Discover and read the best of Twitter Threads about #Dysautonomia

Most recents (24)

During med residency in late 1990s, I noticed that patients w/ hypermobile joints ("double jointed") frequently had episodes of unexplained tachycardia, headache/lightheadedness.
I suspected Marfan's but never found the classic signs for it (i.e., tall stature, high arched palate, or "thumb sign" [see images below from… ]).

Plus, for whatever reason, many of these patients were women.
So I chalked this to some unknown connective tissue disorder which may/may not have some relationship with these symptoms.

Years later, I found out that these patients likely had Ehler-Danlos syndrome #EDS. (Yes, I should have known, but my Harrison's textbook was no UptoDate).
Read 14 tweets
🧵 An absolutely fascinating talk by William Gunning @Dysautonomia conf - Innate Immune system Activation in PoTS. A complex topic made easy to understand by a Prof in pathology & it makes a lot of sense to me, it’s like seeing another puzzle piece! Here’s some interesting
Platelets are very important in innate immunity & homeostasis (still being debated)
Platelets have over 400 biochemicals!
Serotonin is produced in the gut & pooled in platelets for delivery around the body (outside of CNS 99% of serotonin is in the platelets)
3/Symptoms of low seratonin are commonly seen in PoTS
Platelets secrete a number of pro-inflammatory cytokines & chemokines
All cells secrete chemicals that recruit inflammatory cell response
Dr Gunning has done some studies:
- one showed significant ⬇️ in dense granule number
Read 7 tweets
🧵 Long covid & autonomic dysfunction with Dr Mitchell Miglis & Charlie (has lived long covid experience) @Dysautonomia conf #DysConf2022

PoTS is the most common autonomic dysfunction associated with long covid
67% of the people surveyed in the US had a compass-31 score
2/ suggestive of moderate to severe autonomic dysfunction with no difference between those hospitalised & those not
SFN is common in long covid
Potential mechanisms include: tissue injury, immune mediated, micrclotting, viral persistence, MCAS, baroreflex impairment,
3/ deconditioning (does not cause it, deconditioning is secondary consequence), gender physiology.
Lots of Brian fog theories inc: neuroinflammation, cerebral hypoperfusion, tissue damage, product of systemic disease
Autoantibodies mentioned - higher prevelanve in PoTS, not
Read 4 tweets
🧵 Neurovascular dysregulation during exercise in ME/CFS & long covid with David Systrom @Dysautonomia conf. Some key points:
Preload failure contributes to exercise intolerance
Inability to take up oxygen in periphery tends to be either left to right shunting or #DysConf2022
- Left to right shunting in periphery in some people with ME/CFS
- Some with have ME/CFS also have small fibre neuropathy
- Poor systemic O2 extraction may also be related to mitochondrial dysfunction in skeletal muscle in ME/CFS
Hyperventilation is common in
3/ME/CFS & long covid
- Study is underway looking at mitochondrial dysfunction in ME/CFS
- On tilt test cerebral blood flow was shown to go down in both people with ME/CFS & PoTS, with PoTS found that the vasoconstriction is related to hypercapnia in upright tilt
Read 4 tweets
🧵 Brilliant talk by David Putrino @Dysautonomia Autonomic Rehab Approaches to Long Covid care
We need to:
- Measure subjective symptoms - use outcome measures alongside self reports
- Look for organ pathology, make sure red flags ruled out
2/Correct deviations from normative physiology - avoid common triggers

Common triggers include stress (it doesn’t cause PoTs or dysautonomia but makes it worse), dehydration, over doing things, weather changes, consuming large meals, premenstrual period, alcohol & caffeine.
3/If have no hyperventilation and low CO2 at end tidal volumes a breath practice with a hold & slow exhale like 4:7:8 can be helpful. If there may be a breathing pattern disorder it needs assessing by a respiratory physician & respiratory physio can treat (I’ve added the latter)
Read 6 tweets
This paper from 1988 notes infection-triggered fatigue syndromes like #LongCovid #MECFS occurring as far back as 1934 (though other papers show they existed long before that). It also discusses some potential hypotheses for cause, which might sound very familiar...
🧵(1/6) Table 2: Some major outbreaks of fatigue syndrome  Los Angel
"the presence of muscle damage associated with a disorder of oxidative metabolism"

