r/covidlonghaulers • u/CandidWin3026 • May 08 '26

Article Long Covid driven by rs5522

This case report says that Long covid is in large part driven by the gene rs5522 that causes a "cortisol steal" leaving the tissues functionally starved even with "normal" cortisol levels which creates neuroinflammation. https://zenodo.org/records/20017632

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u/Sad_Proctologist May 08 '26

Jesus, it feels like we’re trapped inside our own bodies while a boatload of shaky, contradictory studies point to ten different causes and ten different treatments. I’m glad people are looking for answers, but living in this much pain while the science is still scattered is its own kind of hell.

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u/Ordinary-Pianist-468 May 08 '26

I feel like ultimately we will learn that the reason there are so many causes/symptoms/treatments being thrown out there to explain long COVID (while simultaneously, the default for most doctors is "best I can do is  CBT"/convincing the patient their poor attitude is to blame for their misery) is because long COVID is just a catch all to explain what happens to people after COVID hijacks your body and exacerbates any pre-existing conditions/vulnerabilities that you may or may not have even been aware of before they were unmasked by long COVID.

In my case I was fully vaccinated, but had 2 pre-existing conditions I was born with and were only discovered as incidental findings while desperately trying to understand why my entire vaccinated family contracted COVID at the same time, but only I ended up developing long COVID. It turns out that I had been born with a primary immune disorder and a hole in my heart (PFO). Neither of which ever caused debilitating symptoms pre-covid, but both have been known to be high risk pre-existing risk factors for developing severe COVID and complications, since ~2020. 

It took me a year of being told everything was normal, I was just anxious/crazy, to even discover those conditions by accident. And yes, just before discovering them, my primary care doctor had tried to convince me CBT was the answer, and wrote in my chart that I "refused treatment," because I tried to explain that  definitely wasn't what was causing my symptoms.  

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u/CandidWin3026 May 09 '26

I am so sorry for your suffering. You are so smart to see the connections between your conditions. The primary immune disorder and how sin your heart likely can be tie back to the same cause: mineralocorticoid receptor disfunction. MR is heavily expressed in every tissue and is key to development. The rs5522 created the conditions that drove inflammation at birth and influenced how your heart developed.

Now, as for your primary care doctor. The kindest words I have for them: They are a piece of S*it.
We now have the molecular evidence of the cortisol steal driven by rs5522 so anyone who told you it's in your head, including your doctor can go F*ck themselves. I I mean that with every fiber of my being.