Vijay Iyer PhD
@vijayiyer312
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Patient advocating science for #mecfs & #dysautonomia (incl via #longcovid & #postvac ).👷🏾♂️Support #neuroscience users & use cases of @MATLAB . Tweets my own.
Boston, MA
Joined December 2017
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@NCSHospital
Embarrassing drivel. Are you a hospital or a propaganda team? There are top athletes getting Long Covid. It's clearly not about getting more exercise.
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Some media outlets still know how to write a clear headline that stands the test of
@TIME
#longcovid
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Clear headline about a clear problem:
#pots
as a leading form of chronic
#longcovid
.
Lots of finger-pointing lately (CDC, pharma, FDA, etc).
Hardly anybody asks: how & why did docs miss or sideline an obvious condition (tachycardia!) for so long?
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@jonfavs
*Chronic* Long Covid (vs something transient as you had) is actually affecting the young & seemingly healthy most. So I hope you will be clearer on that important point going forward. But I agree that approach to advocacy is not effective. Chronically ill folk are frustrated.
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@iamharaldur
@elonmusk
Thought for
@elonmusk
: if tweeting is a clear-cut sign that someone has full cognitive/physical capacity, then Mars seems out of reach for humanity. Time to pivot?
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@LauraLoomer
It's at least possible you have
#longcovid
, seeing as loss of smell/taste rates as the most distinctive symptom in the first-pass working definition from the NIH RECOVER effort.
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Now make that 3 techniques showing cerebral hypoperfusion in
#longcovid
:
1. Transcranial Doppler
2. Near Infrared Spectroscopy (NIRS)
3. Arterial Spin Labeling (ASL)
#neuroimaging
@dysautonomia
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@iamharaldur
@elonmusk
Kudos
@iamharaldur
for moving past the disability smear to have a real discussion about your work, value, capabilities, limitations, & such.
These days,
#Longcovid
patients are hearing much presumptuous criticism like Elon leveled today. Hoping tomorrow marks a new beginning.
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Jonathan Toews will use a 'radical rest' strategy to try to recover fully from
#mecfs
(what CIRS is imo) arising via
#longcovid
.
Rooting for his success! One way or another, he may have as big an impact on medicine as on the ice.
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...his team studied 160 chronic fatigue patients, and found that when they exercised, they experienced many of the same blood vessel problems observed in long Covid patients, while control subjects did not. “We’re essentially finding the exact same thing”
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Post-vax
@dysautonomia
is too important a clue to lose to taboo. Glad my former employer
@UTHealth
(among others) is sticking to their guns & publishing these cases. It may hold keys to understanding & resolving chronic varieties of
#longcovid
&
#mecfs
.
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@ImmunoFever
Another moment to say that I'm deeply disappointed
@DrBiden
has put a *psychologist* in charge of the new
@WhiteHouse
#WomensHealth
#research
initiative.
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Good article about low-dose naltrexone for
#mecfs
& now
#longcovid
, touching on work by Younger & Gradisnik-Marshall & the patient community insights of
@exceedhergrasp1
.
Note: naltrexone has little effect on opioid receptors at these low doses.
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@JanetDafoe
@MrkStdngr
This is a kind offer from the Davis/Dafoe family & may be of true help
@MrkStdngr
. If you f/u w Janet as offered, one idea might be to get a short letter from Ron (which prob should mention his credentials). Stuff on (digital) paper can change attitudes/outcomes.
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@Salon
Great article
@phil_fink
! Note that neurodegeneration does not need to ascend to the upper reaches of the brain to account for many of the
@dysautonomia
symptoms seen *already* in chronic
#longcovid
patients. Neuropathy in brainstem/ganglia/etc v much possibilities.
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@MrkStdngr
There's an early ME doctor who actually tracked that patients got somewhat happier or less frustrated over time. The least happy or most frustrated period is the earliest: trying to live a normal life when the body just can't. Don't remember his name off the top of my head...
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@organichemusic
Please rest rest rest as much as possible. This level of bottom can & does pass in some cases. Happened to me & others on this thread.
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The
@CedarsSinai
team has just followed up on their 2022
#longvax
finding: significant association of vaccine to
#POTS
.
Top conclusion of new study: most had pre-existing conditions.
Unsaid: most were 🦓 conditions!
