USA: Mount Sinai PACS clinic and Dr Putrino

Yeah. Was just about to post this when I saw the comment above.


“Soon, we will be formally announcing the launch of our new clinic: a center dedicated to recovery from complex chronic illnesses.”

Would prefer the words “treatment of” instead of “recovery from”complex illness.

You can definitely treat some of the symptoms of these diseases but can’t guarantee or shouldn’t promise recovery at this point.

 

I'm not personally bothered, because I am confident of Putrino's intent and understanding. See first post in this thread this post. Also, it's Twitter/X so there are word limits!

Dedicated.
adj.
1. devoted to a task or purpose.
2. exclusively allocated to or intended for a particular purpose.

I'd read that as "In this clinic we will treat..." by way of "a center dedicated to [the aim of] recovery from chronic illness."

 

Posts moved from the Long covid in the media thread.

Just looked at this vid that seems troublesome. Dr. Tosto-Mancuso goes out of her way to explain her program is not GET and does account for PEM, but it does sound like they're trying to "activate" people to do more, which anyone who's been around here long enough knows is trouble. I've responded with some questions, curious to see the response.

https://www.youtube.com/watch?v=vX6Di21Z-4M

How Does Autonomic Conditioning Work? | With Dr Jenna Tosto-Mancuso

 

http://www.dysautonomiainternational.org/page.php?ID=43

I don't know if this is the exact treatment but it seems it would be similar to this. I've gotta be honest, I don't see the point in this at all. If you're severe enough to be bedbound there's other stuff you could spend your energy on than curling up your toes or squeezing a pillow between your legs. If you're well enough to move around I still don't see what this does.

She also mentions a sort of fatigue/disability scale that measures a patients experience, but nothing about objective measurements. I don't know enough of dysautonomia to make any definite assertions but are there no objective ways to measure if this even does anything?

 

https://assets.researchsquare.com/f...-2789-41d2-8ce5-68097594b3a9.pdf?c=1631881293

Paper on the treatment which raises a ton of red flags for me, but I'm honestly not clear of mind enough to take them all on. Main one is that it's open-label with subjective endpoints. There's also some unclear language about people not having completed the treatment. The thing that's unclear to me is if those patients enrolled in the first place and didn't finish, or if they never enrolled at all. If it's the former it's a rather damning indictment.

 

Thank you.

 

https://twitter.com/user/status/1689619002329341952

 

https://twitter.com/user/status/1689619020486422528

 

https://twitter.com/user/status/1689619022487150593

 

“For our STAFF.”

He is capitalizing staff because he is implying that a psychologist could never be trusted to counsel LC patients on their own (otherwise they would automatically gaslight)?

Is this considered patronizing to psychologists?

 

I hear that so much out of MDs, how they find it frustrating to deal with us because there's nothing they can do to help.

Which is really puzzling, since there must be thousands of conditions for which there's nothing they can do to help. Most of those aren't as bad as us, in fact most are benign, so it's really weird and sounds more like a cheap excuse most of the time.

Modern medicine is still very limited in what it can do. But there is so much demand out there that it mostly fulfills that need to provide real help. Except they don't really see the long tail of suffering that follows many after their life has been saved, only what goes on at their workplace where they do things that save people. Some of the stuff that I've read about what they believe happens to patients after that is seriously disturbingly wrong.

Frankly, they need a lot more psychological help because this whole attitude baffles me, especially about something that is fundamental to the job. It wouldn't be so bad if this weren't somehow mixed with this twisted attitude of "can't help them? well there can't be anything wrong with them, then" that is so common. In fact the entire concept of psychosomatic medicine comes out of this.

Seriously this profession has major issues to deal with. I hope they address this soon enough, because it's become one of the biggest obstacles to progress, where they can't seem to find the motivation to even try because they assume they'll fail. Which is ironic, because it's literally what they wrongly accuse us of.

 

Yeah I’m all for everyone getting loads of psychological help at work. Clearly most of them aren’t managing without it.

 

The trouble is, if the outcome measure for the success of this help was not behaving disrespectfully, callously or sadistically toward your patients, the helpers would have their work cut out for them and may need some help with dealing with the frustration of dealing with ‘treatment resistant disorders’ themselves.

 

https://twitter.com/user/status/1704504245196558783



https://www.mountsinai.org/about/ne...on-for-the-clinical-care-of-long-lyme-disease

 

https://twitter.com/user/status/1704504248484893156


infection-associated complex chronic illnesses such as #LongCOVID, #Lyme and #MECFS. As such, we will take insurance and work to help patients to access expensive off-label meds through ethical formularies such as
@mcuban's
@costplusdrugs
where expensive meds can be found at a fraction of the cost so long as you have a prescription. Because our clinical strategies can be easily replicated at other centers (we're not looking to become a "destination center"), we will be putting A LOT of effort into FREE medical education so that others can do what we do. I know that a lot of you are suffering and 2024 seems far away. We are fighting to move as fast as we can, because we can see the need and we are hopeful that this center (and others that grow from it) will be game-changing, but we want to make sure we get it RIGHT.

I'm so grateful to
@cohengive
and so many others who have made this opportunity possible. Our team is both humbled and honored to serve this community that has too long been without the care they deserve. I'll stop here because we've got work to do. Watch this space

 

I wish it didn’t sound so quacky.