"reduced respiratory function of the mitochondria"

"A variety of autoantibodies can be demonstrated" (2/6)
"Immune complexes can be detected in the blood [...] deposited in vascular endothelium [...] often associated with inflammation"

"Allergy has been a popular hypothesis put forward to explain prolonged malaise"

❗️"not developed enough antibody to abolish virus activity" (3/6)
Read 6 tweets
🍾 Tiny Bubbles 🍾

"Since early 2020, we and other researchers have pointed out that acute Covid-19 is not only a lung disease, but actually significantly affects the vascular (blood flow) and coagulation (blood clotting) systems.
A recent study in my lab revealed that there is>
significant microclot formation in the blood of both acute Covid-19 and long Covid patients. In blood from patients with long Covid, persistent microclots are resistant to the body’s own fibrinolytic processes. We found high levels of various inflammatory>…
molecules trapped in the persistent microclots, including clotting proteins like plasminogen, fibrinogen and Von Willebrand factor, and also Alpha-2 antiplasmin (a molecule that prevents the breakdown of microclots). The presence of persistent microclots and hyperactivated>
Read 22 tweets
1/ Having chronic illnesses and disabilities in a society that favours the well and able bodied, really fuels the shame that some with disabilities feel

This can influence how we think others see us and how we want them to see us
2/ Most of my symptoms are invisible, but some are obvious when I’m having a flare up

I still feel awkward about being around people when I’m unwell because of comments and judgments

As this month is #DisabilityPrideMonth I thought I’d share some pictures, partly to
3/ help me start feeling more comfortable about my disabilities, but also to try and help normalise how others see us

My message to others others is, do not judge, whether someone looks disabled or not is irrelevant

Here are a few pics and detail of the conditions I have
Read 12 tweets
🧵The 7 questions I submitted for the White House & HHS Call on #LongCovid (7/15, 4pm EST):

1. Why has public health (e.g. CDC) failed to include a warning of long-term effects of #COVID19 in the recommendations for prevention of infection? How will they be held accountable?
2. This is truly a national/international crisis. Will the White House include #LongCovid in its next public address, press conference, etc? The American public is still largely unaware of the extensive damage and the millions of people experiencing it.
3. Does the White House and HHS support congressional legislation for #LongCovid, including the CARE for Long Covid Act and the TREAT Long Covid Act? If so, how will it make that support known?
Read 7 tweets
"What’s more devastating is that the next three struggles the researchers identified—constructing an explanation for suffering, negotiating with the health care system, and proving legitimacy—are all toxic side effects of modern medicine" 1/
Sjogren's patients are often treated as if their symptoms could not be that bad; many physical symptoms are psychologized, especially autonomic and other neuropathies which are labeled as anxiety or FND. Patients often feel abandoned or gaslit. #dysautonomia
My 2021 informal survey of 100 patients asked their biggest challenge living w #Sjogren's. The top answer was not symptoms, but the failure of doctors to treat it as a serious systemic disease. Patients often had to seek specialty referrals on their own. 3/
Read 8 tweets
We did the right thing. We followed the science and did what doctors told us. Now the science is abandoning us and doctors are gaslighting us.
#CanWeTalkAboutIt greyscale picture of me, lo...
You all know what we're talking about. Im not going to write it in this thread. The silence is deafening & the abuse is deadly

Im participating in this to support my (new) family; we’re all suffering. If you saw my DMs you would be horrified at what some have & are going through
Many have suffered unspeakable things. Things you couldn't make up if you were writing a horror movie. This is of course not new. But there is an added layer of denial regarding the cause. I've been very lucky in my journey - no denial. This is not the case for most others
Read 18 tweets
Some long weekend reflection as we work to build effective research infrastructure around #LongCovid and other infection-associated chronic illnesses like #MECFS and #Lyme. For those who don't know, I was born and raised in Perth, Western Australia, so here's a "local" story. 1/
Apologies if this is a familiar story to many, but I think there is much wisdom to be gained. For the longest time, gastric ulcers were thought to be related to excess acid in the stomach and worsened by stress/lifestyle. People were treated for peptic ulcers with antacids and 2/
the recommendation to reduce stress in their lives. This went on for decades until a Perth-based physician/scientist, Dr Barry Marshall, made an accidental discovery that led him to believe that gastric ulcers may not be stress-related at all: in fact they might be a result of 3/
Read 13 tweets
BIG PROBLEMS with framing of new baseline study of NIH intramural #LongCovid #PASC cohort

lack of abnormalities on ROUTINE tests

no objective abnormalities

It ignores #LongCOVID similarities to #MECFS & advances in research on both, including those funded by NIH!

no evidence found

evidence against


Yes, it's a baseline study. But the pivot to discussions of depression and anxiety when abnormalities weren't easily found is jarring.

