Amy Rochlin retweeted
For anyone getting into biology, please consider taking airborne disease resistance more seriously.
It's a super important area of medicine that is a huge cause of death and sickness but easily gets forgotten. We're likely to get many more airborne plagues in the future due to the combination of not just extremely dense and interconnected society (including city and farm animals), but also accidents from bio research and offensive biotech (both from random people and from secret government programs that can easily get themselves exempted from safety restrictions), all enhanced by powerful AI.
Right now, this area is getting way less love than longevity research (which continues to be super important!), but it's an area where there are lots of unclaimed wins that we know exactly how to do (but are not yet doing) with present-day tech:
* early detection
* passive universal testing
* filtration/ventilation/UVC
* better vaccines (including making them open source and open science)
* cryptography to make all of the above privacy-preserving
We can have China-level pandemic resistance with Sweden-level limited intrusion into people's lives, and then go even further. We just have to actually do the work for it.
It's a super important area of medicine that is a huge cause of death and sickness but easily gets forgotten. We're likely to get many more airborne plagues in the future due to the combination of not just extremely dense and interconnected society (including city and farm animals), but also accidents from bio research and offensive biotech (both from random people and from secret government programs that can easily get themselves exempted from safety restrictions), all enhanced by powerful AI.
Right now, this area is getting way less love than longevity research (which continues to be super important!), but it's an area where there are lots of unclaimed wins that we know exactly how to do (but are not yet doing) with present-day tech:
* early detection
* passive universal testing
* filtration/ventilation/UVC
* better vaccines (including making them open source and open science)
* cryptography to make all of the above privacy-preserving
We can have China-level pandemic resistance with Sweden-level limited intrusion into people's lives, and then go even further. We just have to actually do the work for it.
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This is an excellent resource for patients. I'd add to Dr. T's thinking that understanding response to these mechanisms may be integral to finding out how other treatments may work (or not work) for you. Looking deeper - beyond symptoms - and into biological mechanisms, as well as the interaction of symptoms presents great opportunity.
One of the most helpful things you can do for yourself as a patient is to begin to understand the biological mechanisms underlying the dysfunctions and symptoms you are experiencing.
Remember!! Treating symptoms and treating disease are not the same thing. Taking benzos or LDN or LDA or beta-blockers can help control symptoms of MECFS for some people but they cannot correct the dysfunction that is giving rise to the symptoms. For that we need an entirely different approach.
The first step to understanding how you can begin to take a bit more control of your condition is the right information. A little bit of knowledge can go a long way once you realize what is important to understand.
Bite size visual lessons are a great way of learning the basics. One of the biggest stumbling blocks I see in how patients approach treatment protocols is that they don't have any understanding of what is needed to start to address dysfunction.
In the end this means most people waste years following protocols with little real chance of moving the needle - just controlling symptoms is NOT enough.
We are not getting enough help from the medical community. Patients need clear options but we also need to understand the theory - not everything is right for everyone and complex protocols really are going to be essential. As much as we all wish for a major bullet - it is not going to be how people recovery from these types of conditions.
I think this is a great project and one that has the potential to really help patients. Excited to see where it goes. Amazing initiative @manruipa
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Amy Rochlin retweeted
The body of evidence is abundant that macrophages are key in chronic pain - they are to pain what mast cells are to itch
Tissue-resident macrophages sense colonic stiffening via Piezo1, releasing NGF to sensitize TRPV1+ nociceptors for visceral pain @SciImmunology
science.org/doi/10.1126/sc… 🇨🇳
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Amy Rochlin retweeted
@amyrochlin @HHSGov If you like our submission please vote for us!
invisibleillness.crowdicity.com/post/896951
invisibleillness.crowdicity.com/post/896951
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Please register quickly and vote with a thumbs up for MAESTRO Health Innovators! invisibleillness.crowdicity.com/post/896951
THANK YOU!!!
THANK YOU!!!
Help us make invisible illness visible!
Register and VOTE NOW with a quick thumbs up for the MAESTRO Health Innovators Measure it to Cure it team: invisibleillness.crowdicity.com/post/896951
CODA is proud to partner with @MIT_TRG and an extraordinary team of researchers in the @HHSGov TOPx ation Challenge.
Our project, Measure It to Cure It, uses AI to build on MIT's MAESTRO study and its CAPRIO initiative, which uses nailfold capillaroscopy to help detect potential microvascular abnormalities in patients with Long COVID, ME/CFS, POTS, and related conditions.
