Thread by @PutrinoLab

A tumultuous 24-ish hours since our preprint was released yesterday. I mentioned that this was a fraught issue and I genuinely do understand that people have mixed feelings about the work. I wanted to take some time to respond to some of the concerns and comments that have 1/

arisen. First, and most importantly: #LongCOVID (LC) and post-vaccine syndrome (PVS) both exist. Anyone claiming that all LC or even *most* LC is actually PVS is unserious and is making up nonsense that is not supported by the consensus science. I cannot stress this strongly 2/

enough. While we're talking about Long COVID and its clear distinction from PVS, I'd like to remind people that my team was talking about persistent effects of acute COVID in April and May of 2020. By November of 2020, we pre-printed our first LC paper:
3/medrxiv.org/content/10.110…

Of note, at the time - we couldn't get it published! We were told by the academic community that the science was weak, and quote from one reviewer: "all you have is the patient's word that they have Long COVID and they're probably just anxious or depressed". Fast forward a few
4/

years and in collaboration with @VirusesImmunity and her incredible team we published our paper where we showed that we could identify people from healthy controls using blood biomarkers alone. Pre-printed in '22, and published in late '23:
EVERY SINGLE
5/nature.com/articles/s4158…

Long COVID participant in this study got sick BEFORE vaccines were available. So the argument that these physiological changes were triggered by the vaccine, as many asserted, is an unserious one. Please can we all stay focused on the problem: people are sick, people are 6/

hurting and they need good science to guide pathobiological understanding and interventional strategies. The sick folks that we serve do not need our science to be hijacked to support extreme positions and dangerous agendas. After vaccines started to be distributed to the 7/

general public, we started to note that a small percentage of folks were reporting significant and prolonged adverse events. I really want to point out that when members of our team spoke up in defense of our patients who were reporting what we now call PVS, we received some 8/

pretty aggressive pushback - ranging from harsh words to death threats - I've got a pretty thick skin and a pretty great therapist. I don't need any sympathy, but I'm not going to pretend that this behavior didn't occur. I find it discouraging that I need to state this, but 9/

here we go: you have no right to attempt to erase an illness simply because you find its existence to be politically inconvenient. I am eternally grateful that as my incredible team struggled to find allies in this landscape, there was also @hmkyale and @VirusesImmunity who 10/

were conducting the LISTEN trial. Listening to the community about their experiences with Long COVID, vaccine injury and other complex chronic illnesses. Thanks to their dedicated work and amazing team, we produced two papers based on LISTEN data: one about Long COVID and one 11/

about PVS. Both had comparable sample sizes, used identical methodologies and were released as preprints at the same time (late 2023). By early 2024, the Long COVID paper was published in the American Journal of Medicine, while the PVS paper remains
12/sciencedirect.com/science/articl…

unpublished in pre-print, generating, amongst other things, many of the same critiques we heard about Long COVID in '20: "you can't just take these people at their word that they have PVS", etc, etc. So now onto our most recent paper: we have a responsibility to people living 13/

with PVS to investigate this condition. Yes, the current work has some limitations: like Long COVID, our working definition of PVS relies heavily on self-report, but this is because we're characterizing a new syndrome - until we can characterize it from a biomarker, we must 14/

use a clinical diagnosis (sound familiar?). Yes, the sample size is small - well if you thought it was hard talking about PVS, you should publishing about it. And if you think publishing about it is bad, just try getting funding to study it. The deep immune profiling work is 15/

extremely expensive and all the people working on this are doing it strictly as "night and weekend" work on a shoestring budget in service of a community that is being minimized and gaslit (sound familiar?). This means that releasing preliminary data with a small sample size 16/

was necessary for us to establish the syndrome and talk about next steps. Of course we would prefer to have been able to publish on several hundred or thousand patients, but that would take millions of dollars of unrestricted funds and we don't have that. Lest we forget: many 17/

seminal papers that establish new illnesses or syndromes are case studies that don't utilize control cohorts. Ppl living with PVS deserve the release of data that validates their lived experience in a timely fashion, and so this is what we have committed to doing. Yes, more 18/

research is necessary on this phenomenon so that we can understand how to treat and manage PVS.
So that we can develop biomarkers for diagnosis of PVS.
So that we can develop BETTER VACCINES with fewer side effects. Vaccines save lives. We have been explicit in this message 19/

from the very beginning and stand by the vital importance of vaccines in the maintenance of public health. The study that was pre-printed yesterday is the start of a conversation, not the end of the conversation - we have so much more to discover and learn from this work. 20/

As we continue to learn, I would remind you that our singular purpose is to serve people who are suffering with PVS. They have a right to answers, they have a right to be believed and they have a right to competent care. If you don't like our science, do better science: make 21/

our science obsolete with your own. Finally, I genuinely hope that no one thinks that we released this work lightly - we understand its gravity, but also feel the urgency for folks who are sick to be believed. Ultimately we will always center the needs of our patients first. /end