Ok, I admit that this video showing the damage caused by COVID-19 is pretty terrifying. But, as I've repeatedly said, I'd rather live in reality than be in denial about COVID and Long COVID, so I'm sharing this with you all.
A long-COVID research and treatment advocate named Ezra recently shared a harrowing video of an ImmunoPet experimental body scan he recently had done. The scan was part of the LIINC (Long-term Impact of Infection with Novel Coronavirus) study and clinical trial he's participating in at University of California, San Francisco.
In the video, he explains the damage to his body that you can see on the scan. I transcribed the video and inserted helpful links:
My name is Ezra and I've had Long COVID for almost two years. A few weeks ago I got an experimental body scan at UC San Francisco as part of a research study on Long COVID and I want to tell you about it.
After injecting a radioactive tracer into my vein, I got a full-body PET CT scan that identifies where in my body my T-cells are activated. The idea is that T-cell activation might show where SARS CoV-2 is still hiding out in my body, or where my immune system isn't working right for some unknown reason. Yesterday I got to talk to Dr. Tim Henrich, one of the researchers, about my scan. Here's what I learned:
What you're seeing here is the PET signal from the tracer combined with a CT scan. The white bones are from the CT scan, the bright colors are from the PET scan and the scale is like fire—white is the highest concentration of the tracer, red is less, and black is none. Keep in mind that totally healthy people have T-cell activation throughout the body and there are also organs where the tracer gets metabolized and excreted. So, the white hot liver, kidneys, and thyroid are totally normal. So let's go through my scan from head to toe.
First, my brain. Those three dots in the middle are expected. That's my choroid plexus. But do you notice the wisps of red in the back of my brain there? I'm trying not to think too hard about it.
The salivary glands always have a lot of T-cell activation, but Dr. Henrich told me that mine are more active than usual.
They're hard to see but the lymph nodes in my armpits are showing more T-cell activation too. Here's another view.
See that red right there? That's my aortic arch and there shouldn't be any red there at all. You can also see T-cell activation on this part of the vasculature, too.
There's the ol' ticker. The bright there on the right of the image is my heart's left ventricle and this is normal, but on the left side of the image—that's no good.
Again, the bright liver and kidneys are totally normal, but the color in the bone marrow of my spine and hip bones, that's not good at all.
Apologies to the queasy but that ring around my descending colon means that it's likely there's infection throughout my gut.
So, that's my body! Looks totally normal on the outside but, on the inside, it's messed up.
There are no approved treatments or cures for Long COVID and people with Long COVID like me—we need your help. Please call your Congress people and ask for more funding for groundbreaking research like this. If you need a place to start, check out longcovidmoonshot.com. If you're interested in joining this study, check out the LIINC study at LIINCStudy.org. Or if you're interested in learning about other research studies for Long COVID, check out LongCOVIDStudies.net.
In the meantime, I'm just going to have to wait it out and hope that my body somehow figures out how to repair itself.
In a post on X, Ezra adds that the immune dysfunction showing up on his scan isn't limited to only people with Long COVID – instead, it's "common in many people after a COVID infection."
Ezra has been living with Long COVID after developing it from a COVID-19 infection in September 2022. He created the Long COVID Studies website to share information and advocate for more research into Long COVID's causes and potential cures. On the Long COVID Studies website, he provides more details:
For months, my symptoms were debilitating, and I wasn't able to access helpful medical care. So I dug into the Long Covid research literature, and over the months since have learned a lot about ongoing research projects. I've been so inspired by the researchers tirelessly working to understand and find cures for Long Covid, and I wanted to do what I can to help. I also learned about research studies in my area and decided to join several. Contributing to the scientific effort by participating in both observational research studies and an interventional clinical trial have been meaningful and validating experiences for me, and I want others to be able to have those experiences too.
I strongly believe that treatments and cures to Long Covid are possible—but it will take the concerted effort of both the research and patient community (not to mention government and other funders!) to ensure that science is done well, and done quickly. I've been inspired by patient-led efforts like the Patient-Led Research Collaborative, Body Politic, and Long Covid Moonshot — and LCS is my small contribution to the community's efforts.
To learn more about Ezra's scan and its interpretation, here's the preprint from the researchers conducting the study, titled, Multimodal Molecular Imaging Reveals Tissue-Based T Cell Activation and Viral RNA Persistence for Up to 2 Years Following COVID-19.
And, please, if you care about your health and the health of your community, mask up (they work!)—We're in the middle of another COVID wave. Stay safe, friends!