Thank you for your amazing support!
@ImmunoFever @MIT_TRG @mhornig @technopolymath @TomerTalVH @amyrochlin
@tylerdmyers
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These types of data partnerships matter. Ensuring LLMs have access to high-quality, clinically relevant data, guided by the right scientific expertise, will be critical to advancing healthcare research, diagnostics, and treatments.
Over 85% of oncologists at Memorial Sloan Kettering Cancer Center use OpenEvidence.
Together, @MSKCancerCenter and OpenEvidence have built OncoKB, MSK’s expert interpretation of a tumor’s genetics, directly into OpenEvidence, putting it in the hands of oncologists across the Anaeze Offodile puts it: “Our mission is to end cancer for life.” As of today, we are widening OncoKB’s reach so that patients everywhere benefit from the same rigor as patients at MSK. Watch the story.
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I want to take a moment to explain the @HHSGov TOPx Sprint competition and why it matters so much for patients living with invisible illnesses: ME/CFS, Long COVID, POTS/orthostatic intolerance, EDS/HSD, MCAS and related disorders.
Our collaborative research team has the possibility of securing $1 million to advance diagnostics and treatments for conditions that have been overlooked for far too long.
When Dr. Mikki Tal learned of the competition, she reached out to a group of experts in the field with an idea: bring together a research "super team" that could combine our expertise, technologies, and programs to accelerate progress.
And the MAESTRO Health Innovators team was born.
Here's how the pieces came together.
@MIT's MAESTRO, the largest clinical study in MIT's history, led by @MIT_TRG, focuses on collecting meaningful physiological and biological measurements from patients with complex chronic illnesses to better understand what's happening in their bodies and identify actionable biomarkers.
Through this work, researchers began exploring the promise of nailfold capillaroscopy, a quick, noninvasive way to visualize the tiny blood vessels near our fingernails. Could this technology help reveal abnormalities in the microvasculature that might otherwise go undetected? Could these measurements help us better understand disease mechanisms and ultimately guide treatment?
From this promising line of investigation, MIT CAPRIO was born, with the ambition of creating the largest nailfold capillaroscopy dataset and studying whether these measurements can help identify meaningful biological patterns across patients.
At the same time, @CODA_research launched the CODA Vascular Initiative, to advance diagnostics and treatments focused on microvascular dysfunction (problems affecting the body's smallest blood vessels) and endothelial dysfunction (when the cells lining blood vessels fail to properly regulate blood flow, inflammation, and clotting).
We also launched CODA's AI research program to help researchers analyze complex data, identify patterns across biological systems, and accelerate scientific discovery.
And here's where bringing these programs and experts together gets really exciting.
Our team developed Measure it to Cure it, an AI-powered platform designed to help answer some fundamental questions: What should we be measuring in patients? Which measurements can meaningfully distinguish illness from health? And how do we get promising diagnostic technologies into the hands of clinicians and patients who need them?
The platform already connects 37 public data sources, bringing together information on disease burden, research evidence, clinical trials, healthcare facilities, and emerging measurement technologies.
CAPRIO provides a real-world opportunity to test this approach, starting with nailfold capillaroscopy. The team plans to expand capillaroscopy efforts, creating opportunities to collect data, evaluate the technology, and help more patients access objective testing.
And this approach can extend beyond capillaroscopy to other technologies that measure what's happening inside the body.
For too long, patients have lived with debilitating symptoms while being told their tests look normal. We need better ways to measure the physiological and biological abnormalities that may be driving their illnesses.
We want to make the invisible visible.
That's what this competition represents . An opportunity to bring extraordinary researchers together, build on the science already underway, and accelerate the path toward meaningful answers and better treatments for patients.
Voting will start soon and we hope you're support this collaborative effort! Our goal will be to include clinicians and other research organizations however possible.
Patients can't wait. Neither will we.
@ImmunoFever @mhornig @TomerTalVH @tylerdmyers @technopolymath Paige Hansen Colburn
WATCH HERE: youtube.com/watch?v=53zp-O…
Our collaborative research team has the possibility of securing $1 million to advance diagnostics and treatments for conditions that have been overlooked for far too long.
When Dr. Mikki Tal learned of the competition, she reached out to a group of experts in the field with an idea: bring together a research "super team" that could combine our expertise, technologies, and programs to accelerate progress.
And the MAESTRO Health Innovators team was born.