This follows the HORRIFYING tendency of medicine to psychologize illness, when physiological abnormalities aren't found.


Read 15 tweets
A team of researchers from NIH, Harvard, Johns Hopkins & Mt. Sinai just published a case series on 23 previously healthy individuals who developed #POTS or other neurological problems within 1 month after receiving a #COVID vaccine. Let's dig in: 🧵
They found autonomic dysfunction, small fiber neuropathy, inflammation of small fiber nerves, and that immune proteins called complement were being deposited on the small fiber nerves, which is seen in some autoimmune neurological disorders. 🧵
They emphasize that their study does NOT conclusively confirm that COVID vaccines caused the neurological illness, but circumstantial evidence suggests immune dysregulation is likely involved. They call for further research to understand mechanisms and clinical trials. 🧵
Read 11 tweets
#chronicillness Twitter to doctor advocates
-you’re only speaking out because you’re sick yourself
-now you know what it’s like (implication- all of us neglected & psychologised patients before. NOT true- some of us just did our best within a system stacked against us)
-you need to mention ‘x’ disease as well. (We’re learning as fast as we can. Remember we are sick too. Some of us are bed-bound lying in darkened rooms. You know how much energy it takes to speak up)
-don’t dabble in areas you know nothing about. (In my case #Palestine. Being a chronic illness advocate doesn’t make me a one-trick pony. I’ve visited the West Bank & witnessed firsthand the horrors of #IsraeliApartheid. So I will speak up- I’m not here for anyone’s comfort
Read 5 tweets
Day 823 of my #longcovid battle
a thread.
This will mostly be rambling, screaming out into the void as I've felt even more disconnected as my health continues to deteriorate.
Took cpl hrs to get this out & is all over the place but that's ok too.
"mild" case of covid February 2020 led to LC rearing it's ugly head by June 2020. In 1styear, I went from being healthy & active to suffering 100+ symptoms.
Each dr visit & scan found further degeneration & damage. I was met w dismissal & gaslighting from med community.
I found great solace & help in the LC communities on social media. It gave me strength to keep advocating for healthcare & finding ways to self manage symptoms until I could find a dr to listen.
I firmly believe I wouldn't have survived w out y'all.
Read 22 tweets
Today's 🧵 is about autonomically-led post-exertional symptom exacerbation (PESE) in #LongCovid, #MECFS and other infection-associated chronic illnesses. This form of PESE is different to metabolically-led PESE, but it is also possible to have both occurring at the same time (1/)
Autonomic dysfunction happens a lot in #LongCovid and #MECFS and can be highly debilitating. The autonomic nervous system (ANS) manages a lot of intricate body physiology. For instance, every time you change position from laying down to sitting up, your ANS makes changes to (2/)
your blood pressure and heart rate to make sure that blood can travel all the places it needs to (e.g. the brain) despite the new position. The ANS does 1000 little ingenious, complex and entirely automatic functions like this on the daily. As such, when people experience (3/)
Read 18 tweets
Time for a 🧵 about metabolically-led post-exertional symptoms. This is quite possibly the most dangerously misunderstood piece of #LongCovid, #MECFS and infection-associated chronic illness puzzle (including non-viral pathologies that involve mitochondrial damage). (1/n)
First: many things can cause post-exertional symptoms, especially in the case of #LongCovid, where a large % of people have associated #dysautonomia. Understanding this is crucial to maximizing the utility of interventions such as autonomic rehabilitation and pacing (2/n)
without doing more harm than good. However, today is about metabolically-driven #PEM/#PESE. It should be fairly well-established at this point that many people with conditions like #LongCOVID and #MECFS have evidence of mitochondrial dysfunction, oxidative stress and (3/n)
Read 21 tweets
Short 🧵on symptom measurement in #LongCovid / #MECFS and other chronic illnesses. We need to do better. Many of the symptoms that we're trying to track don't have a physical biomarker, and while patient-reported outcomes (PROs) are helpful, then need to be far more (1/n)
