Neurologist/Researcher, Director of #Dysautonomia Clinic, Clinical Associate Professor @Jacobs_Med_UB. Trained @MayoClinic. Tweets🚫med advice. Opinions my own.
Buffalo, NY
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I am incredibly honored to have been invited to talk about #LongCovid and #Dysautonomia by the brilliant @EricTopol on his Ground Truths podcast. It's amazing to achieve this despite all of the obstacles in my life. 🙏🧠👩🔬
@Jacobs_Med_UB @AANmember @DrABrashear #BrainHealth
Pearls on #dysautonomia, #LongCovid, #POTS from a leading expert on the front lines, Dr. Svetlana Blitshteyn
@dysclinic
In the new Ground Truths (link in profile)
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🧠 Every day I see patients with issues that have no data and no research of any kind. There are so many opportunities to study these topics and make amazing discoveries, but shortage of researchers interested in these disorders AND limited funding are huge barriers to scientific advancements. 🔬
#BrainHealth #Dysautonomia #POTS #LongCOVID #research
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Patients with complex medical conditions often develop emotional distress, which may include anxiety and depression. It's not because these people suddenly acquired a psychiatric disorder on top of the medical condition: it's because people are reacting to hardship and burden caused by the medical condition.
Human emotional distress is ubiquitous. Psychiatric disorder is pretty rare. Conflating them causes big trouble.
30 yrs ago, wild fad psych diagnosis was promoted by Big Pharma/mostly done by the MDs.
Internet is now to blame & the loose self labelling is done by the patients.
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Even before AI, the system of producing papers for the sake of getting more publications was set up to reward quantity over quality. The system also rewards researchers over clinicians, which is a huge downside for #PatientCare.
A professor published 200+ papers and as many as 14 books this year. I'll leave it there.
gift link wapo.st/4d3vD7n
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In today's first: received "Revise and resubmit" decision WITHOUT any comments from the reviewers. This is after I had already extensively revised and resubmitted previously. Ironically, this is on an INVITED paper too.
Getting tired of this...😒
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🏆 Here is a beautiful study of 17 patients who presented to the ER with abnormal movements and other neurologic problems and were misdiagnosed with #FND. It turned out that... all 17 patients had #dysautonomia and most improved with dysautonomia-targeted treatment!
🎉 The authors conclude that patients presenting with abnormal movements should be evaluate for dysautonomia and not be mislabeled with FND.
P.S. I was not involved in this study or its publication, I promise, but my experience directly parallels that of the authors'. 😂
frontiersin.org/journals/neu…
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👏 Shoutout to our cardiology friends and colleagues @FudimMarat et al. for emphasizing that #POTS is not #FND, psychosomatic or medically unexplained! 🫀🧠
Read their new paper in @JACCJournals here.
jacc.org/doi/10.1016/j.jacc.…
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❓ This question always comes up, even from my colleagues who specialize in #POTS and #dysautonomia: Why do you recommend such an extensive workup for patients?
✔️ The short answer is: So that I don't miss things!
🩺 Example: Patient today with #POTS and #migraine and, surprisingly, no GI symptoms at all. My extensive workup revealed 2 positive antibodies for celiac disease despite the patient being on gluten-free diet for years!
‼️ Take-home message: If you don't look for it, you won't find it.
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Great example how existing diagnostic criteria set by a society does not reflect real-world clinical practice. But there are other very important points in this division:
👩🔬 Science is a democracy!
🩺 Diagnostic criteria may diverge.
🤝 Achieving consensus among societies, clinicians on the ground and researchers is hard.
➖ There needs to be a fine line between underdiagnosis and overdiagnosis, but patients need to have healthcare access, whether they under- or over-diagnosed.
👍 While disagreements are viewed as a negative, it's actually a positive in science because it brings people with diverse opinions and experiences together and forces them to communicate and negotiate.
💲 If one society/organization sets the rules, it can backfire -- always look at special interests and who pays them. Unfunded means less bias.
medscape.com/viewarticle/mas…
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Intelligent people understand that there could 10 different studies on the same topic, and it's good for the field. Ego-driven people look at 10 different studies on the same topic and think that only their study is good, but the other 9 are bad. Be intelligent! 😊
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🤔 We have been seeing the development of autoimmune diseases, some of which are associated with elevated clotting risk, in real time. Those scientists with open minds and critical thinking will be the ones documenting the pathophysiology.