Medicine must change its culture.
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@EricTopol
@CDCgov
@CDCMMWR
I thank
@PeterHotez
for speaking up recently for the immunocompromised, including some with elevated risks upon vaccination. I hope he can add his voice in asking the
@CDCgov
for a more thoughtful, caring, and aspirational action plan.
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@SaraAna66550269
Maybe tell them they should cut their salary in half because they apparently skipped half the nervous system in neurology residency😏
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First step to solving a problem is admitting to having one. Good to see this refreshing honesty from doctors on the front lines of
#longcovid
.
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The
#mecfs
research community is homing in on what's going on at the exact time of post-exertional malaise (e.g., exercise response).
#longcovid
folks: of likely interest!
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This past week we've seen histopathology results for
#longcovid
literally from head to toe. Same results up and down: vasculopathy.
"Biopsy of
#LongCovid
toe... demonstrating a) superficial fibrin thrombi occluding capillaries in dermal papillae b) endothelial swelling w/o vasculitis"
Here, as always with LongCovid toe; neg PCR/antibodies yet clear association with SARS-CoV-2 exposure
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"Until ME/CFS came along, few people had considered the possibility that exercise could be...fundamentally harmful"
#MECFS
#LongCovid
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Agreed. Same timeline for me in fact.
Imho this means
#mecfs
criteria are too stringent. There are likely many very mild cases out there who need a better warning about their condition.
A word of warning… I started getting sick in 2015. I did not meet diagnostic criteria (PEM) for ME/CFS until mid 2017 and in certain aspects possibly even early 2019. Whatever triggers ME/CFS can be set in motion long ahead of being obvious. Untreated abnormalities accumulate
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The ME in
#mecfs
stands for myalgic encephalomyelitis.
With this 7T
#mri
finding, ME might somewhat more precisely stand for "mesencephalitis", i.e. inflammation of the mesencephalon (which is 1 part of brainstem, found to be enlarged as a whole).
(included ME via
#longcovid
!)
.
@MenziesHealth
have used the world's strongest MRI to investigate the impacts of Long COVID and ME/CFS on the brain. They found the brainstem was larger in patients with ME/CFS & Long COVID than those who didn't have the same ailments.
@TraceySpicer
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Lately I thought real
#journalism
had died*.
Find credible sources, dig into the backstory, convey something new & interesting. Nice work here
@RollingStone
!
LDN is not a panacea for
#mecfs
or
#fibromyalgia
(including via
#longcovid
). But it moves the
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The cardinal symptom of
#mecfs
: post-exertional malaise.
The cardinal sign? Likely cerebral hypoperfusion, per 14+ studies identified by
@RenzPolster
.
Sure enough: orthostatic cerebral hypoperfusion appears robustly in
#longcovid
patients.
#postvaxbio
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@awgaffney
It's the opposite of dogma. Scientists are investigating multiple different theories (viral, immune, neuropathy, etc) for the multiple phenomena (PEM, ⬇️ orthostatic🩸, ⬆️💓, etc) before them. You're the one that keeps beating drum of a single explanation for all effects.
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Dusting off a 1974 Nobel prize (anti-idiotype antibodies) may be the key to a medical breakthrough for
#longcovid
(and probably
#mecfs
)
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@eve_faber
@ravenscimaven
In
#mecfs
(and likely
#longcovid
), paying attention to one's body often doesn't work so well. Post-exertional malaise often comes with a delay, i.e. there's no immediate feedback one is over-doing it. Connecting dots may seem like "pessimism", but it helps limit progression.
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@meghanor
@PutrinoLab
Fully agree
@PutrinoLab
. That's been getting lost in ongoing commentary that not all the 20% is the "serious" kind (e.g. from
@ezraklein
). The flipside is: not all the serious kind seems immediately serious. I've learned hard way: from 10s off my mile time to 90% bedbound.
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@SethMacFarlane
Thank you Seth. Definitely no joke. Unfortunately the budget for LC-related research & research-oriented care sometimes seems like a joke. Your voice may help make a difference, thank you again.
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@harunijaz
@firstphdchat
@PhDVoice
Nobody graduates until they've corrected a prior correction from the same supervisor 😏
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@Silas33
It's not just at the medical specialty level, but also at the research funding level. With the exception of National Cancer Institute, NIH institutes largely break down by body part, leaving multi-system disorders without a home base.
