I am so proud to introduce Metrodora, a national center of excellence designed to close the gap in the diagnosis, care, and cure of women with neuroimmune disorders. Read about the launch of this entirely new patient-centric model of care.
Delighted to have presented at
#DysConf2022
today!
#Neurogastroenterology
has so much more to offer individuals with
#POTS
#EDS
#MCAS
. Excited to share an example of a new technology that allows us to diagnose non-IgE mediated food allergies in real-time!
The good people at
@propublica
are putting together a project about health insurance denials. They are collecting stories. They came to the right corner of twitter for stories. You can tell yours at the link below.
#Neuroimmune
#IBS
#POTS
#EDS
#sjogrens
#LongCOVID
#MECFS
Have you ever wondered what your autonomic nervous system does?
Well ... it controls everything your body does that you never think about until something goes wrong and then it is all you think about!
We are excited to announce
@MetrodoraInst
has officially opened its doors!
As the first medical & research center dedicated to advancing care & accelerating cures for people living with
#neuroimmune
axis disorders, we are leading the next frontier of
#medicine
.
#MedTwitter
Neuroimmune disorders are disorders that involve both the nervous and immune systems. These include many conditions you may already know about, such as many cases of
#Dysautonomia
,
#Sjogrens
,
#POTS
, and many autoimmune and gastrointestinal disorders, including
#MotilityDisorders
What to do next when symptoms are suggestive of
#gastroparesis
but the gastric emptying study is "normal"? Below represents the power of performing the correct diagnostic study.
#SmartPill
, a wireless motility capsule was able to diagnose intestinal failure.
#GITwitter
Metrodora is already conducting research that is going to massively accelerate our understanding of Neuroimmune disorders and we will be open June 2022 to see patients! Can't wait to see you all there!
On my way to
#DysConf2023
! I am so excited to be in person again w/ the incredible
@Dysautonomia
community & look forward to meeting many new faces!
If you're in DC this weekend, please say hello!
Since we're all hard to recognize w/ a mask, just look for my pink kicks 👟👇
My research is focused on the pathophysiology and genetics of hEDS and POTS. I also collaborate with a very talented group of microbial ecologists to investigate the role of the gastrointestinal microbiome in health and disease.
#EDS
#
#Dysautonomia
#microbiome
Next week I will be presenting preliminary results from our multidisciplinary EDS clinic, as well as our whole genome sequencing project to identify genes associated with hEDS and POTS, at the Center for Genomic Medicine Symposium at the University of Utah.
#EDS
#Dysautonomia
Years ago, I was told by a patient that
#exercise
was a FOUR-letter word. It was funny the way she said it but in reality it was incredibly heart breaking. She had
#MECFS
and coming to some see me in clinic would destroy her for at least the next week. 💔
Metrodora Institute is a destination medical and research center focused on the care & cure of neuroimmune axis disorders.
@MetrodoraInst
Opening early 2023!
If you have symptoms impacting multiple body systems and most doctors are telling you that nothing is wrong because you look fine, STOP, and consider getting tested for an autonomic nervous system disorder! Receiving a proper diagnosis matters!
@MetrodoraInst
"We find that in nearly 75% of the cases where a disease afflicts primarily one gender, the funding pattern favors males, in that either the disease affects more women and is underfunded or the disease affects more men and is overfunded."
#MECFS
While I appreciate this sentiment, take a look at the data for non-profit and not for profit healthcare organizations, they are at times even worse! Healthcare is broken at every level. Healthcare is no longer about the care of a person.
I advise friends around the world not to do what the US has done, putting for-profit corporations in charge of health care.
It has been an absolute disaster.
April is
#IBSAwarenessMonth
...
#IBS
is a diagnosis based on clinical symptoms. It is not a diagnosis based on an understanding of the biological drivers of the symptoms. This means we miss the opportunity to diagnose and effectively treat the actual cause of the symptoms. 🧵
#LongCovid
&
#Autoimmunity
#CovidIsNotOver
"The idea that viruses can trigger autoimmunity in those with genetic predisposition through molecular mimicry has been simmering for a while."
@US_FDA
is hosting a public meeting on Patient-Focused Drug Development for
#LongCovid
!
With the major advances in the
#immunology
space we have so many options to test as a treatments for LongCOVID and other related conditions including autonomic disorders (
#POTS
) &
#MECFS
. 🧵
An exciting thing about this drug is that it is agnostic to the IgG antibody it targets and therefore shows promise for many IgG mediated autoimmune conditions. Trials are underway for many other conditions including
#Sjogrens
and
#POTS
.
📢 Patients: you are your own expert! No one knows your body better than you.
