Most people think of an endowed chair as a transaction. A gift is made, a title is given, and that’s the end of it.
In my case, it is only the beginning of an incredible journey. It is an inspired partnership and friendship with a shared belief in a better future for patients.
d to be installed as the Robin and Jack Ross Chair of Bioelectronic Medicine and Neuroimmunology at the The Feinstein Institutes at @NorthwellHealth.
Over the past year and a half, I’ve gotten to know Robin and Jack, and it has been truly remarkable to see how invested they are in the science, in the vision, and in me personally. They didn’t just fund a field of research. They are spiritually invested in it. I am deeply humbled by their belief in this work.
An endowed chair is a long-term bet on science that takes time to pay off. I’m grateful to the Rosses for making that bet, and to Robin and Jack for being friends and champions along the way. I speak to Robin at least twice a week and it keeps us both inspired about building the most ambitious future for Feinstein and Northwell!
Thank you also to my colleagues, trainees, and mentors, who make the science possible. The most important discoveries in medicine come from teams, and I’m lucky to be part of a great one. Special thank you to John D'Angelo, Kevin Beiner, and last but not least - @KevinJTraceyMD - for trusting me with the honor of the Ross Chair. Thank you to my wife @lilcham314 for supporting me and my family in every way.
I’m excited for what’s ahead in neuroimmunology and bioelectronic medicine, and most of all for the patients who will benefit. It always begins and ends with our patients.
In my case, it is only the beginning of an incredible journey. It is an inspired partnership and friendship with a shared belief in a better future for patients.
d to be installed as the Robin and Jack Ross Chair of Bioelectronic Medicine and Neuroimmunology at the The Feinstein Institutes at @NorthwellHealth.
Over the past year and a half, I’ve gotten to know Robin and Jack, and it has been truly remarkable to see how invested they are in the science, in the vision, and in me personally. They didn’t just fund a field of research. They are spiritually invested in it. I am deeply humbled by their belief in this work.
An endowed chair is a long-term bet on science that takes time to pay off. I’m grateful to the Rosses for making that bet, and to Robin and Jack for being friends and champions along the way. I speak to Robin at least twice a week and it keeps us both inspired about building the most ambitious future for Feinstein and Northwell!
Thank you also to my colleagues, trainees, and mentors, who make the science possible. The most important discoveries in medicine come from teams, and I’m lucky to be part of a great one. Special thank you to John D'Angelo, Kevin Beiner, and last but not least - @KevinJTraceyMD - for trusting me with the honor of the Ross Chair. Thank you to my wife @lilcham314 for supporting me and my family in every way.
I’m excited for what’s ahead in neuroimmunology and bioelectronic medicine, and most of all for the patients who will benefit. It always begins and ends with our patients.
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@itchdoctor Amazing! And a huge congrats. Let’s do great things.
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It's an honor to be selected as a winner of the National Academies Eric and Wendy Schmidt Awards for Excellence in Science Communications (@SciCommAwards )!
Learn more: nationalacademies.org/news/national-…
Learn more: nationalacademies.org/news/national-…
Congratulations to the 2026 winners of the National Academies Eric and Wendy Schmidt Awards for Excellence in Science Communications given by @theNASEM in partnership with @schmidtsciences!
Learn more about the winners: nationalacademies.org/news/national-… #scicomm
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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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MICROSCOPY.
Making the invisible visible since 1590.
(Yes, those little white balls are actually immune cells flowing through the tinniest blood vessels! Imaged painlessly, non-invasively through the skin)
Making the invisible visible since 1590.
(Yes, those little white balls are actually immune cells flowing through the tinniest blood vessels! Imaged painlessly, non-invasively through the skin)
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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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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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No healthy person will ever understand how terrifying it is having to try random drugs in hopes they might help you, while knowing they could equally make you 10x more ill.
But the alternative is just stay ill.
But the alternative is just stay ill.
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It’s why all the work you and others are doing to help understand who may be a stronger candidate for treatments is so important.
We also need an organized clinical trial pipeline so we can better understand response. Imagine harnessing all the data of who is trying which drug - and understand response, have biological testing, before and after treatment. If I could implore the community to do anything it’s to support research efforts of your choice at the level that is appropriate for you. Every small ounce of support matters.
And Jack - you are so right, only people living with these conditions understand what it’s like to try a new treatment and face this constellation of hope and fear. Thank you for sharing your voice for others.
We also need an organized clinical trial pipeline so we can better understand response. Imagine harnessing all the data of who is trying which drug - and understand response, have biological testing, before and after treatment. If I could implore the community to do anything it’s to support research efforts of your choice at the level that is appropriate for you. Every small ounce of support matters.
And Jack - you are so right, only people living with these conditions understand what it’s like to try a new treatment and face this constellation of hope and fear. Thank you for sharing your voice for others.