Here's how the pieces came together.
@MIT's MAESTRO, the largest clinical study in MIT's history, led by @MIT_TRG, focuses on collecting meaningful physiological and biological measurements from patients with complex chronic illnesses to better understand what's happening in their bodies and identify actionable biomarkers.
Through this work, researchers began exploring the promise of nailfold capillaroscopy, a quick, noninvasive way to visualize the tiny blood vessels near our fingernails. Could this technology help reveal abnormalities in the microvasculature that might otherwise go undetected? Could these measurements help us better understand disease mechanisms and ultimately guide treatment?
From this promising line of investigation, MIT CAPRIO was born, with the ambition of creating the largest nailfold capillaroscopy dataset and studying whether these measurements can help identify meaningful biological patterns across patients.
At the same time, @CODA_research launched the CODA Vascular Initiative, to advance diagnostics and treatments focused on microvascular dysfunction (problems affecting the body's smallest blood vessels) and endothelial dysfunction (when the cells lining blood vessels fail to properly regulate blood flow, inflammation, and clotting).
We also launched CODA's AI research program to help researchers analyze complex data, identify patterns across biological systems, and accelerate scientific discovery.
And here's where bringing these programs and experts together gets really exciting.
Our team developed Measure it to Cure it, an AI-powered platform designed to help answer some fundamental questions: What should we be measuring in patients? Which measurements can meaningfully distinguish illness from health? And how do we get promising diagnostic technologies into the hands of clinicians and patients who need them?
The platform already connects 37 public data sources, bringing together information on disease burden, research evidence, clinical trials, healthcare facilities, and emerging measurement technologies.
CAPRIO provides a real-world opportunity to test this approach, starting with nailfold capillaroscopy. The team plans to expand capillaroscopy efforts, creating opportunities to collect data, evaluate the technology, and help more patients access objective testing.
And this approach can extend beyond capillaroscopy to other technologies that measure what's happening inside the body.
For too long, patients have lived with debilitating symptoms while being told their tests look normal. We need better ways to measure the physiological and biological abnormalities that may be driving their illnesses.
We want to make the invisible visible.
That's what this competition represents . An opportunity to bring extraordinary researchers together, build on the science already underway, and accelerate the path toward meaningful answers and better treatments for patients.
Voting will start soon and we hope you're support this collaborative effort! Our goal will be to include clinicians and other research organizations however possible.
Patients can't wait. Neither will we.
@ImmunoFever @mhornig @TomerTalVH @tylerdmyers @technopolymath Paige Hansen Colburn
WATCH HERE: youtube.com/watch?v=53zp-O…
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Amy Rochlin retweeted
I can't wait for our @HHSGov #TOPx Tech Sprint for AI and Invisible Illness MVP today!!! Phase 2 has been very exciting. We're the MAESTRO Health Innovators demonstrating how we can MEASURE it to CURE it: AI Powered Clinical Innovation! Learn more at: talresearchgroup.mit.edu/maestro-health…
Meet the team behind MAESTRO Health Innovators!
Mady Hornig, Michal Caspi Tal, Nasa Sinnott-Armstrong, Amy Rochlin, Tyler Myers, Tomer Tal & Paige Hansen Colburn bring together expertise across biomedical research, complex disorders & Al.
Learn more: youtu.be/53zp-OtNWsA
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Things move faster when we work together.
Thrilled to partner with these incredible minds.
Thrilled to partner with these incredible minds.
We’re proud to introduce the multidisciplinary team behind MAESTRO Health Innovators, selected as a Phase 1 winner of the HHS/NIH TOPx Tech Sprint for AI and Invisible Illness and advancing to Phase 2. @HHSGov
Bringing together experts in clinical research, vascular biology, ence, the team is working to better understand how biological differences across patients with complex chronic disorders may inform more targeted approaches to testing and treatment.
Meet the team:
- Dr. Michal Tal, PhD @ImmunoFever
- Paige Hansen Colburn @MIT_TRG
- Amy Rochlin @amyrochlin
- Tyler Myers, PhD - @tylerdmyers
- Nasa Sinnott-Armstrong, PhD @technopolymath
- Mady Hornig, MA, MD @Madyhor
- Tomer Tal, PhD @TomerTalVH
This collaboration reflects CODA’s commitment to bringing together expertise across disciplines to accelerate research toward better answers and treatments for patients.
