Several new medical research centers are tackling the most difficult cases of chronic illness triggered by infection. Each of these centers will be extending their growing knowledge to solving the puzzle of chronic Lyme. Yes, you heard that correctly.

The centers include Mount Sinai’s Department of Rehabilitation and Human Performance. Tufts’ Lyme Disease Initiative, Yale’s Center for Infection & Immunity, and Massachusetts Institute of Technology (MIT) Department of Biological Engineering MAESTRO study.

Add to this the groundbreaking research coming out of Johns Hopkins Medicine Lyme Disease Research Center, and Columbia University Lyme and Tick-Borne Disease Research Center and we have reason to celebrate.

Infection-associated chronic illness

At the National Academies of Sciences, Engineering, and Medicine (NASEM) workshop for infection-associated chronic illness last June, researchers came together to discuss a common research agenda to help determine why some patients remain ill.

As LymeDisease.org CEO Lorraine Johnson explained at the time, “these conditions are frequently neglected in research and medicine. As a result, patients who become profoundly ill are unable to receive treatment. This workshop brings together patients, clinicians, and researchers to build a collaborative effort among these communities to improve care.”

And just three months later, we’re seeing progress. Yale immunology professor Akiko Iwasaki, PhD has launched a center that will incorporate a “patient-partner model” that uses patients’ feedback to shape ongoing clinical trials.

“I think that’s the future of science,” said Iwasaki. “The patients are their own experts, and how they perceive the disease and how they interpret it and tell us about the disease has been incredibly informational and instructive for us.”

LymeDisease.org, now with over 17,000 patients enrolled in our MyLymeData study, has long advocated for evidence-based, patient-centered care.

Mount Sinai’s CoRE Center

Recently Mount Sinai’s Department of Rehabilitation and Human Performance announced a $6.2 million grant from the Steven & Alexandra Cohen Foundation.

The Cohen Center for Recovery From Complex Chronic Illnesses (CoRE) currently encompasses research and clinical care for patients with long COVID. With the new funding, CoRE will expand its reach to include chronic Lyme disease as well as other infection-associated complex chronic illnesses.

David Putrino, PhD is a Physical Therapist, Professor of Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai and the Director of Rehabilitation Innovation for the Mount Sinai Health System. Dr. Putrino will serve as the Nash Family Director of CoRE.

“For decades, people with long Lyme disease have struggled to find centers that can provide knowledgeable and compassionate care for their serious and debilitating symptoms,” he says.

With millions of people suffering from infection-associated chronic illness, Dr. Putrino says CoRE is not looking to become a “destination center.” Instead, their plan is to document clinical strategies that can be easily replicated at other treatment centers.

Once they have clear evidence, CoRE will offer free medical education so that others can duplicate their successes.

You can watch Dr. Putrino’s NASEM presentation video 4 – Day 2, Session 7 beginning at 1:16:30 here.

Tufts Lyme Disease Initiative

Several teams of scientists affiliated with Tufts University’s Lyme Disease Initiative have recently received grants totaling more than $7 million to attack Lyme disease from multiple angles.

Amongst their many projects, Tufts will study blood and tissue samples from patients with Lyme disease to help find markers for persistent infection.

“Lyme patients whose symptoms persist have elevated levels of autoantibodies against phospholipids as compared to patients whose symptoms fully resolved,” says Peter Gwynne, PhD, who is research assistant professor at Tufts University School of Medicine.

“It may be that they still are infected, in which case testing for phospholipid antibodies may be a way to identify persistent infection.”

Tufts is also working on developing an anti-tick drug that will kill ticks before they have a chance to transmit infections to humans. The drug is already used to prevent tick-borne disease in dogs.

“If the drug works as well in humans as it does in dogs, this could be a game changer,” says Professor Linden Hu, principal investigator for the study. “The drug could be taken once before someone goes camping, for example, or be taken by someone who lives in a tick-infested area and protect that person against multiple tick-borne diseases for 1-3 months.”

Yale Center for Infection and Immunity

In August, the Yale School of Medicine launched its new Center for Infection and Immunity (CII). The center will research post-acute infection syndromes, including long COVID and chronic Lyme disease.

“The pandemic has opened the world’s eye to the fact that many chronic illnesses have been largely ignored, dismissed, and ridiculed,” says Akiko Iwasaki, Ph.D., a Professor of Immunobiology and Molecular, Cellular, and Developmental Biology at Yale University.

“Long COVID has taught the world that these diseases are real, there is a biological basis for them, and we need to study them.”

CII will not have a physical space until 2025 and will operate out of Iwasaki’s lab in the interim. They have nine preclinical trials already lined up, with two already going.

MIT’s MAESTRO Study

Michal Caspi Tal, PhD and her Tal Research Group at Massachusetts Institute of Technology (MIT) were recently awarded $2 million over five years to study Lyme disease.

Dr. Tal is the principal scientist of biological engineering at MIT. Her research group is broadly investigating chronic illness by testing for infectious agents, while conducting deep immune profiling, and looking for potential biomarkers.

Tal’s research group is currently conducting the MAESTRO (Mucosal And systEmic Signatures Triggered by Responses to infectious Organisms) study. It’s examining long COVID, as well as acute and chronic Lyme disease.

Because the bacteria that causes Lyme disease (Borrelia burgdorferi), and the virus that causes COVID-19 (SARS-CoV-2) can both infect the brain and nervous system, the study will look for specific neurological signs, symptoms and markers.

“Long COVID and chronic Lyme share so many features that it’s uncanny,” said Dr. Tal, “In terms of clinical presentation, [long COVID and chronic Lyme] look like the same disease even though one is caused by a virus and one by bacteria,”

The goal of the MAESTRO study is to investigate why some people develop chronic illness from these acute infections while also answering one very important question: Who is likely to develop chronic symptoms after infection and why?

Now, wouldn’t we all like to know the answer to that question!

LymeSci is written by Lonnie Marcum, a Licensed Physical Therapist and mother of a daughter with Lyme. She served two terms on a subcommittee of the federal Tick-Borne Disease Working Group. Follow her on Twitter: @LonnieRhea  Email her at: lmarcum@lymedisease.org.