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At the Harvard/MIT Martinos Center, Dr. Mario Murakami and the VanElzakker lab are using ultrahigh-resolution 7T fMRI to understand how changes to cerebrospinal fluid (CSF) flow in people with Craniocervical Instability can produce a phenotype similar to that seen in ME/CFS and tions.
The brain relies on cerebrospinal fluid to carry out metabolic waste that builds up during normal physiological processes, acting as a “garbage disposal,” as explained by Murakami. Changes to healthy CSF flow may result in the buildup of these metabolites in the brain.
Said Murakami, “There is a compromised structure of CSF flow in CCI [patients] compared with healthy controls, which means that maybe this is part of the mechanisms which drive the symptoms—the brain fog, the pain, the fatigue, the autonomic dysfunction.”
The brain relies on cerebrospinal fluid to carry out metabolic waste that builds up during normal physiological processes, acting as a “garbage disposal,” as explained by Murakami. Changes to healthy CSF flow may result in the buildup of these metabolites in the brain.
Said Murakami, “There is a compromised structure of CSF flow in CCI [patients] compared with healthy controls, which means that maybe this is part of the mechanisms which drive the symptoms—the brain fog, the pain, the fatigue, the autonomic dysfunction.”
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2/ PolyBio is actively supporting this project using 7-Tesla fMRI in patients with infection-associated chronic disease (e.g. LongCovid and ME/CFS) to determine evidence of structural abnormalities in the dorsal brainstem and craniocervical junction; as well as cerebrospinal fluid flow problems, brain blood flow issues, intracranial pressure changes, and dysregulation of vagus nerve signaling.
polybio.org/projects/case-…
polybio.org/projects/case-…
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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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Thank you, @amyrochlin , for putting granular details here. I will add to this, that we are considering the CAPRIO model for menstrual disorders, esp Heavy Menstrual and endometriosis. We are creating a pilot project with Emm on using instrumented menstrual cups to see if there is correlation between the CAPRIO parameters and menstruation parameters. Exciting times when we look for overlap and synergies. We will slay some dragons, together.
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…
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@LindaGGriffith1 There are so many cross-indication clues we should be drawing from heavy menstrual bleeding and endometriosis, as you know. THANK YOU! Having your level of expertise focused on these connections is such a gift to the field.
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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 urge you to read this beautiful, powerful, heart-wrenching piece from Jessica Slice for @NYMag @TheCut as she discusses her family's experience with PANS.
Her daughter, transformed from a vibrant little girl to developing excruciating widespread pain and sudden, severe neurological symptoms.
PANS is one of the most demonstrative neuroimmune conditions across complex chronic illness.
For many young children, infection - in this young girl's case, strep infection - can trigger a seemingly overnight biological response, driving neurological symptoms.
Treatments are indeed possible: antibiotics, IVIG, and other immunomodulatory therapies.
Imagine helping these little ones (or even worse NOT helping them) and at the same time, being given clues to help the larger populations suffering from post-infectious, post-surgical, hormonally driven, post-concussive, neuroimmune conditions.
We must treat and study RIGHT NOW.
(PS, I know this is behind a paywall for many - that comes from the publication but if you can gain access, it's such a powerful read.)
Her daughter, transformed from a vibrant little girl to developing excruciating widespread pain and sudden, severe neurological symptoms.
PANS is one of the most demonstrative neuroimmune conditions across complex chronic illness.
For many young children, infection - in this young girl's case, strep infection - can trigger a seemingly overnight biological response, driving neurological symptoms.
Treatments are indeed possible: antibiotics, IVIG, and other immunomodulatory therapies.
Imagine helping these little ones (or even worse NOT helping them) and at the same time, being given clues to help the larger populations suffering from post-infectious, post-surgical, hormonally driven, post-concussive, neuroimmune conditions.
We must treat and study RIGHT NOW.
(PS, I know this is behind a paywall for many - that comes from the publication but if you can gain access, it's such a powerful read.)
Last fall, my daughter caught a cold and then, days later, lost her ability to function. She could no longer speak, walk, sleep, or eat. Her illness, PANS, is controversial to some in medicine, and the fight to treat it has overtaken our lives. thecut.com/article/pans-p…
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@amyrochlin @NYMag @TheCut Depends on how you define okay. Also depends on the immune status of the day. And the pollen count. And the... Well... You get it.
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@NurseGoodhart @NYMag @TheCut You're so right - "okay" doesn't happen w/o restored health. I do get it. Thinking of you so much.
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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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@amyrochlin @bhanlon15 How many of these patients are being investigated for spinal CSF leak?
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@KCMartinStone @bhanlon15 Such a good question. Many have but we need to really discern who may benefit from further testing.
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