Visit the link in our bio to watch a video and learn more about MAESTRO Health Innovators’ research for the TOPx HHS Tech Sprint. youtube.com/watch?v=53zp-O…
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Thanks @bhanlon15!
This paper raises an issue I've been trying to shout from the rafters that we too often ignore: patients with orthostatic intolerance can have very different underlying physiological mechanisms, yet we continue to categorize them as one population. Not everyone with orthostatic intolerance has positional tachycardia. POTS is just one part of a much broader clinical picture. And that matters enormously when it comes to treatment.
How many times have I heard a patient say, almost sheepishly, "Well, I don't have POTS, but I have something impacting my autonomic nervous system."
Yes, you do. Just because your heart rate doesn't increase by 30–40 beats per minute when you stand doesn't mean you aren't experiencing orthostatic intolerance. Your symptoms deserve to be taken seriously, your physiology deserves to be investigated, and you deserve an accurate diagnosis that can guide the right treatment. SO do the patients who are positionally tachycardic.
Across the spectrum of orthostatic intolerance, some patients experience positional tachycardia, others experience presyncope or significant symptoms without an elevated heart rate. Some experience episodes of tachycardia at other times, including during sleep. And many have overlapping abnormalities in autonomic and vascular function. These patterns may reflect different physiological mechanisms, and we need to understand what drives them.
An elevated heart rate may be the body's way of compensating for inadequate circulation. Treating it can provide meaningful relief for patients who benefit, and that matters enormously. But it doesn't necessarily address the underlying dysfunction.
Let's diagnose patients accurately rather than labeling everyone with orthostatic intolerance as having POTS. We need to understand the physiology driving each patient's symptoms so we can treat what's actually going wrong.
This paper raises an issue I've been trying to shout from the rafters that we too often ignore: patients with orthostatic intolerance can have very different underlying physiological mechanisms, yet we continue to categorize them as one population. Not everyone with orthostatic intolerance has positional tachycardia. POTS is just one part of a much broader clinical picture. And that matters enormously when it comes to treatment.
How many times have I heard a patient say, almost sheepishly, "Well, I don't have POTS, but I have something impacting my autonomic nervous system."
Yes, you do. Just because your heart rate doesn't increase by 30–40 beats per minute when you stand doesn't mean you aren't experiencing orthostatic intolerance. Your symptoms deserve to be taken seriously, your physiology deserves to be investigated, and you deserve an accurate diagnosis that can guide the right treatment. SO do the patients who are positionally tachycardic.
Across the spectrum of orthostatic intolerance, some patients experience positional tachycardia, others experience presyncope or significant symptoms without an elevated heart rate. Some experience episodes of tachycardia at other times, including during sleep. And many have overlapping abnormalities in autonomic and vascular function. These patterns may reflect different physiological mechanisms, and we need to understand what drives them.
An elevated heart rate may be the body's way of compensating for inadequate circulation. Treating it can provide meaningful relief for patients who benefit, and that matters enormously. But it doesn't necessarily address the underlying dysfunction.
Let's diagnose patients accurately rather than labeling everyone with orthostatic intolerance as having POTS. We need to understand the physiology driving each patient's symptoms so we can treat what's actually going wrong.
Springer Nature: 'Are we treating the wrong POTS in RECOVER-AUTONOMIC? A call for phenotype subtyping'
'Letter to the Editor'
link.springer.com/article/10.100…
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What AI can do to accelerate scientific research is remarkable, especially in the hands of experts. It has a brain that doesn't get tired - it can compute at remarkable speed and it can find data that could take years to uncover. Using the strongest available technologies to add speed and accuracy sits at the center of every stage of research progress.
GPT-Rosalind surfaced a new lead for drug discovery: could restoring cholesterol transport protect neurons from degeneration?
DCTN1 is a gene linked to Perry syndrome, a rare neurodegenerative disorder. In mouse-brain data, disrupting it increased expression of genes involved in making cholesterol. GPT-Rosalind suggested a possible explanation: cholesterol may not be reaching where neurons need it.
That gives scientists a specific mechanism to test and, if confirmed, a direction for developing new treatments for neurodegenerative disorders.
With @perturbai_tx and @scrippsresearch, a team of thousands of GPT-Rosalind agents worked in parallel, connecting gene-expression results from millions of mouse brain cells with scientific literature in just 32 minutes. We’re now expanding this collaboration to identify new drug targets.
openai.com/index/scaling-…
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Moving Beyond Diagnoses: A Cross-System Approach to Complex Chronic Illness
Today, patients often receive diagnoses based on the organ system where their symptoms appear. A neurologist diagnoses migraine, a cardiologist diagnoses POTS, a gastroenterologist identifies dysmotility, and an immunologist investigates immune abnormalities.