A few days ago, I learned that @NatGeo quoted two (!) of my studies on autoimmunity and immunotherapies in #POTS and #LongCOVID in their recent article. I am honored! The study on autoimmunity in POTS is from over 10 years ago, but is clearly impactful.
nationalgeographic.com/healt…
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A few days ago, I learned that @NatGeo quoted two (!) of my studies on autoimmunity and immunotherapies in #POTS and #LongCOVID in their recent article. I am honored! The study on autoimmunity in POTS is from over 10 years ago, but is clearly impactful.
nationalgeographic.com/healt…
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I think this link gives you free access to the article:
archive.li/dFeWi
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I am back to my account! 🎉 My account was hacked for the past few days. No, I didn't buy a Porsche using cryptocurrency, which is what the hackers posted from my account. 😂 Thanks to everyone who reached out and @X support team for getting me back here. 🙏
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My patients often report improvement with GLP-1 RAs. Today one patient with #dysautonomia/#MCAS told me she is back to running after starting GLP-1 RA. 🏃♀️
📢 Our paper on post-COVID vaccination dysautonomia improving after GLP-1 RA was just published!
tandfonline.com/doi/full/10.…
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1/2 We’re concerned by recent media coverage of #PoTS & other chronic conditions, particularly the way people’s experiences are being dismissed or reduced to a trend.
PoTS is a real condition that can have a profound impact on everyday life.
#ChronicIllness #InvisibleIllness
ALT We strongly reject the implication that people living with PoTS or other chronic health conditions are following a trend. Behind every diagnosis is a person. Someone experiencing symptoms that can profoundly affect their ability to work, study, care for their family, socialise and live their everyday life. For many, reaching a diagnosis follows years of unexplained symptoms, uncertainty and being misunderstood. We will continue to speak up when the experiences of people living with chronic health conditions are dismissed, trivialised or reduced to a media narrative and we are now considering what action we need to take. We are proud to be working alongside other charities that share this opinion. To our community: we see you, we hear you and we respect you. You are not a trend. You are not a headline. You are a person living with a real condition. You deserve to be treated with dignity, compassion and respect and to be able to access healthcare. We will continue to campaign!
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I guess I should be glad that this physician, Michael Scoma, MD is rehashing my paper on #LongCOVID, #POTS and #MECFS as neuroimmune disorders. Of course citation of my paper is missing AND, conveniently, he blocked me! I don't even know who he is.
tandfonline.com/doi/full/10.…
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Out-of-the-box thinking is how we improve healthcare. I would love to see universal screening for diabetes type 1 in children. Dr. Robert Guthrie from @Jacobs_Med_UB developed newborn screening for phenylketonuria (PKU) in 1958 - now a universal screening test!
Most children who develop Type 1, autoimmune diabetes have no family history. With current and emerging disease-modifying interventions, this could be preventable. Why aren't all children age 2-4 years getting screened for islet cell autoantibodies as this new international expert consensus recommends?
link.springer.com/article/10… @DiabetologiaJnl
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Thanks for citing our paper on neuropsychiatric manifestations of MCAS. I don't see the reference so here it is:
mdpi.com/2075-4426/13/11/156…
When your neuropsychiatric symptoms respond to MCAS treatment or POTS treatment is it "paychogenic?" Or is it MCAS? Slide of responses of various neuropsychiatric symptoms responding to simple antihistamines to follow. Info from Stanford community MECFS conference today.
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9/11... On September 10, 2001, I was looking up at the Twin Towers on my way back from NYC to Buffalo and thinking that next time I am in NYC, I should take the elevator to the top floor to see the city from the top of the building. The next morning in Buffalo on 9/11, I went to have a meeting with my research advisor as I was a medical student at @Jacobs_Med_UB starting a neurology research elective - the same class that I teach now to medical students.
While waiting in the waiting room of a large neurology practice for my research advisor to come out, I saw the plane hitting the tower on TV. I thought this was an accident, then a 2nd plane hit, and then shortly after that, the towers collapsed. A horrific terrorist attack on our country! May the memory of people who perished on 9/11 be a blessing. G-d bless America. 🇺🇲
I remember 9/11 like it was yesterday. I was in med school and a student go on the mic between lectures to tell us one of the WTC towers had been hit by a plane. The professor was like, “Come on, come on, life moves on.”
How wrong he was.
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