As physicians, we must listen to & partner w/ patients to make progress in identifying the biological mechanisms of
#MECFS
& other complex
#neuroimmune
disorders.
#MECFSAwarenessDay
#MillionsMissing
You are completely correct in your thinking. Like many post-infectious neuroimmune conditions (
#POTS
, GI motility disorders, and many autoimmune disorders)
#LongCovid
needs to be thought about and treated as an immunological disorder. We must do better!
#MedTwitter
#NeuroTwitter
Why is no one at least attempting to treat
#LongCovid
as an autoimmune condition? It feels that those with LC in the present have essentially been written off. I've many symptoms that point to autoimmunity yet am just expected to grin & bear it. This continued inaction is immoral
And while we are at it; functional gastrointestinal and functional neurological disorders are a constellation of symptoms, not a diagnosis! We must push the science forward to understand the biology! This advances care!
@MetrodoraInst
I am advocating for
#Neuroimmune
axis disorders which cover all of these conditions and so many more that disproportionately and more severely impact women!
We must move with URGENCY to accelerate our understanding of the biology of these devastating conditions. However, we must simultaneously leverage scientific knowledge and leading technology to radically improve clinical care, NOW!
#SystemsBiology
#ComparativeBiology
#POTS
#EDS
Proud to have signed this petition!
@MetrodoraInst
we have maintained our masking policy and our team is more than happy to continue this to protect our patients, themselves, and their families! We know that
#LongCOVID
is real and can be devastating!
#POTS
#MECFS
#IBS
As states throughout the U.S. begin to discontinue mandatory
#masking
in healthcare facilities, they place the most vulnerable populations at enormous risk, in the very places and by the very people, they go to for help. We are urging each State Department of Health, State Health
Thank you for highlighting these incredibly important points! This is certainly not a new phenomenon! I will also add that we can push even further with diagnostics which will help us better understand the biology which will guide us on how best to help our patients!
#Neuroimmune
Long COVID. It’s a new name coined in 2020.
However, it does NOT represent a new or unique outcome after someone has had an acute infection.
Before that name was created, we all existed and suffered.
1/
This study is from a young woman eventually also diagnosed with
#POTS
#EDS
#MCAS
who had been accused of faking her symptoms.
For reference normal ranges (this patient):
GET 2.5-4.5 hours (2 hours)
SBTT 2.5-6 hours (18.5 hours)
CTT 10-59 hours (>148 hours)
Today we’re building the system to solve this at
@MetrodoraInst
. Scientific & medical progress is not an engine that moves on its own. We need to
#collaborate
to improve the lives of millions of people living w/
#MECFS
& so many other debilitating conditions!
#MECFSAwarenessDay
As physicians it is our obligation to work to recognize & appropriately diagnose conditions early in the clinical course and prescribe our patients the best therapeutics!
#MedTwitter
#neurotwitter
#GITwitter
The
#DysConf2021
agenda is now available at ! We are so excited for this incredible lineup of speakers! If you register for this free conference, you'll receive an email with a detailed conference program and session links on Wed. Conference is July 15-18
We also have to remember that often times our patients have more than one of these contributing disorders! Think
#Microbiota
#Neuroimmune
axis disorders.
We need the data to optimize the treatment plan!
Day 1
#longCovid
clinical trial for
#POTS
The study is investigating whether a new medication, efgartigimod (Vyvgart), is effective at reducing/improving symptoms related to post-Covid POTS.
There are host genetic determinants contributing to the development of severe COVID-19 infection, which means there are very likely genetic determinants for
#LongCovid
,
#MECFS
,
#POTS
, and other
#Neuroimmune
axis disorders.
Honored to have hosted
@DouglasAdlerMD
for a tour of Metrodora Institute last week! Here we are standing in the Center for Advanced Interventions at
@MetrodoraInst
Opening early 2023! We are seeking innovative & collaborative gastroenterologists!
#GITwitter
@AmCollegeGastro
If a heavily contagious airborne disease—that causes a severe viral respiratory infection—isn’t something that we address on a Federal level, then what the f*ck actually warrants a comprehensive Federal response?
The
@MetrodoraInst
team traveled to Germany to train on the
#Cellvizio
confocal laser endomicroscopy system (CLE). This technology will revolutionize our ability to detect alterations in intestinal permeability and diagnose
#FoodAllergy
in realtime.
After
#COVID
, individuals with a preexisting
#autoimmune
condition, have a 23% increased risk of developing another autoimmune disorder.
@argenxglobal
developed Efgartigimod a neonatal Fc receptor antagonist that reduces circulating levels of IgG to treat autoimmune diseases.
