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

Mij

Mij

Senior Member (Voting Rights)
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
 
duncan said:
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.
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I'm going to call just to say WTF. Nicely. In a patronizing old guy sorta way.
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You may wish to consider reading this article instead. See thread MIT Technology Review: Tackling long-haul diseases

Michal Caspi Tal said:
Perhaps even more alarming than the disease has been the medical community’s response to it. “I realized that there’s this public health debacle around Lyme, and it’s, for lack of a better word, obscene,” Tal says. Chronic Lyme patients skew female, and for decades, clinicians have dismissed their symptoms as signs of mental illness. The medical establishment has “done nothing but call them crazy,” Tal says, “instead of admitting that they just don’t understand what’s going on.”
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“Long covid looks exactly, and I mean exactly, like chronic Lyme.”
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“We’ve let men dictate the direction of research funding for so long,” Tal says. Traditionally, studies focused on male subjects, and a 1977 FDA policy barred women from participating in most clinical trials in the US in the wake of birth defects caused by thalidomide. It wasn’t until 1993 that federal law required studies to include women and minorities. This, coupled with other sex- and gender-based medical biases, means that many female-dominated diseases remain under-researched. “So much of this research is being done on males, male mice—male, male, male,” Tal says. “And I’m like, no.”
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“Mikki is really a leader about thinking about sex differences in immunology,” says Linda Griffith, director of MIT’s Center for Gynepathology Research (CGR) and the School of Engineering Professor of Teaching Innovation of Biological and Mechanical Engineering. “She is extremely fearless. She’s not going to go along with the crowd because she wants to be liked.
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In her first two years at MIT, Tal and her research group put together MIT MAESTRO, a 300-participant study looking for objective biomarkers for chronic Lyme and long covid. (Tal’s team—some of whom have personal experience with these diseases—is orchestrating the work of many labs and companies with different kinds of expertise
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The explosive appearance of millions of covid long-haulers, many of them doctors and nurses, has upended entrenched beliefs about infection-triggered chronic diseases—namely, that they are psychosomatic or an excuse to get out of work. Tal recalls a recent conference where the keynote speaker, acknowledging the eye-opening fact of long covid, apologized for what he had written in the past about chronic Lyme.
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As covid infections continue to surge, and as climate change pushes ticks into new habitats, finding out the causes of these conditions and coming up with cures will become ever more essential. Without treatments, many patients are facing a lifetime of disabling symptoms. Tal hopes to find the funding to expand MAESTRO to include more patients over 65, since both epidemiology data and their complementary research with mice suggest that symptoms worsen with age. And the impact could spread beyond long covid and Lyme patients as well. “If we do nothing, we’re going to crush our health systems,” Tal says, “because they’re not equipped for this level of chronic illness.”
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SNT Gatchaman said:
You may wish to consider reading this article instead.
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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.
 
And the impact could spread beyond long covid and Lyme patients as well. “If we do nothing, we’re going to crush our health systems,” Tal says, “because they’re not equipped for this level of chronic illness.”
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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.
 
“We’ve let men dictate the direction of research funding for so long,” Tal says.

Bringing women researchers into the ME/CFS field doesn't seem to have made much difference. Some of the leading lights in the psychogenic school are female. If anything they have only given legitimacy to the men's pre-existing views by removing the criticism that there are not enough women involved.
 
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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

In a strategic move that could reshape the understanding of long COVID and chronic Lyme disease, the Massachusetts Institute of Technology (MIT) has forged a partnership with Movano Health for its MAESTRO study to harness the medical grade continuous health monitoring capabilities of Movano's Evie Ring.
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The MAESTRO study, a comprehensive study using the latest advancements in medical research, will recruit 300 adults aged 18-35 across four distinct cohorts: those with acute Lyme disease, chronic Lyme disease, long COVID, and a control group.
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"We're excited to incorporate the Evie Ring into our clinical study to evaluate the progression of long COVID and chronic Lyme disease and paint a fuller picture of why some people bounce back from a mild infection while others go on to endure prolonged suffering," said Dr Michal Caspi Tal, Associate Scientific Director, the MIT Center for Gynepathology Research and head of the Tal Research Group.
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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."
 
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