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@awgaffney
Study did not assess for post-exertional symptom exacerbation (PESE), the hallmark of
#mecfs
aka the one defined condition some
#longcovid
patients fall into. That's the subset expected to have measurable differences (these or otherwise). Studies w/o subsets aren't worth so much.
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@MattWalshBlog
Umm, you realize several hospitals have refused to treat severe cases, to the point of starving patients?
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A moment to say I'm deeply disappointed
@DrBiden
has put a *psychologist* in charge of the new
#WomensHealth
#research
initiative.
I think the
@NIHDirector
, the
@AmerMedicalAssn
, & women across the country should be too.
Selma Blair Says Her multiple sclerosis was misdiagnosed or dismissed as girl stuff for years. She told Meet the Press on Sunday that “older male doctors who really probably did not know the intricacies of a girl’ got in the way of a diagnosis.
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Promising story(s) on
#mecfs
&
#longcovid
from
@BhupeshPrusty
. The video 🎞️ was intriguing, looking forward to reading the details in the preprint 📃!
Lots of interesting links of the chain described:
🔗'antibody induction' screen, finding
🔗HHV-associated antibodies, capable
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Exactly this! After one year of being 90% bedbound, I instantly had a quasi-normal week when starting this same medication.
Not sure if it's true but I can see why some
#mecfs
docs landed on a hibernation hypothesis.
My accidental extra Midodrine experiment is ongoing. Took extra this morning and have felt good. It’s amazing how our tired floppy bodies can suddenly feel like sitting up/standing after so long demanding horizontalness. I’m not deconditioned or scared of activity.
#FuckThePsychs
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Concrete finding of metabolic reprogramming. Of possible relevance for
#mecfs
and chronic
#longcovid
.
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The
#mecfs
skeptic team shares their annual roundup of the past year's research. While I am more optimistic, their skeptic stance is well-founded after years with ME.
Strong recommend to newer "zebras" with syndromic
#longcovid
(ME,
#pots
, etc).
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@EricTopol
@PNASNews
@UTHealth_SBMI
FYI
@ChrisCuomo
&
@drwilliamli
: not only do we know that viruses can cause neurodegenerative disorders (as Dr. Li mentioned on the recent segment), we're starting to know which specifically for which.
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@awgaffney
Can't parse your political reasoning. But for me it's quite straightforward: does a minority which is (for some reason TBD) distinctively vulnerable to virus & vax have rights & value? Your answer seems to be no, that we're collateral damage. Sorry if we push back!
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"This study uses
#mri
to support our hypothesis that
#MECFS
sufferers have a disorder of muscular ion transport as the cause of PEM and muscular fatigue."
Diese Studie belegt mittels MRT unsere Hypothese dass MECFS Erkrankte eine Störung des muskulären Ionentransports haben als Ursache von PEM und muskulärer Fatigue.
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@winstoncb
@richardvallee
@TalmadgeKing
@Bob_Wachter
@CatherineRLucey
@UCPrezDrake
@UCSF
@UCSFHospitals
I think
@UCSF
needs to terminate these physicians or give back their LINC funding. There's academic freedom & all, but if it's so obvious LC is a sham that
@VinayPrasad
can mock it openly without repercussions, then accepting biomedical LC funding is a waste of taxpayer money.
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@cstroeckw
With growing awareness of similarities between
#postvac
syndrome & syndromic
#longcovid
, that adds another cohort, and timeliness which may be attractive to the PR agency. Hear 👇🏽from a former MP and former
@ama_president
.
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83
@DrGrahamLJ
Sometimes it's X+1 or X+2 months ago. Delayed onset of symptoms is part of the
#longcovid
puzzle, as mentioned briefly by Dr. Koroshetz (
@NINDSdirector
) on
@FaceTheNation
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@LongCovidKiwi
Interesting that they chose POTS. They are claiming folks can fabricate or self-induce tachycardia??
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For
#LongCovidAwarenessDay
, I highly recommend viewing
@Not_Recovered
& their German origins at
@NichtGenesen
.
