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← Return to COVID vaccines and neuropathy
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Thank you, Colleen. That is very reassuring.
I would like to point out that VAERS might have been a good idea at one time, but it has become a repository of useless data. Anyone can report anything and they do just that. In fact, anti-vaxxers are probably flooding it with false reports. The noise-to-signal ratio is such that it is virtually useless as a research tool. The reports themselves are not vetted, and, as CDC states in a prominent disclaimer, they "may include incomplete, inaccurate, coincidental and unverified information."
People may misinterpret VAERS, which is easily searchable, as a catalog of actual side effects, rather than possible or suspected ones. And it's easy to pull data out of context. "For those who are out to scare, there's a lot of material there," says Heidi Larson, director of the Vaccine Confidence Project at the London School of Hygiene & Tropical Medicine.
The other problem is that it isn't a database of all people who had X vaccine. Hundreds of millions have had any one vaccine but the only people who report to VAERS are those who think they may have had an adverse reaction. So the nmbers are basically meaningless. Say 20,000 people report what they think is an adverse reaction to the flu vaccine and (if anyone were to assess each of those reports, which they don't) it turns out that only 1300 could be medically attributed to the vaccine. The rate is not 13,00/20,000. The rate is 1300/hundreds of millions.
And no matter how many times you say it, people can't get through their heads that correlation (even if statistically significant, which it rarely is in VAERS) is not causation.
As you said, "People who don't experience adverse events tend not to participate in forums because they are not looking for support and solutions." It is just the same with VAERS.
And the fact that this forum is hosted by the Mayo Clinic may give the false impression that the information offered by an individual is somehow endorsed by a highly respected medical institution.
From the very soggy East Coast,
Ellen
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Ellen -
It’s really hard to argue with what you’re saying. Having idiopathic neuropathy for 6 years, over that time, I’ve had ideas I’ve thrown out at my doctors for things to test because I “felt” there could be a correlation worth checking (uti at exact time of my sudden crippling neuropathy, lower back pain ever since, working at a (now) US EPA Superfund Site for mercury contamination for 13 years, a cancer I was later discovered to have etc etc) Most suggestions I had were dismissed right off the tops of their heads without data or even making their visit notes, telling me it was all coincidental while not being able to offer cause ideas of their own. It’s been frustrating. I am very happy to report that I never had a change in my neuropathy after the vaccines and boosters, nor have I had Covid. (And of course my happy news of that doesn’t go into VAERS)
You’re right, VAERS only captures adverse reactions people think they MAY have had, and isn’t in the same database as total population that received it, so scientists could never use that data alone as statistical evidence. However, I’m a firm believer of “where there’s smoke there’s often a fire”. I do not have data, but I have to believe a whole lot of people started getting sick (and dying) in different parts of the world with something unusual with very similar symptoms (not identical) for a bit of time before somehow enough data reached a high enough level of authority to make someone realize there was Covid going on out here. The system of collecting that “data” to realize something big was (and had been) going on wasn’t VAERS of course, and I’m sure the first of the many people going to doctors and getting sick (and the families of those who died) were frustrated as heck to not have a clue of what the illness was early on and how to treat it, and how to stop spreading it . Many probably felt dismissed by their doctors. Now look at how long they searched backward (and may be still searching) for “Patient Zero”. Most of us with idiopathic disease feel the same way) But somehow enough “events” surfaced to put the world on notice that something terrible was going on and all hands on deck were needed to help understand this terrible Covid thing and to help stop it.
So I personally see the benefit of VAERS - it’s a collection of unproven ideas, but at least it’s a system! I don’t know how many people get sick or die eating salmonella on their sprouts before companies issue a product recall, but I doubt it’s not from an organized database. I’m hoping that with VAERS, even if filled with some biased and tainted reporting, that educated scientists see enough smoke at times to determine there might be a fire; then of course they’d use proper data collection and statistical analysis to see if major research should be allocated to testing the theory and solve if it’s warranted. So I’m just suggesting that any database is good and I’m trusting that the educated know how to use it.
Many of us with idiopathic PN probably wish there was a formal system of collecting our ideas so maybe enough smoke can be seen to put tons of resources on it to put out our fires.
Debbie (drying out in the Carolina’s)