PVS: Post Vaccination Syndrome (6 Viewers)

[Joe Bryant]

One of the first posts in this thread was "Antivax conspiracy nuts feel emboldened now I guess".

Do you feel that was in response to someone "just asking questions?"

I feel it was someone who was asking if we could please talk about it.

Based on my experience on this forum and in the rest of the world, I wasn't at all surprised to see them quickly called an "antivax conspiracy nut".

I'd love for the world to be as you described and people don't use labels to smear this way.

That's just not been my experience here.

And it's why we have moderators and one reason I think our forum is a pretty good place.

 

[Sparky Polastri]

n regards to your first edit, I don't make anything of it. It does nothing to suggest that clotting was a cause of your symptoms.

At best the paper shows there is a mild association for people who are admitted with COVID having an elevation in this particular lab test

These will likely seem like familiar comments. I said the same thing up thread. These elevations in levels indicate activity in the body. They speak NOTHING to the causes of why that activity was necessary or why they are elevated. With documents like this there is almost always an unaddressed causation vs correlation issue.

 

[Sparky Polastri]

Based on my experience on this forum and in the rest of the world, I wasn't at all surprised to see them quickly called an "antivax conspiracy nut".

Might I ask why you weren't surprised?

 

[Joe Bryant]

Based on my experience on this forum and in the rest of the world, I wasn't at all surprised to see them quickly called an "antivax conspiracy nut".

Might I ask why you weren't surprised?

Because I've seen it before.

 

[jhib]

One of the first posts in this thread was "Antivax conspiracy nuts feel emboldened now I guess".

Do you feel that was in response to someone "just asking questions?"

I feel it was someone who was asking if we could please talk about it.

Based on my experience on this forum and in the rest of the world, I wasn't at all surprised to see them quickly called an "antivax conspiracy nut".

I'd love for the world to be as you described and people don't use labels to smear this way.

That's just not been my experience here.

And it's why we have moderators and one reason I think our forum is a pretty good place.

It's an awesome place, really. And we all have you to thank for that, so thank you. Sincerely, thank you.

And thank you for providing some context I wasn't in position to see.

One of the results of this being such a good place is that we have so many long-term posters (and observers/"lurkers") here. There are well-established posting histories and reputations that come with it, and a sort of institutional knowledge so to speak such that individual threads don't exist in a vacuum.

So, although that post wasn't mine and I find it too strong/harsh for my taste, I imagine the poster was probably experienced with the OP and had good reason to think the opening wasn't just an innocent request, even from the first post. The OP's second post ("turbo cancer") only reinforces that line of thinking.

So while I see how someone could look at your example and come away with the idea that anyone who simply asks questions or brings up topics of discussion is labeled as anti-vax, I don't think that's a valid conclusion based on the context.

I hope that at least helps to clarify why I balk at the idea both you and MoP have expressed, even if you think I'm harping on an insignificant or tangential issue.

 

[LawFitz]

What do you think should happen to people like me? Just suffer without seeking help and then when i find it decline because there isn't a decade of research for a condition less than 5 years old?

Plus there are strong Profiteering, Political and Psychological components still actively at play, which collectively hamper any momentum toward 'acceptable' research on the mechanisms for Covid-vax injuries.

 

[Sparky Polastri]

Based on my experience on this forum and in the rest of the world, I wasn't at all surprised to see them quickly called an "antivax conspiracy nut".

Might I ask why you weren't surprised?

Because I've seen it before.

Right. That's a given. I'm more wondering if you've considered why they were quick to act that way.

Maybe a better question is if you read the OP and if you did, what your reaction to the content and approach was?

 

[Sparky Polastri]

n regards to your first edit, I don't make anything of it. It does nothing to suggest that clotting was a cause of your symptoms.

At best the paper shows there is a mild association for people who are admitted with COVID having an elevation in this particular lab test

These will likely seem like familiar comments. I said the same thing up thread. These elevations in levels indicate activity in the body. They speak NOTHING to the causes of why that activity was necessary or why they are elevated. With documents like this there is almost always an unaddressed causation vs correlation issue.

It's it possible these elevations are clues? What do you think should happen to people like me? Just suffer without seeking help and then when i find it decline because there isn't a decade of research for a condition less than 5 years old? I understand you guys want hard irrefutable evidence, but there isn't any.

I'm not sure why you keep lumping me in with everyone else with the "you guys" stuff. I've treated our interactions very different than just about everyone else in this thread.

The elevations aren't clues. They are telling you exactly what your body is doing. The WHY behind it though is always the next question to be answered and that's where this discussion goes off the tracks. People immediately jump to a correlation that might or might not be true but they present it as true. That isn't an honest approach to this convo IMO.