Yet these symptoms may reflect disturbances across interacting immune, nervous, vascular, endocrine, and metabolic systems. Understanding how these systems interact may be critical to helping patients get diagnosed and treated more effectively.
At @CODA_research, we see an opportunity to develop a cross-system approach that connects what patients experience with measurable biological abnormalities, regardless of which diagnosis brought them into care.
What could this look like?
1. Identify cross-system patterns. Look beyond individual diagnoses to understand which combinations of symptoms, physiological abnormalities, and biomarkers recur across patients with different conditions.
2. Measure the underlying dysfunction. Connect symptoms to objective testing, including autonomic function, cerebral blood flow, microvascular function, immune activity, and metabolic regulation. The goal is to understand which biological processes may be contributing to an individual patient's illness.
3. Connect findings to treatment. Use these measurements to guide further evaluation, bring the right specialists together, identify appropriate treatments, and develop more targeted clinical trials.
4. Learn from treatment responses. Follow patients over time to understand which interventions improve symptoms and function, which biological patterns predict response, and how treating one system may affect others.
(To me, #2 is especially critical right now. We already recognize that patients across these conditions share many overlapping symptoms and clinical features. One of the biggest gaps is connecting what patients experience to reproducible, objective measurements of abnormalities such as microvascular dysfunction, impaired cerebral blood flow, altered autonomic regulation, and gastrointestinal dysmotility. Understanding how these systems function, interact, and communicate may help us identify the biological pathways driving symptoms and, importantly, where we can intervene.)
Patients don't experience their illnesses one organ system at a time. Our approach to diagnosis, research, and treatment needs to reflect that.
The goal is to help patients understand what's happening in their bodies and give clinicians better tools to act on it.
I'd love to hear thoughts from the researchers, clinicians, patients, and caregivers.
Today, patients often receive diagnoses based on the organ system where their symptoms appear. A neurologist diagnoses migraine, a cardiologist diagnoses POTS, a gastroenterologist identifies dysmotility, and an immunologist investigates immune abnormalities.
Yet these symptoms may reflect disturbances across interacting immune, nervous, vascular, endocrine, and metabolic systems. Understanding how these systems interact may be critical to helping patients get diagnosed and treated more effectively.
At @CODA_research, we see an opportunity to develop a cross-system approach that connects what patients experience with measurable biological abnormalities, regardless of which diagnosis brought them into care.
What could this look like?
1. Identify cross-system patterns. Look beyond individual diagnoses to understand which combinations of symptoms, physiological abnormalities, and biomarkers recur across patients with different conditions.
2. Measure the underlying dysfunction. Connect symptoms to objective testing, including autonomic function, cerebral blood flow, microvascular function, immune activity, and metabolic regulation. The goal is to understand which biological processes may be contributing to an individual patient's illness.
3. Connect findings to treatment. Use these measurements to guide further evaluation, bring the right specialists together, identify appropriate treatments, and develop more targeted clinical trials.
4. Learn from treatment responses. Follow patients over time to understand which interventions improve symptoms and function, which biological patterns predict response, and how treating one system may affect others.
(To me, #2 is especially critical right now. We already recognize that patients across these conditions share many overlapping symptoms and clinical features. One of the biggest gaps is connecting what patients experience to reproducible, objective measurements of abnormalities such as microvascular dysfunction, impaired cerebral blood flow, altered autonomic regulation, and gastrointestinal dysmotility. Understanding how these systems function, interact, and communicate may help us identify the biological pathways driving symptoms and, importantly, where we can intervene.)
Patients don't experience their illnesses one organ system at a time. Our approach to diagnosis, research, and treatment needs to reflect that.
The goal is to help patients understand what's happening in their bodies and give clinicians better tools to act on it.
I'd love to hear thoughts from the researchers, clinicians, patients, and caregivers.
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"Doctors tend to be more concerned about the chance that someone will develop long Covid from repeated infections than they are that a person will get very sick in the acute phase of the illness. Covid can cause long-term damage to nearly every part of the body and repeated cases can compound those harms." @nytimes
nytimes.com/2026/10/19/wel…
nytimes.com/2026/10/19/wel…
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