rigorously developed. Let's pick on fatigue as a #LongCovid symptom, because it is incredibly disabling for most folks with LC and it is not well characterized. To measure fatigue, my team uses the Fatigue Severity Scale. Why? Because it is well-validated and allows us to (2/n)
reliably track change in response to interventions. Is it perfect? Far, far from it. The FSS gives us a reliable, but basic understanding of fatigue severity and how it is impacting daily life. What it doesn't do, however, is help us to differentiate different causes and (3/n)
Read 11 tweets
Ok. Another request, another 🧵. Today, we address the strained relationship between psychology, psychiatry and #LongCovid. Much of this may also apply to #pwME and other infection-associated chronic illnesses (h/t again @microbeminded2) and other “invisible” illnesses (1/n)
Psychology and psychiatry have a complex history with syndromic illnesses. Why? When illnesses are diagnosed on the basis of symptoms rather than “objective” tests, some clinicians will doubt the reality of the condition. Let’s start by psychoanalyzing them, shall we? (2/n)
This behavior is not justifiable, scientific or ethical. But it is also is not new: in the 1800s, tuberculosis was regarded by most physicians as the “disease of the sensitive” before tubercule bacillum was discovered, the “cancer personality” was touted for decades (3/n)
Read 22 tweets
Ok. As promised, here is a super-🧵 on cognition and #LongCovid. This will be a combination of published material and things that we have observed in-clinic. This is not intended to be definitive nor epidemiological and so it is highly likely that your personal experience (1/n)
may deviate significantly. This is about my reading and experience of cognition and #LongCovid but from what I have seen shared in the comments of my tweet yesterday, it seems that much of this may apply to other infection-associated chronic illnesses (h/t @microbeminded2) (2/n)
such as #MECFS, #Lyme and #dysautonomia/#POTS to name a few. Let’s start out with naming. I try not to use the term “brain fog” because I don’t think it conveys the seriousness. People with LC are experiencing cognitive dysfunction that often results in cognitive impairment (3/n)
Read 25 tweets
@SJschmidt963 A reply in a thread 1/16
“Often occurs with LongCovid” does NOT exclude other associations NOR does it imply LC as the only cause. If this conversation was about Ehlers Danlos Syndrome, it would be equally valid to say that “dysautonomia / POTS often occurs with #EDS”. But it wasn’t, so I didn’t. 2/16
Here is a link to a peer review paper by Hannah Davis @ahandvanish et al showing the link between #POTS and #LongCovid : 3/16
Read 16 tweets
A (LONG) thread for patients with #mecfs #longcovid expecting surgery and the #surgeons #anesthesiologists #crnas and #pacunurses caring for them. I'll share my recent perioperative experience. This is neither comprehensive nor medical advice, but I hope it helps. (0)
1. Recovery was a bitch. I've had general anesthetics before, even in the same organ system. This was not the same body undergoing #anesthesia.
2. Set Expectations: Physicians
Expect long lists of meds, allergies, requests, and questions. Listen to and engage with your patient. They may educate you. Anticipate a potentially prolonged and complicated recovery. This is not a fast-track. Respectfully, don't be a Dick.
Read 13 tweets
Sind wearabels (smartwatch, fitnesstracker) bei #longcovid sinnvoll?
Dickes JA!
Sie sind ein einfaches Mittel, um Pacing zu verstehen und umzusetzen.
Nicht nur für die Datenspende-App des #RKI
Die kosten nicht mehr die Welt (in ausreichender Qualität < 100€)
-Schlaf (Dauer, Qualität)
-Herzfrequenz … nachts, Ruhe, Belastung, Erholung
-Herzfrequenzvariabilität als Parameter für die #Dysautonomia

diese Werte sind gut geeignet,um in Kombination mit körperlichen Beschwerden Überlastung frühzeitig aufzuspüren/zu vermeiden
Die sauerstoffabhängige (aerobe) Energiegewinnung, die wir für Dauerleistungen benötigen, läuft sehr reduziert ab. Schon bei kleineren Belastungen ist ihre Kapazität erschöpft. Also der Motor läuft nur auf einem Zylinder.
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