I know this preprint is getting a lot of attention- I wanted to talk a bit about its findings and address some of the questions that are floating around: www.medrxiv.org/content/10.1... Thread🧵 - ThreadSky

enirenberg.bsky.social • 8 days ago

I know this preprint is getting a lot of attention- I wanted to talk a bit about its findings and address some of the questions that are floating around:

https://www.medrxiv.org/content/10.1101/2025.02.18.25322379v1.full-text

Thread🧵

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carlf.bsky.social•8 days ago

Biggest issue is that it has taken nearly 4 years after those of us affected to actually get ANYONE to do a study like this, despite many of us begging for help earlier. Of course most of us have had COVID now. I was nucleocapsid negative when reaction started, only n+ve after cov 6 months after…

carlf.bsky.social•8 days ago

…sx started shortly after 1st dose. More research is needed into these cases urgently - it could actually help untangle long covid given the similarities in symptoms - autoimmune or Abzymes was another theory I saw. This paper should be a starting gun, not another stick to lash at those harmed.

enirenberg.bsky.social•8 days ago

So, a few things:
- nucleocapsid antibodies do not form immediately as a result of infection. It is possible that you were seronegative for N when your reaction started but were still infected
- A dispassionate discussion of the paper's limitations and data is not "a stick to lash at those harmed."

carlf.bsky.social•8 days ago

ZOE selected me based on sx I was reporting g through summer 21. I was nucleocapsid negative in first months of sx. 2 weeks after infection I was nucleocapsid positive. Someone should have been responsible for researching these reactions at the time. But nobody was. That’s the biggest failing.

enirenberg.bsky.social•8 days ago

People who are experiencing adverse events need actionable high-quality data and studies to be able to identify what could be happening and do something about it. When the data is unrevealing, or the methods are questionable, that should be pointed out explicitly.

carlf.bsky.social•8 days ago

100% agree we need high quality data. But who is doing it and who is funding it? There is a huge issue with a total lack of interest by reputable researchers to undertake this. Credit to @virusesimmunity.bsky.social for doing even this. 4 years out and this is the 1st that’s even attempted…

carlf.bsky.social•8 days ago

…to to quantify it. And it gets harder to untangle it as time goes on.

enirenberg.bsky.social•8 days ago

To start with: I would not go as far as to reject the possibility of vaccines in very rare cases potentially inducing an ME/CFS-like syndrome, but it is extraordinarily difficult to disentangle these from a case of PASC given the very high prevalence of SARS-CoV-2 infection. Now, in fairness...

momofakidwithpots.bsky.social•8 days ago

https://doi.org/10.1101/2022.05.16.22274439

momofakidwithpots.bsky.social•8 days ago

The NIH studied a small group with small fiber neuropathy after vaccination.

enirenberg.bsky.social•8 days ago

because the vaccines in question use solely the spike protein, you can look for antibodies against other antigens (or antigens themselves) like nucleocapsid (as done here) to distinguish between them- but these approaches are not foolproof. For example, we see that people who were vaccinated...

enirenberg.bsky.social•8 days ago

before becoming infected are less likely to produce detectable antibodies against the nucleocapsid protein (which likely reflects more immediate and robust control of the infection). This is (in part) how we knew from the Moderna vaccine trials that it was preventing infections.

enirenberg.bsky.social•8 days ago

As for the data themselves: to the best of my ability to tell, the study is based solely on a single blood sample collected in a single point in time for all participants. The inability to see the evolution of these parameters over time, and especially a lack of pre-PVS samples from participants...

enirenberg.bsky.social•8 days ago

greatly constrains any causal conclusions about any descriptive findings and what role, if any, they may play in the development and pathogenesis of PVS. I am a bit puzzled about the choice of some methods though. For example, the preprint reports a significantly higher rate of EBV reactivation...

enirenberg.bsky.social•8 days ago

in the PVS patients- but this is entirely based on antibody titers and without a baseline measurement of titers before vaccination, it's hard to say that these represent true reactivations rather than the fact that the baseline reactivity to EBV among cases is generally higher. I don't really get...

epidemiocracy.bsky.social•8 days ago

not a solid sample size & hasn’t been peer reviewed. I wish that was enough for the general population to stop reading.

carlf.bsky.social•7 days ago

Two identical studies by the same team into patient reported post covid issues, and patient reported post vaccine issues, same methodology. One gets reviewed one doesn’t. Why?

https://bsky.app/profile/putrinolab.bsky.social/post/3lincfs6fvc2h

epidemiocracy.bsky.social•7 days ago

Why? A different hypothesis and purpose and methods. The article you are sharing is just descriptive stats describing characteristics of the same sample of people and doesn’t use statistical methods nor make claims of A => B. The non-peer reviewed paper is applying a diff hypothesis claiming A=> B.

carlf.bsky.social•7 days ago

No, Putrino is referring to two different studies - not the most recent one in this thread. They did two identical studies of patient reported issues earlier in the pandemic, one post covid, only one post vaccine. Only 1 of those studies got peer review. Why?

epidemiocracy.bsky.social•7 days ago

Ok then what study is the the identical one that didn’t receive peer review then and is identical? Because the earlier one above in this thread is not the same method and not the same hypothesis.

carlf.bsky.social•7 days ago

Peer review - patient reported post covid;
https://www.sciencedirect.com/science/article/pii/S0002934324002389

Non review - patient reported post vaccination;
https://pmc.ncbi.nlm.nih.gov/articles/PMC10659483/

enirenberg.bsky.social•8 days ago

It’s hard to know what an appropriate sample size is for this condition. I agree it’s small, but if the condition is very rare (which I believe is the case), larger sample sizes might be infeasible.

epidemiocracy.bsky.social•8 days ago

very good point!

yousitonmyspot.bsky.social•8 days ago

📌

rtarlinton.bsky.social•8 days ago

you've been far nicer than me and actually read it properly as a reviewer would - I was just very angry that it took less than a few weeks for someone to manipulate a very poor set of data to support current USA gov obsessions - that is an extremely cynical funding bid...

carlf.bsky.social•8 days ago

Have you considered running your own study on this cohort? Many of us would love a study that monitored us over many years. Been asking for help for 4 years…

rtarlinton.bsky.social•8 days ago

I’m not in the USA so no… there are some very large cohort studies run by others in the uk that are better set up, mostly they show that most people get better with time and that those who don’t are likely to eventually be diagnosed with a recognised autoimmune disease

carlf.bsky.social•8 days ago

I’m in the UK and am not aware of any studies with post vaccine cohorts. And I’m not aware of anyone within the UK support groups involved in any large cohort studies - it’s actually been discussed to have patients run their own case series to try and raise interest.

rtarlinton.bsky.social•7 days ago

You aren't aware of any of the long covid cohort studies?

carlf.bsky.social•7 days ago

Post vaccine cohort is the topic.

rtarlinton.bsky.social•7 days ago

If you believe you have suffered an adverse side effect from vaccination that is reported here: https://coronavirus-yellowcard.mhra.gov.uk/ - Autoimmune diseases are frustrating to diagnose and treat, vaccination (of any sort) can trigger exacerbations of them

agnesjtrow.bsky.social•8 days ago

📌

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