USA 2024: Want to participate in MAESTRO? Chronic Lyme; Long Covid

Advancing understanding of chronic illness following infection and identifying novel biomarkers of Lyme disease and Long COVID

The MIT MAESTRO study leverages leading edge technology through collaborations with academic and industry partners. The goal of our study is to investigate why some people develop illness from acute infection using the lens of both chronic Lyme and Long Covid- while also answering one very important question. Who is likely to develop chronic symptoms after infection and why?

We aim to identify biomarkers that can distinguish individuals who will or will not return to health and to generate actionable information that can advance clinical care, clinical trials, and future therapeutics.

https://talresearchgroup.mit.edu/mitmaestro

 

No phone number. Shame on them.

It may be a generation thing, but if I can't talk to somebody, I'm not filling out any questionnaire.

 

@duncan

According to the link, Principal Investigator, Dr. Michal Caspi Tal, PhD

https://www.bayarealyme.org/our-research/our-scientists/michal-caspi-tal-phd/

There is a phone number listed. Perhaps she could help provide more info?

 

That's Bay Area Lyme. How circuitous of them. Lol. Thanks @Mij , I'm going to call just to say WTF. Nicely. In a patronizing old guy sorta way.

 

You may wish to consider reading this article instead. See thread MIT Technology Review: Tackling long-haul diseases

 

Nice article. Thanks for sharing!

 

I read it a couple months back. I got screened by their automated questionnaire back then, flagged due to age. They can over-ride that. I'm curious enough about the integrity of the efforts, and the metrics being used, to try to get in - but I will need to talk to a human with PI authority.

They say some good stuff, only maybe that's just marketing. Historically, that's not a chronic Lyme friendly area - still, there have been some notable exceptions.

 

Unfortunately, I have zero confidence in this argument. It's a very rational argument that can be demonstrated using simple numbers, but it assumes that health care systems are rational and actually care about abandoning millions of people who don't have demonstrable pathology. We've seen how comfortable they have been in sacrificing the disabled, then being completely negligent in dealing with mass disability that they are responsible for. And that's on top of having been completely negligent with tens of millions of us for decades.

As we have seen, this capacity to never look up seems unlimited. Health care systems are unlikely to be overburdened until many years down the line, and the likely response would probably be to create pathways that more effectively neglect us. Problems only count when they're, well, counted. And there is so much effort going on in preventing any of this from being counted. It's all diffuse, the dots can't be joined. In economics this is called an externality, the costs borne by the whole of society for the failures of an industry. Those are the kinds of problems we never deal with unless they are overcome by events, when the circumstances basically solve the problem without effort.

I still think that AI will make all the difference here, properly counting the size of the problem and making it obviously cheaper to solve than leave to fester. The only real question is what time scale: before the next election cycle? feasible, long after? forget it. But all bets are off about what the response will be, given that the responsibility can largely be attributed on the medical profession and every single government in the world, pretty much the least accountable entities when it comes to their own failures, since they can decide what is legal and what isn't about their own actions. More or less, as permitted anyway.

Still, it's good to see people who see things for what they are. That's still such a rare thing. I wish them great success.

 

Merged thread

PR Newswire: MIT Selects Movano Health for Groundbreaking Study on Long COVID and Chronic Lyme Disease

MIT Selects Movano Health for Groundbreaking Study on Long COVID and Chronic Lyme Disease
Movano Press Release, 10 June 2024

 

MIT Maestro Study, currently recruiting

"We intend to probe the phenomenon of incomplete recovery by conducting observational, prospective research on 300 participants in 5 groups with 60 participants in each group. These include: Healthy Volunteers, Acute Lyme (< 4 wks), Chronic Lyme (> 1 yr), Long COVID (> 1 yr), and Suspected Lyme.

In order to get to the answers, the MAESTRO team will study samples taken from blood, saliva, and urine, as well as optional testing of sweat, throat swabs and/or vaginal/menstrual samples for detailed antibody quantification and metagenomics. Specifically, we are looking at immune responses to infection in different areas of the body like the blood and saliva, and we also want to see if we can identify genetic material of pathogens in various body fluids. We are leaving no stone unturned.

We will be testing eye movement, in addition to cognitive function testing and a hypermobility assessment, as the bacteria that causes Lyme disease (Borrelia burgdorferi) and the virus that causes COVID-19 (SARS-CoV-2) can both invade the brain and nerves. Patients also frequently report debilitating neurological symptoms.

Given the current weaknesses in diagnostic testing for Lyme disease, we are also curious to see if RightEye is able to detect subtle abnormalities in eye movement early in acute Lyme disease to potentially identify infection."