Yes there is a trial for
#LongCovid
#POTS
!
@MetrodoraInst
is proud to be a clinical trial site for this study, along with:
-Johns Hopkins Medicine
-Stanford Movement Disorder Center
-Northshore University HealthSystem
Great meeting
@AANMember
! Any other neurogastroenterologists here? The gastrointestinal tract is the largest interface of the nervous and immune systems. We should all be working together!
I am really proud of what we are building
@MetrodoraInst
! Together we are advancing care & accelerating cures for neuroimmune axis disorders all the while creating amazing career opportunities for clinicians who truly want to innovate and collaborate!
Complex medical disorders can affect multiple organ systems, making them very difficult to treat in our current siloed medical system. Here is our new review of disorders at the interface of neurology, immunology, and gastroenterology.
#EDS
#Dysautonomia
Another fantastic example of why we need true
#precision
medicine & strong partnerships with our patients! This is something only practicing physician-scientists can do!
The potential this technology holds to advance our understanding of host-microbe interactions within the human gastrointestinal tract is extraordinary! This work will have huge implications for advancing knowledge of microbiota-neuroimmune axis disorders!
@NIH_ORWH
@IFFGD
On Monday, Dr. Heidi Smith,
@BiofilmFirst
microscopy manager, & I placed an order for a
@LeicaMicro
SP8 with Stimulated Raman option. The 2 of us raised $1.15M for this. Once installed, this instrument will only be the 3rd commercial Stimulated Raman scope at a US university
I was awarded a grant from the University of Utah Center for Genomic Medicine to identify genetic variants associated with hEDS and POTS using transcriptomics. I'm very excited to compare this to our recent whole genome sequencing results.
#EDS
#POTS
#Dysautonomia
We are also seeing increased rates of
#mastcell
mediated disorders, let’s target these conditions specifically.
@EscientP
is developing small molecule antagonists of Mas-related G protein-coupled receptor X2 (MRGPRX2) for the treatment of a variety of mast cell-mediated diseases.
The neurological complications of
#EDS
,
#POTS
greatly impact gastrointestinal function. The gastrointestinal system has its own nervous system and is heavily innervated by the autonomic nervous system. The GI tract is the largest interface for neurological + immune interactions.
They can also help with
#fatigue
and components of cognitive impairment (The term
#brainfog
does not do this justice!) by addressing craniocervical, visual, and proprioceptive dysfunction!
#neurotwitter
For those with
#LongCovid
#POTS
,
@argenxglobal
is testing if depleting circulating autoantibodies will help with recovery. This same therapy has already been FDA approved to treat another autoimmune disease.
"Anti-inflammatory drugs & drugs that suppress the function of substances released by microglia could be a treatment for
#LongCovid
" commented research team member Yoshitaka Kase, a specially appointed lecturer in neuroscience at Keio University.
I am delighted to be speaking as part of the Lesser Studied Pathologies Section organized by research scientist Beth Pollack. The series is FREE, however, registration is required, link below.
In any patient presenting with symptoms after any immune activating event (infection,
#COVID
, surgery, concussion, etc.) or with
#LongCovid
we need to be testing for these autoimmune conditions! And we need to be leveraging immune modulators for these devastating illnesses!
If you want to make real change and create an economy that works for all, you know what you need?
You need to take on Wall Street, the drug companies, the insurance companies, and the fossil fuel industry.
You don’t take campaign contributions from them.
@fidjissimo
, a true thought leader in health creation, highlighted the importance of food as a determinant of health. Leading the way by creating healthcare and food industry partnerships to help us achieve or best life!
#HLTH2022
Congratulations to Dr. Sheila Crowe, an amazing
#mentor
, scientific collaborator & dear friend, who was awarded the
@AmerGastroAssn
Julius Friedenwald Medal🥇–
#AGA
's highest honor!
I am so proud of what she has achieved over her inspiring career!
#DDW2023
#GITwitter
#WomeninGI
Gastrointestinal motility testing only tests motility, there is so much more to gastrointestinal function. We can and must do better to investigate symptoms especially in patients with known neurological and / or immunological disorders.
@AASAutonomic
@AANMember
@Dysautonomia
Neuroimmune axis disorders are conditions impacting tens of millions in the US. These conditions affect the nervous, immune, endocrine, and gastrointestinal systems and require coordinated & innovative care.
We need more studies interrogating immune system dysfunction in
#POTS
#MECFS
#LongCovid
because we need to find actual therapies that make people better! Many potential immune therapies are already FDA approved for other conditions that could also be leveraged in this space!