In the NotRecovered style, here's a short view of myself:
Vijay
Age 46
USA
Scientific Software Specialist
#mecfs
(since 2015)
#postvac
(since 2021)
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@sfmnemonic
@MECFSNews
Ill-posed question in my view. A subset of
#longcovid
*is*
#mecfs
. Why would the diagnostic criteria of
#mecfs
change just because we happen to know the triggering pathogen?
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@ElianaUku
Relatedly, the cards in Epic (leading EHR system) have just two states (new, resolved). Needs a more complex state model! Like things that are not resolved but are well-managed or not that bothersome. Should be set up more like a kanban board.
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@ahandvanish
If I understand correctly: nearly all who have symptoms at 12 weeks still have them at 6 months.
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@42soho
3. POTS and ME (PEM) didn't have dedicated ICD codes until Oct 2022 in US (likely similar in other countries).
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@CDCDirector
Irresponsible to cast decisions as clear-cut when we have POTS data showing near-equal risks (hazard ratio increases) from both vax & virus, and prevalence rates (irrespective of cause) ~0.1-0.5%.
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"Patient reports and a BBC Radio 4 programme in the 1990s suggested that routine inoculation can trigger onset of full-blown ME in those genetically predisposed, or who already have it in an incipient form."
#PostVac
#MECFS
#LongCovid
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@PutrinoLab
Thanks for taking this big issue head on! Would add that cerebral hypoperfusion has been found now in two groups (Dr. Visser, Dr. Novak) across both conditions (
#LongCovid
&
#MECFS
. Also: the lymphatic system extends into the 🧠. Not sure if docs know this 2015 discovery yet?
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It's likely close to 1 in 1000, possibly 1 in 10k. Neither of which is that rare.
But for now: I'm glad
@bruce_y_lee
&
@Forbes
help to tell the story of
#postvac
syndrome.
It's a key clue for unraveling chronic
#longcovid
(which is less rare).
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I fear chronic
#postvac
patients are being mostly exploited by anti-vaxxers who then spin misinformation (downplaying that virus often leads to *very same* outcomes). But until mainstream medicine duly recognizes such rare but real outcomes, it's at least partly on them.
#vaccineinjured
: YOU MATTER
Find support groups:
@React19org
@ukcvfamily
@irish_cv_clan
@scottish_vig
@CWTAIC
@RealNotRare
#vaccineinjuries
#postvac
#postvacsyndrome
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@Dakota_150
Thank you for sharing. I feel
@euroweeklynews
should feel almost a bit culpable for this tragedy. It doesn't take AGI to realize Emilia is describing
#POTS
. The fact that POTS is not mentioned in this article speaks to the silence & isolation Emilia must have felt.
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@brianvastag
For those not connecting the dots, small fiber neuropathy has been shown at elevated prevalence in
#mecfs
(and thus likely also in
#LongCovid
)
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@ibrake4ants
@gregggonsalves
@KatherineJWu
@DLeonhardt
@NateSilver538
should stick to what he cares about -- sports! And then he might get curious why high rates of athletes (virtually all with mild cases) don't return to baseline performance.
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RIP Ron Tompkins. Only "met" him recently, but I already know: when
#mecfs
and
#longcovid
are cured, he will deserve key credit.
@gezmedinger
@OpenMedF
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@ahandvanish
C19 vax + PEM post-exercise (I was very mild & not yet dx) drove sharp baseline lowering in my case. As if the vax somehow made the post-exercise PEM baseline lowering rather than 'just' a symptom.
Will dig up a thread with several others in similar boat.
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@ManvBrain
@zeynep
Doubtful you care, but fwiw: word "crash" has gotten overloaded in usage. Sometimes it's PEM symptom that resolves (until next time). Sometimes it's *baseline-lowering* & this can be sharp/surprising. Vividly remember my last run: faster than you!, fast downfall for me.
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@KunstJonas
Good start as others say. It's missing exertional intolerance or post exertional malaise, i.e. the cardinal symptom of the
#mecfs
which can result from
#lomgcovid
. The lack of a fully identified organ to blame shouldn't keep important symptoms from the list.
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@edyong209
🙏🏼
@edyong209
for shedding light on this topic!
Sharing here an earlier🧵by
@PutrinoLab
on varieties of fatigue in LC/ME. In my n=1 experience, these drive different flavors of cognitive impairment. Another reason why brain fog has been hard to convey.
