I helped work on this paper on #LongCovid clusters with N3C. It's based on EHR data, which is very biased in Long Covid for multiple reasons, but it's a start. I'd like to see more research factoring in common diagnoses of ME/CFS & dysautonomia.
EHR data is biased towards documented cases, which means:
-more severe/hospitalized cases
-those with access to healthcare
-more respiratory-focused findings (the neurological findings are conspicuously sparse)
2/
Common symptoms/conditions that clinicians are unfamiliar with - like ME/CFS, post-exertional malaise, dysautonomia - don’t get documented.
Very, very few LC symptoms are documented - only a few ever get written down.
3/
When doctors don't recognize an illness (esp for neuro or atypical COVID manifestations), they disproportionately diagnose mental health issues instead - that results in an overdiagnosis of anxiety/depression.
4/
So it's very hard to work with EHR data and should be interpreted with those biases in mind. But the team did a good job given the many obstacles they're working with!
5/
A few things that stick out to me - Cluster 5 could be a dysautonomia/POTS cohort, with lots of tachycardia but low hospitalization, & disproportionately female. Cluster 3 could include ME/CFS folks. Both clusters had high hyperglycemia & importantly didn't have high ferritin. 6/
• • •
Missing some Tweet in this thread? You can try to
force a refresh
Big #LongCovid paper out with a lot of new insights (n=78k)!
-76% of LC patients were not hospitalized (!!)
-82% of female patients non-hospitalized vs 68% males
-36-50 year olds were the highest risk age group
-59.8% of patients female; 46.2% male
-Heartbeat irregularities were more common in age 13-22 (possibly dysautonomia)
-Myopathies (diseases that affect the muscles that control voluntary movement) were 11.1x more common in #LongCovid compared to the same population pre-COVID!
2/
On average, patients with #LongCovid had higher
HHS-HCC risk scores after COVID-19 than before.
HHS-HCC risk scores identify which patients are likely to consume more healthcare resources & incur more healthcare-related costs in the long run.
3/
How does being vaccinated impact the risk of #LongCovid?
A thread on 8 studies (I'll add to it as I find more):
1/
The summary: vaccination definitely seems to reduce the risk of #LongCovid, often by 40-50%.
*But* solidly 9.5%-14% of breakthroughs still result in Long Covid.
These figures make sense to me, given the estimated rate of LC in unvaccinated people (~10-30%).
2/
A caveat: many of these studied people who had been vaccinated relatively recently, so as always, we can expect these findings to change a bit as immunity wanes.
3/
There's a big reality gap right now between people who are actively staying on top of COVID research & those who just trust the current guidelines. There's no judgment here, but I'd like to try to communicate the worldview of the former based on what we know about COVID now:
1/
The US has chosen to prioritize the economy despite strong, countless studies that COVID harms many people, even those without #LongCovid or hospitalization. COVID predominantly affects the *vascular* system (the blood vessels), causing harm to the blood cells & blood flow;
2/
this has a downstream impact on nerves, immune system, & multiple organs, including the brain. Vaccination prevents against death, but not against long term damage.
3/
More evidence that you're not out of the woods if you initially recover from COVID!
In a group of COVID patients, 43% had *delayed* onset of cognitive #LongCovid (1-6 months after infection). The delay was associated with a *younger* age (average 39).
This supports our @patientled data showing that the onset of neurological #LongCovid symptoms often happen later after the acute onset, especially between 1-3 months later:
From the first paper: "Mechanisms that may have a delayed onset include microvascular injury, persistent immune activation, and a post‐infectious autoimmune response." #LongCovid
3/