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Aug 8 • 6 tweets • 2 min read
Today is #SevereMEDay. People with severe ME/CFS live out their lives bedbound in a darkened room, with headphones, seeing no one, because even passive sensory input depletes them of energy. Many with #LongCovid will end up here. It is one of the worst illnesses that exists. 1/
Right now as I’m resting my brain in the dark and quiet, I’m thinking of everyone who has to spend all of their time like this, in a place absent from the world, and sending you love. 2/ Dark room looking at the ceiling, a little light comes in th

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More from @ahandvanish

Hannah Davis Profile picture
Jul 18
Women have higher false negative rates on PCR & less accurate antibody tests compared to men. One metastudy estimated that 58% of people initially have a false neg test. The result is stories like these: people, mostly women, denied care & participation in #LongCovid research.
Read 4 tweets
Hannah Davis Profile picture
Jul 7
Last month, the US Census released data showing that 7.5% of the entire US is *currently* experiencing #LongCovid for at least 3 months. That's 1 in 13 people!

If that seems high to you, here's a thread to understand how it can be true.

census.gov/data/tables/20…

1/
About 13% of the population has diabetes. That's 1 in every 7-8 people.

But if you had to guess how many people in your life have diabetes based on the ones you *know* have diabetes, you're likely to underestimate.

2/
Like #LongCovid, everyone with diabetes doesn't tell everyone else in their life.

Like #LongCovid, diabetes has different prevalence rates depending on different ages, race/ethnicities, and genders.

Like #LongCovid, some diabetes goes undiagnosed.

cdc.gov/diabetes/pdfs/… 3/ Prevalence of diabetes across race/ethnicity and gender, ranPrevalence in diabetes across age, ranging from 2-3% in the
Read 5 tweets
Hannah Davis Profile picture
Jun 27
Last week, a report was published on how COVID information was intentionally hidden from the public.

Among the details:

1/
Testing was seen as hurting Trump politically, so testing guidelines were intentionally made narrow for that reason. Direct quote: "Case identification is bad for the president’s re-election."

(This is absolutely still happening).

2/
7 inaccurate narratives were pushed by a WH pandemic adviser, including that children were immune, football players couldn't get seriously ill from COVID, and that COVID was like the flu.

coronavirus.house.gov/sites/democrat…

3/
Read 6 tweets
Hannah Davis Profile picture
Jun 13
I've been through a lot on this #LongCovid journey but eating radioactive eggs was a whole new level
been sitting in a hospital for 6.5 hours waiting for the radioactive eggs to course through my body
hope I come away from this with new powers
Read 4 tweets
Hannah Davis Profile picture
Jun 6
It's hard to communicate that there is no restaurant, concert, event, conference - nothing - that is worth #LongCovid and the resulting illnesses (ME/CFS, dysautonomia, blood clotting). In most cases, Long Covid will destroy your ability to do any of these things regardless.

1/
Not having these things in your life is absolutely a huge loss and I'm not trivializing it - it's unfair of our governments to put us in these positions, because it's totally possible to make events and places safe from COVID.

2/
But #LongCovid is life destroying. We've all had an old phone that doesn't hold a charge - imagine that but with your body.

It is hell. You can do a few small things a day, and then you have to stop. You can't remember the people and things that matter to you most.

3/
Read 4 tweets
Hannah Davis Profile picture
May 26
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.

1/
medrxiv.org/content/10.110…
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/
Read 6 tweets

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