2) Fatigue from
#dysautonomia
: Often will feel like someone literally flipped a switch and now you're fighting to remain conscious.
3) Fatigue from oxidative stress/mitochondrial dysfunction: You feel like you're trapped in...acidic jelly - hard to move, sluggish, burning (6/n)
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@meme2075
@Rpshahmemorial1
Absolutely. Pattern seems to be that folks with a rare hidden vulnerability end up as vulnerable to both, but the virus more so. Here is work covering both pathways for the complication more common in females.
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9
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@BiologistBunk
Will add to the record that my sharp
#postvac
syndrome followed a similar pattern often described in
#longcovid
: recover from acute illness (post-vax 'flu-like' bout), resume strenuous exercise/activities, relapse into chronic illness.
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Seriously true! Satire that makes you 😢
Prime example is
#POTS
: tachycardia upon standing. Tachycardia = 100bpm (or 30bpm elevation). Mostly affects women --> blaring 🚨 ignored for too long by doctors 🙄
Time to end this! POTS = top debilitating form of
#longcovid
.
Woman Puts Off Going To Doctor Until Disease Bad Enough For Him To Believe Her
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#postvac
syndrome is a big problem. It refers to chronic illness following a vax (e.g. C19), with outcomes akin to
#longcovid
.
Anti-vax muckrakers have no shame. Here they steal images from a serious
#mecfs
/
#longcovid
/
#postvac
demonstration to make silly claims.
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8
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Interesting wrt cognitive dysfunction in
#longcovid
.
Brings to mind the growing use of LDN (a TLR4 antagonist) for
#mecfs
, as recently covered by
@rollingstone
.
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@dis_joint_ed
@NateB_Panic
Agreed, endurance athletes seem most affected, especially ones with high muscular output (cycling, rowing).
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My thoughts exactly
@PeterHotez
. Surely the
@AllenInstitute
(
#immunology
!
#neuroscience
!) should hear this. Right place, right time.
If I were starting over in science I would give serious thought to working on this infection-neuroscience axis through systems biology and other approaches. It would teach us not only about longCovid but things like CFS, fibromyalgia, other post-infectious sequelae
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@jonfavs
@loscharlos
@bendreyfuss
While I too smh at the approach of the advocates involved with this hashtag, that's from a patient perspective wishing for more effective approaches. But for you: why the punching down?!
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@denise_dewald
@andrew_croxford
Great point. I'm still trying to get a handle on what the AIDS epidemic looked like in the 70s when HIV started to spread. What did the data say at that time?! Early AIDS researchers say they saw clear signs of illness then, but it didn't register for most people till the 80s.
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Heartbreaking but familiar story of a sharp
#mecfs
decline (via
#longcovid
).
@Forbes
documented the sharp rise of Dianna during her 20s ("30 under 30"). I hope they will take equal notice of her sharp decline, which is a story of not just tens but
#millionsmissing
worldwide.
My condition has declined fast. It’s clear I have severe
#MECFS
I can’t eat solid foods, or feed myself.
I have moderate pain almost 24/7.
I have trouble breathing and lose my ability to stay fully conscious when my symptoms intensify.
I cannot leave the bed.
I am scared 😔
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@ZacharyGrinDPT
@awgaffney
Give me a break. It's hard to get a POTS diagnosis even with persistent tachycardia. MCAS is specifically about mast cell responses other than anaphylaxis; if you don't believe in it fine, but don't subvert the definition to try and sound smart.
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@ahandvanish
@Dysautonomia
has been working to help disseminate the core technology used for these studies (transcranial Doppler). Perhaps an opportunity for collaboration with
@patientled
.
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@NeuroWeaverGSU
@VirusesImmunity
@PutrinoLab
From ME history, I get the sense it's more the whole HHV gang (or a bunch of bad apples) rather than this lone mastermind. But either way, look forward to rounding them up!
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Tantalizing report-out from Dr. Fudim at Hopkins re a new wearable CBF device.
Possible game-changer for
#mecfs
,
@dysautonomia
, & chronic
#longcovid
varieties.
My best guess is this is based on
#NIRS
technology.
We tested the feasibility of a novel continuous monitoring of external carotid blood flow as a proxy for CBF using a novel in-ear device. An in-ear wearable device designed to measure blood flow and more.
