

[Trish]

I think people with a rehab background who understand that rehab that involves increasing activity is not the answer for ME/CFS can do useful research on the effects of activity on our physiology, etc. We need people from multiple backgrounds to look from lots of different angles.

 

[Hutan]

I think people with a rehab background who understand that rehab that involves increasing activity is not the answer for ME/CFS can do useful research on the effects of activity on our physiology, etc. We need people from multiple backgrounds to look from lots of different angles.

Yes, and well-informed rehab people, including Physios for ME, are likely to be particularly successful at getting their colleagues up to date.

For sure, just because someone is on our side, it doesn't mean we have to agree with everything they say or do. Those who missed this blog might like to check it out:
Opinion: Treading Fine Lines by Harriet Carroll [on ME/CFS/LongCovid patient/researcher relationships]

 

[Kalliope]

Article from German Puls24
Link to original article

Auto translated:
Expert: Dealing with ME/CFS among "biggest medical scandals"

Quotes:
Long Covid specialist and neuroscientist David Putrino is calling for more awareness of post-acute infection syndromes (PAIS) such as ME/CFS. These illnesses, which have increased sharply due to Corona, should under no circumstances be misinterpreted as “mental,” said the professor of rehabilitation at the Icahn School of Medicine (Mount Sinai/New York) in an APA interview. He sees the treatment of ME/CFS sufferers as one of the “biggest scandals of the last century in medicine”.

...

"Everyone wants to get back to normal. The problem is we don't have the magic wands to make that happen." It is politically easy to simply act as if prevention does not work. But one must understand - "and we have this understanding from research" - that this approach "will lead to catastrophic consequences in ten or 15 years," warned Putrino, with a view to the long-term damage of repeated infections. "Or we could actually roll up our sleeves and try to tackle the problems head on. And that's what we need from politicians now."

Summary

• Neuroscientist David Putrino warns of the 'biggest medical scandal' caused by misinterpreting ME/CFS and Long-Covid as mental disorders.
• No study proves the effectiveness of psychological management and exercise therapy for ME/CFS and Long-Covid, says Putrino.
• Measurable physical changes in those affected refute the theory of psychosomatic causes, explains the neuroscientist.
• Putrino calls for greater patient participation in research to avoid misunderstandings such as the stress-recovery disorder PEM.
• According to Putrino, preventive measures and education are crucial to combat the 'epidemic' of long-Covid.

ETA: Added an extra quote

 

[dave30th]

His background is in rehabilitative medicine

Not only. He's also a neuroscientist.

 

[dave30th]

My wariness is informed by how potent validation from medical professionals seems in our community

I think he's been on a learnng curve since the start of the pandemic. He knew nothing or very little about these conditions at the start. It's true he can be a bit over-the-top sometimes in his self-expression and threads, but he's the same when I've met him in person. He is passionate in his belief that the BPS type research in this field is garbage and needs to be called out--by him and by others in a position to do so. That's why he's been willing to sign the letters I've sent him. I can't judge whether everything he says medically is on target--but I really don't doubt his sincerity in his disgust at much of what he's seen about how patients have been mistreated and maligned.

 

[rvallee]

I think he's been on a learnng curve since the start of the pandemic. He knew nothing or very little about these conditions at the start. It's true he can be a bit over-the-top sometimes in his self-expression and threads, but he's the same when I've met him in person. He is passionate in his belief that the BPS type research in this field is garbage and needs to be called out--by him and by others in a position to do so. That's why he's been willing to sign the letters I've sent him. I can't judge whether everything he says medically is on target--but I really don't doubt his sincerity in his disgust at much of what he's seen about how patients have been mistreated and maligned.

One thing I'll say about this disaster: if you're not outraged, you're not getting it. Although people have different of expressing outrage, this is one instance where expressing it is definitely warranted. If anything it should be screamed louder, but in our situation it only makes things worse if it goes above some threshold, so everything in moderation, especially moderation.

 

[Sean]

One thing I'll say about this disaster: if you're not outraged, you're not getting it.

And terrified. This stuff should scare the living bejeebus out of people, and I think it does. Which is why they keep turning away from dealing with it, and desperately pretending, hoping, that the psychs are correct, that there is no serious physiological pathology. Because the alternative is just too horrendous to face up to.

We are up against just about every damn prejudice and bigotry there is.

 

[Jaybee00]

Another long (and in my opinion unfortunate) thread about houses on fire and viral persistence.

https://twitter.com/user/status/1780558495512662167

 

[Amw66]

So excited for this new podcast series! Everything that students who are training to become clinicians need to know about post-acute infection syndromes such as #LongCOVID, #MECFS, and chronic #Lyme broken down by Dr Raven! One episode every week coming at you!

 

[SNT Gatchaman]

I love David Putrino. Am so pleased that he is not afraid to tell it like it is, forcefully, with no holds barred. We need more like him! Especially in the UK, where there's an unfortunate shortage of folks willing to put their heads above the parapet.

This stuff should scare the living bejeebus out of people, and I think it does. Which is why they keep turning away from dealing with it, and desperately pretending, hoping, that the psychs are correct, that there is no serious physiological pathology. Because the alternative is just too horrendous to face up to.

Discussing their unpublished results in purified IgG transfer from acute Covid and long Covid patients to mice —

"So we're very, very excited about this finding because of course it shows us once and for all ... <chuckling> you know if there's anyone that wants to continue to deny that long Covid is an organic illness. We can say 'well hey we've got an injection for you if you really believe it so hard. You know let's really put this theory to the test.' But, I'm just joking there we're not going to do anything of the sort"

 

[Binkie4]

Fantastic! This research team means business.

I am so disappointed that I visited New York ( to see my son) last November, contacted Mount Sinai prior to it offering my ME blood, had a very welcoming response but felt so ill when I got there that I couldn't arrange to donate. 98th Street was a long way from where I was staying and I couldn't leave the apartment. I would have liked to participate as a pre 2020 ME patient.

I had travelled by boat on a transatlantic crossing but We stayed inside until the taxi back to the airport.
I think it's great that Uber are donating some rides for researchers to go out and collect samples.

 

[Binkie4]

Yesterday I had a letter from the Sinai research team asking if I was still interested in providing a sample. They had obviously kept my details from last year.
We have no plans to visit NYC this year so I had to reply no, adding that I found David's talks encouraging and hopeful. Had a very pleasant email back thanking me for my gratitude and kindness.
Good feel to this work.