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Amy - The Tonic's avatar

I fully understand why the PVS study is a hot button issue: anti-vaxxers are using it to support their claims and pro-C19 researchers are basically dismissing it for small sample size and the claim that many of these PVS patients may have had COVID at some point, including asymptomatically.

As for the small sample size, in the many LC social media groups and patient Zooms I’ve been on, a large number are PVS patients (or parents of PVS young people). There are many thousands more of these people out there than our COVID-denying government (Reps AND Dems) and the minimizing media want to admit. I commend Yale for including PVS folks in their LC studies - I’ve yet to see other researchers do so. (Full disclosure: I am an LC subject in the Yale LISTEN study. PVS subjects were often well-represented on the LISTEN patient engagement Zoom meetings).

But the other thing I want to say is it’s very dismissive to write off many of these PVS patients as having had a prior infection (so how can we know it was really the vaccine that essentially gave them LC?). Patients KNOW when something went wrong in their bodies. Whether the vaccine in this case was the catalyst or the cause (an important distinction, I admit), we should still be believing these patients and continuing to look for answers. We should not sweep away this important preliminary research with the wave of a hand (not suggesting you guys are doing this, but in many of the media articles about the study, there are researchers quoted as basically doing so, with no regard for the fact that Akiko Iwasaki is a world class immunologist and researcher).

To be clear, I’m not at all anti-vax. But I have as a virus long hauler and as someone with a PVS-afflicted family member, the truth is we just don’t know who out there will react to the virus or the vaccine in a way that induces LC symptoms and quite often, disability. I am a little tired of hearing the argument that the vaccines are safe for the majority of people. While that may be true, it is still a bit of Russian roulette, as those whose lives have been upended by vaccine injury will attest to.

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