@HopkinsMedicine
@VUMC_heart
Tandri, Tripathi
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It's
#LongCovidAwarenessDay
.
Many folks w/
#longcovid
or
#postvac
have realized: their chronic outcomes (e.g.
#pots
,
#mecfs
) are the same, i.e. these outcomes need not be trigger-specific.
This insight may help societies to heal from strife & patients to find a medical cure.
1
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@NHLBlackhawks
Thank you for sharing. Wishing Jonathan a recovery on whatever timetable the biology demands.
Adding this to the growing number of
#athletelongcovidstories
like his & mine (way more amateur!).
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Do you have BOTH scientific training AND lived experience w/
#mecfs
(or related*)?
I call on you to make your voice heard for the NIH
Research Roadmap for ME/CFS👇🏽.
You can contribute:
💡Ideas
💬Comments
👏🏽Votes
The IdeaScale portal is open until March 8.
*
#longcovid
#pots
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@jenbrea
Even though POTS is treated almost as poorly. Given its clear & cheaply obtainable signs, sometimes I think it should be a focal point of advocacy. PEM *is* hard to explain, while POTS is a clear embarrassment for medicine: clinicians mostly ignoring a sign anyone could measure.
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As-always, a thought-provoking post from Christoph 👇🏽. Re the perverse harmful effects of psychologizing
#mecfs
(including via
#longcovid
).
My ME story is a variation on the theme...🧵
The wildest thing about all of this, and I still fail to comprehend it, is that 95% of people thought I would make all that shit up. Not only that, but I would do so without knowing it myself. Eventually, I believed this narrative and worked my body into very severe
#MECFS
.
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@Silas33
@Independent
@USNavy
It's called
#Dysautonomia
Some neurologists can help or try to.
No allergists can yet!
(though: cannot rule out mast cell involvement in triggering some cases of autonomic dysfunction)
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@AlexBerenson
"I feel like I want to pass out" sounds a lot like autonomic failure, which sometimes includes orthostatic tachycardia (prevalence of this form is ~0.1-0.5% in the population, regardless of trigger, per this first-ever large-scale data on it).
FYI your snide comment meant to
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📢Direct study using
#optogenetics
showing a racing heart 💓causes anxiety behaviors (vs the other way around)
There are <100
@dysautonomia
specialists in the US for the widespread condition of
#POTS
(a common form of chronic
#longcovid
).
Largely
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@jcjackson68
@CIBScenter
The presence and severity of big 3 disablers: PEM, dysautonomia, cognitive impairment. These are the big 3 of
#mecfs
. To me, most other symptoms seem to be annoyers (sometimes big ones), but typically don't rise to being full-on disablers.
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@DaveLeeERMD
Their strategy to put it into "same bucket" as MECFS was to actually exclude MECFS screening, namely for post-exertional symptom exacerbation (PESE). Most enrollees likely did *not* have it given recruitment approach. Long Covid is an umbrella term. Serious studies need subsets.
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@yodiggitydawg7
@AlyssaaErinn
You got it: post-exertional malaise (PEM) is a core symptom of chronic post-viral disorder. It's disabling *and* can cause degeneration. It doesn't always strike right away; in fact delay can be a day or even two days later. That's why it takes discipline to avoid it.
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@TRyanGregory
1. Pfizer - notable post-exertional malaise (PEM) incident 1 week later
2. Pfizer - flu-like response, recovery, exercise, major PEM incident, chronic
#dysautonomia
onset
Many parallels between chronic
#longcovid
&
#postvac
syndrome, e.g.
#pots
👇🏾.
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@cjmaddison
@thehill
@nataliesurely
Speaking of hills,
@thehill
, this is me placing 2nd in the Bluemont Vineyard 5K (a 951' climb to finish) in your DC neck of the woods. Now I'm 90% bedbound. But hey, I'll tone it down for you!
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@DrKGregorevic
If one cares about Long Covid -- especially the dysautonomic varieties -- one should care about why the same symptoms sometimes appear after vax.
A very important clue we can't afford to lose to taboo.
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@turnoftheshrew
Open question for me: how many very mild cases of ME/CFS exist. Cases like athletes who give up on their sport, but have okay daily life. Because of neglect, today ME is only dxed (if at all) at more advanced stages. Imho, one way to reduce ME stigma is naming it much earlier.
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