CoRE: Long Covid, Lyme and related conditions clinic at Mt Sinai hospital

CoRE: a new clinic at Mount Sinai providing innovative care for LongCovid, Lyme+ and related conditions


https://polybio.org/polybio-mount-s...ients-with-long-covid-and-related-conditions/


Going backwards.

 

What’s going backwards?

 

https://twitter.com/user/status/1844981056434245987

 

I would like to participate in that Mount Sinai effort. I thought I reached out to them, but never got a reply.

 

Thread Reader for those not on X.
https://threadreaderapp.com/thread/1844981056434245987.html

 

At CoRE, patients will undergo specialized rehabilitation with a physical therapy team with expertise in autonomic rehabilitation to address autonomic dysfunction... After the assessment, physicians at the Center medically manage the clinical care of patients and use the latest evidence to prescribe medications that are known to be effective in the management of concurrent conditions such as latent viral reactivation and mast cell activation syndrome...
These evidence-based approaches include virtual, augmented, and mixed reality; transcranial magnetic stimulation; and other noninvasive brain stimulation technologies. Additionally patients will have access to personalized cognitive rehabilitation for help with cognitive impairment, a common symptom of infection-associated complex chronic illnesses. The Center will also research novel therapies, including the role of multiple natural supplements...

Going backwards.

 

A good strategy BEFORE hiring a “scientific director” would be to read their resume and then to read all or most of the publications they list on their resume.

People on selection committees might conclude that a certain candidate might not be a good fit for scientific director if they did the above.

 

The Sick Times: 'New Long COVID and complex disease center at Mount Sinai set to be a leader in research, clinical care'

“Every brick of this center has been built by patients and their feedback...," Putrino said

"The CoRE team is “extremely innovative, extremely forward-thinking, and open to experiment,” as well as very “patient-oriented,” Bovin said.

 

I guess my feedback wasn’t taken into consideration.

 

@Jaybee00 , why do you say that? I want to believe in this group, but I'm too much of a cynic to begin with. Do you know something more tangible not to believe?

 

It's psuedoscience--see Jo Edward's post above.

 

Hype isn't always the same as pseudoscience, but I get your point. With all due respect to Jo Edwards, to fully appreciate the challenges, you'd have involve a Lyme expert.

It's a curious conflict for me. I've usually advocated for keeping these diseases distinct re: research.

Which brings me back to why I am attracted to this "concept."

 

https://twitter.com/user/status/1846652704736575994


In this article, @PutrinoLab responds to a patient who attended their facilities and dealt with unmasked staff by suggesting it must have been people in another office This is dishonest. I learned about this incident and informed him at the time. It was his own staff…

 

From Sick Times article:


“If this becomes a location clinic for every Long COVID patient in the world, I would say that our mission has failed,” Putrino said at the conclusion of the opening event last week. “This, I hope, is the clinic that’s going to launch a thousand clinics.”

Hmmm…

 

Copy of post by @Mij from the "News from USA thread".

New PolyBio supports & helps conceptualize long Covid rapamycin clinical trial

The trial will test a low dose of the drug rapamycin in participants across a 3-month period. Analysis of participant blood samples will determine if rapamycin improves components of the immune response that can control infection.

Medford MA, October 30, 2024 – PolyBio Research Foundation is excited to announce an $800,000 donation to the Icahn School of Medicine at Mount Sinai to support a clinical trial of the drug rapamycin in patients with long COVID. The trial will be conducted at CoRE: a clinic directed by Dr. David Putrino and PolyBio’s Dr. Amy Proal.

LINK

 

Why do this since Simmaron is also doing a trial?

 

https://twitter.com/user/status/1851684172995178874


They are just going to waste a sh*tload of money that could be used to fund something useful.

 

Does anyone know whether there is any serious scientific hypothesis behind this?
My limited knowledge of rapamycin is that it suppresses immune responses.
I do not see the logic of choosing a single low dose. A dose ranging study might make sense but giving a low dose of an immune modulating drug seems pretty pointless since most of these drugs only partially achieve what you want even at full dose.

 

From my personal experience of sample size N=1, the macro macrolide antibiotic Roxythromycin improved my physical and cognitive functioning a lot. I do not know how closely the two medications are related.

I took it at normal dose (300mgs/day) for 12 months or so with minimal side effects.

The suppliers to the UK hiked the price a lot as it was being used by quite a few ME / Lyme patients and I could no longer afford it. Roxy was not licensed in UK.

My husband referred to Roxy as the medication that gave him his wife back. As in, I was more recognisable cognitively and physically functioning wise as the person I used to be. Before severe ME symptoms.

 

From their blog linked by wigglethemouse, they cite a few things: