A review of recent Creutzfeldt-Jakob disease VAERS reports

What we lost due to the EU data purge

If you don’t know, please first read about the CDC purge of all EU writeups in Nov 2022.

The foreign data set was gutted this week in VAERS and the cancer signal was halved, the myocarditis dose 3 response signal was lost and 994 spontaneous abortions/still births were dropped

Does it affect VAERS analysis?

A couple of days back, WelcomeTheEagle posted this on Twitter:

Link to tweet

You can click on the link to see the tweet, as it started an interesting discussion.

CJD is one of those diseases where you hope VAERS reports can capture as much information as possible, given its very high mortality rate.

Creutzfeldt-Jakob disease (CJD) affects about 1 individual per million per year worldwide. Approximately 350 cases are diagnosed annually in the United States. Sporadic CJD is the commonest form of human prion disease, and the mean age of onset is 61 years. Death occurs in nearly 70% of patients within 1 year of onset.

Source

Here I have juxtaposed two CJD VAERS reports next to each other.

As you can see, the most recent foreign reports do not have any associated writeups. In turn, this makes it much harder to see what is going on with these patients.

Does the writeup matter?

Given that the CDC has all this information anyway, does it matter if the writeup is published or not?

I believe it does.

For example, recently some authors published a paper based on US VAERS reports where they analyzed Guillain–Barre Syndrome.

Why all research papers based on VAERS are wrong about vaccine safety

They had independent medical professionals review the writeups and decide whether the disease was diagnosed correctly.

Here are the results:

In 2021, 815 reports of GBS/V were filed. The completion rate for the variables in VAERS was 93.5%. The median age was 55 years (interquartile range [IQR]=5–86 years) and 50% of the subjects were male. The median time of onset was 10 days (IQR=0–298 days), 11% reported onset on the day of vaccination, and 13% reported onset after 6 weeks. Hospitalization was reported by 77%, with a median stay of 7 days (IQR=1–150 days). Lack of recovery, permanent disability, and death constituted 57%, 46%, and 2% of the reports, respectively. Based on GBS/V criteria, 47% of the cases were definite, 16% were possible, and 37% were not GBS/V or insufficient data. An alternate diagnosis was provided in 9% of cases.

As you can see, the authors don’t ask if it was caused by the vaccine.

Of course, the data acquired from the VAERS analysis did not allow us to determine a causal relationship between COVID-19 vaccination and GBS/V, and is must be acknowledged that VAERS reports adverse events that are not necessarily confirmed cases. The data were also entered both by patients and by health-care professionals, and the accuracy and completeness of the information may have varied depending on who entered it.

But the writeups are required even to verify if the right symptoms were assigned to the report.

A review of foreign reports received before and after 15th Nov 2022

I created two datasets for VAERS reports which have been identified as CJD - those where the RECVDATE is before 15th Nov 2022 (around the date the writeups were purged) and those where the RECVDATE is after 15th Nov 2022.

There are 56 reports prior to 15th Nov 2022 (old dataset) and 12 reports after 15th Nov 2022 (new dataset).

Remember, almost 50% of foreign VAERS reports do not translate the age field into the CSV file even though the writeup mentions the age.

Why is the age field missing in so many foreign VAERS reports?

So with that in mind, let us look at the two datasets.

In the case of the old dataset, I also read the SYMPTOM_TEXT field from the old CSV file (which still did not delete the write-up) to derive the age from the writeup if it is available.

Click here to see the old CJD dataset

There are a total of 56 reports.

Of those, 35 of them are missing the AGE_YRS value.

But you can derive the age for 33 of these reports using the writeup.

Since the new dataset (reports with RECVDATE after 15th Nov 2022) does not include the write-up, there is no way to infer the ages for these reports.

Click here to see the new CJD dataset

As you can see, of the 12 rows, 8 are missing the age field.

Let us take a look at the NUMDAYS field - the time between vaccination date and date of symptom onset. This can only be calculated if both vaccination date and symptom onset date is known. If one of them (or both) is missing, the NUMDAYS value is empty.

For the old dataset, 40 out of 56 reports (71.42%) have a value.

For the new dataset, only 5 out of 12 (41.7%) have a value.

Summary

The sample size is quite small, but the drop in quality of foreign VAERS report is concerning when the disease is as dangerous as CJD, which has a very high mortality rate.