Dr. Alice 💕 Profile picture
Oct 12, 2022 9 tweets 4 min read Read on X
Is #LongCovid a "real thing," #MedTwitter? I'll let you decide.

Here's my own case: I'm a cardiologist(40s) with no prior medical Hx & have run tons of marathons & several 1/2 Ironman Tris.

In March '20, I fell ill and became quickly hypoxic and confused. It was COVID-19. 1/
I was hospitalized 2x for hypoxia within 2 months, but had "clear" CXR and chest CTs. My PaO2 was 78 on an ABG, but my PFTs were normal. I had left arm & leg numbness and apnea during sleep, which wasn’t worked up. I was sent home from hospital 2x with a Dx of "anxiety." 2/
My workup was delayed, because my colleagues thought I "looked fine” despite fact that I was hypoxic, confused, couldn't walk to the bathroom without dyspnea, and couldn’t work.

Over 2.5 years I was diagnosed w:
-COVID encephalopathy
-Anoxic brain injury w ischemic lesions 3/
-Microvascular angina
-Appendicitis(s/p appy)
-Acalculous cholecystitis (s/p chole)
-Stage 3 Chronic Kidney Dx
-Ischemic Colitis
-Leukopenia
-Sleep apnea
-POTS
...& More!

I NEVER had elevated d dimer, CRP, ESR, or troponin-I.
But did have evidence of vascular inflammation 4/
...But ONLY when more sophisticated vascular inflammatory markers were checked. Check out this new study, which showed 14 more "nontraditional" vascular transformation biomarkers were elevated in #LongCovid compared to controls.
molmed.biomedcentral.com/articles/10.11… 5/
Two of the vascular biomarkers, ANG-1 and P-SEL, provided 96% classification accuracy for LC. Finally...great biomarker candidates!

SARS-CoV-2 is causing an endothelial (blood vessel lining) inflammation and damage in at least some people with #LongCovid. Why is this an issue?6/
Damaged blood vessels can lead to blood clots and damaged organs. In #LongCovid, there is evidence of MICROvascular damage, sometimes ONLY seen with special testing. Here's a study where they used Xenon MRIs to look at lungs in people with LC: 7/
pubs.rsna.org/doi/10.1148/ra…
Hopefully you can see where I'm going here- #LongCovid is a "stealth" disease, which requires "outside the box" thinking.

While mine was a more severe initial case with some abnormal testing(eventually)...A person can have "normal" traditional testing, and still be quite ill. 8/
Many people with #LongCovid had/have very mild initial cases, but are suffering greatly & need to be taken seriously.

What's the point of this thread? Not for pity, vaccine debates, or treatment suggestions.

It's to convince YOU, dear colleagues, that #LongCovid is real.

/end

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More from @calirunnerdoc

Oct 6
Thought I had #LongCovid. After the recent @NIH meetings, not sure. There was limited discussion of cardiovascular events, organ damage, immune deficiencies, hospitalizations & death.

Now I’m wondering what I…& (insert statistic here) others…actually HAVE according to @NIH.
For example, people with cardiovascular complications weeks/months post acute COVID: arrhythmias, congestive heart failure, MIs, strokes, pulmonary embolisms-are also usually NOT formally documented/coded as having #LongCovid, from what I’ve seen.

So, what do these people have?
Looks like this travel insurance company knows exactly what they have…

So why don’t we hear more about these #LongCovid outcomes from the @NIH @NIHDirector & other government affiliated & subsidized organizations?

Is it because docs “already know how to fix” these issues?
Read 5 tweets
Jul 17
When “experts” called #LongCovid a “syndrome” or “syndromic” two years ago, I knew patients were in trouble. We already knew it was persistent SARS-CoV-2 causing organ damage.

Since when are chronic infectious diseases referred to as a syndromes- and not the name of the cause?
With zero data or biomarkers to subtype or make separations, PowerPoint slides were presented at conferences separating the “organ damage during acute infection” crowd with the “syndromic long COVID”with a grab bag of symptoms.

It’s a continuum of disease & it always has been.
This apparent confusion has had real consequences. I shouldn’t have to meet w/professional orgs in 2024 convincing them “long COVID is real” because look-even “one of us” nearly died from it!

Patients shouldn’t still be gaslit about this “mysterious” condition. But here we are.
Read 4 tweets
Aug 18, 2023
Have several physician friends who’ve admitted they’ve been harassed & mocked for WEARING A MASK IN HEALTHCARE.

This doc works with transplant patients & had a relative die of #LongCovid. She’s also witnessed what C-19 did to my health.

I don’t recognize my profession anymore. Text saying “I still wear an N95 mask to work and people regularly make fun of that.” Published with permission.
@theacecoalition @joaquinlife have been advocating tirelessly to #KeepMasksInHealthcare.

We must continue to work to normalize masking in healthcare, & remove the mask stigma. We did it with gloves in the 1800’s- we can do it now with masks to protect against BSL-3 pathogens.
@theacecoalition @joaquinlife NO ONE should acquire C-19 in a hospital, medical/dental clinic.

NO ONE should fear for their life while seeking healthcare for themselves/loved ones.

NO ONE should lose their medical career to #LongCovid because they were repeatedly infected at work.

The time to act is now.
Read 4 tweets
Jul 27, 2023
This piece contains very nice interviews detailing the patient experience with fatigue after SARS-CoV-2 infection & in patients w ME/CFS.

It doesn't headline that a good portion of #LongCovid "fatigue" is due documented brain & brainstem injuries & effects of persistent virus.
@WesElyMD summarizes these effects quite well in his recent essay. Dr. Ely describes these C-19 induced brain injuries as "haunting," & he's right. The effects of SARS-CoV-2 on the brain are terrifying. Life altering. Career ending. In some cases, fatal. statnews.com/2023/02/16/the…
Journalists presenting information on #LongCovid & #MECFS to the public MUST stop focusing on symptoms.

Symptoms are driving the headlines, and headlines drive cognitive biases, which influence public and government perceptions of these illnesses, and even clinical care.
Read 4 tweets

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