Putrino Lab to Open a Center in 2024

May offer services to people with Myalgic Encephalomyelitis

Obtaining medical care for myalgic encephalomyelitis (ME) is very difficult.  There is no cure, but there is knowledge about what causes many of our symptoms.  Experts with extensive experience in treating people with ME wrote the ME International Consensus Primer in 2012.  In the IC Primer there is a “Personalized Management and Treatment” section that starts on page 13.  Unfortunately, finding a doctor willing to utilize this information is difficult.

It is with interest that I saw Putrino Lab announce they are working toward providing clinical care to people in the Long COVID community.  Within that project, they will be pursuing care for similar post viral conditions.  My sincere hope is that they will take advantage of the wisdom presented by doctors who had extensive experience decades before Long COVID arrived.  

From what I have seen, it does not look like Long COVID and ME are the same thing, but it is certainly possible that treatment for similar symptoms can be utilized across many of these patient groups.

Blue skies above our house.

Announcement

The recent post on Threads from Putrino Lab stated the following.  (Copy and pasted with permission)

“I am humbled to announce that thanks to a generous grant from @cohengive our #LongCOVID center (opening early 2024) will work to understand the differences and similarities between LC and #Lyme, #MECFS and other infection-associated chronic illnesses. 

I am honored to be partnering with @microbeminded2 [Amy Proal] and @polybioRF, [Polybio Research Foundation] who will lead our scientific discovery initiatives and clinical trials. 

At the heart of this center is providing rapid innovation and translation of research and accessible and affordable care for those with 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!”

Who is Putrino Lab?

On Threads they list themselves as

“Science. Technology. Complex chronic illness. Disability.”

Their website states:  

"We are a group of scientists, clinicians, engineers, artists, and story-tellers with one collective goal: using technology to help people perform better. It doesn't matter if you're recovering from a stroke or preparing for the Olympics, we use technology to build communities, empower, treat and inform.

As well as developing our own solutions, we work with health technology startups, helping them bridge the gap between early-stage ideas and a ready-for-market product by conducting world-class clinical research

The Putrino Lab operates out of the Abilities Research Center at Mount Sinai Hospital in New York City, NY (USA)."

My Thoughts

I am grateful those involved with this project, based on previous information, seem to understand the importance of stratifying between those patient groups and hopefully also within the ME/CFS broad criteria.

One size does not fit all within the ME/CFS (or CFS) patient groups who are too often misdiagnosed due to lack of testing to screen for other diseases.  I am hoping that as part of their research, they will share the importance of ruling out other conditions.  

Hoping for better days ahead for all of us!

Colleen

P.S.: A good place to start to understand the ME diagnosis is to use the Myalgic Encephalomyelitis International Consensus Criteria (ME-ICC) and the ME International Consensus Primer.  An easy way to see if a person fits the ICC can be found on the Swiss Society for ME & CFS website HERE.  Links to information about the ME-ICC can be found HERE. 

Information provided here or in comments is not to be considered medical advice