Take a popular problem of low vitamin D or B12 or whatever. That test tells you exactly that you are deficient. It's not a clue. It just is. There are a bunch of reasons this could be, so the next step is to look at all those reasons and start looking at them and what happens when you alter thise factors etc.

Again, hundreds of studies are being done around the world to figure this out. You were part of the process. You aren't all that different from those who signed up to be part of the testing when these drugs first came out. You're being active in trying to help with the research. That's a good thing.

 

[Joe Bryant]

One of the first posts in this thread was "Antivax conspiracy nuts feel emboldened now I guess".

Do you feel that was in response to someone "just asking questions?"

I feel it was someone who was asking if we could please talk about it.

Based on my experience on this forum and in the rest of the world, I wasn't at all surprised to see them quickly called an "antivax conspiracy nut".

I'd love for the world to be as you described and people don't use labels to smear this way.

That's just not been my experience here.

And it's why we have moderators and one reason I think our forum is a pretty good place.

It's an awesome place, really. And we all have you to thank for that, so thank you. Sincerely, thank you.

And thank you for providing some context I wasn't in position to see.

One of the results of this being such a good place is that we have so many long-term posters (and observers/"lurkers") here. There are well-established posting histories and reputations that come with it, and a sort of institutional knowledge so to speak such that individual threads don't exist in a vacuum.

So, although that post wasn't mine and I find it too strong/harsh for my taste, I imagine the poster was probably experienced with the OP and had good reason to think the opening wasn't just an innocent request, even from the first post. The OP's second post ("turbo cancer") only reinforces that line of thinking.

So while I see how someone could look at your example and come away with the idea that anyone who simply asks questions or brings up topics of discussion is labeled as anti-vax, I don't think that's a valid conclusion based on the context.

I hope that at least helps to clarify why I balk at the idea both you and MoP have expressed, even if you think I'm harping on an insignificant or tangential issue.

Thanks for the kind words.

We can disagree on how posts are interpreted and we can disagree with how people are labeled. I've thought a lot about it and have a lot of experience with the forums. I've also seen it in real life.

Basically, I don't like to see free speech stifled or people fearful to share things they think. Or things they have questions about. And I think we have that in our society and also here.

I understand you disagree and that's fine.

 

[Battersbox]

I would like to see research on just potential vaccine damage rather than long covid though.

Good luck. This would require finding people who have gotten the vaccines and never had COVID and enough of them to be able to get meaningful measures.

I hope the irony of just how spectacularly the vaccines failed to prevent EVERYONE from contracting the virus prevents us from having a control group isn't lost on anyone.

Well, this isn't true either. Originally, they were 90%+ effective, in line with all other vaccines. Then mutations happened and happened and happened. You'd need new vaccines for the mutations and it seems like that'd be tough for a lot of you to accept. Imagine coming out with ANOTHER mRNA vaccine with the amount of people who still insist that this one is more harmful than helps. Boosters kept you out of the hospital, so that was good enough to get through the pandemic.

It is true. We were supposed to have beaten Covid with the vaccines. We didn't, not by a long shot.

Vaccine uptake declined rapidly year over year over year. Most people don't bother to get it because it doesn't work, not because they think it causes Turbo Cancer or anything else.

Your mental gymnastics will not change the past.

Please point the parts of the comments you quoted that are incorrect? Do you really believe the subset of people who are unwilling to take vaccines would take a booster? The rest is documented fact so I assume that's the part you take issue with.

You said the vax was 90% effective. It may have been 90% effective in testing, but in practice it wasn't even close to that. By the time the general population got the vaccines in their arms in Spring 2021, it was not nearly 90% effective. which is why 70% of cases that summer were 'breakthrough'.

It didn't work. It was a vaccine that targeted an earlier form of the virus and the stated goal of 'beating' covid didn't happen--the virus changed too quickly. Put simply, we were told to get a shot and we'd beat Covid. Instead, many/most of us got the shot and got Covid anyway. That's an undeniable fact. The early testing with the control group that was allegedly 95% effective is absolutely irrelevant...the shots came too late.

The boosters have nothing to do with this either. People got the first two shots in March/April 2021, then contracted Covid later that year anyway, before they could even have chosen to get a booster. This happened all over the place. The vaccines didn't do what was promised, not even close.

We are clearly living in two different worlds. I don't know where the bold came from, but the goal in the world of science and those engineering vaccines was to minimize deaths and hospitalizations. Using language like you do here makes me wonder if you were listening a bit too much to the political talking heads and those appointed by the political talking heads. I really wish JMU had their dashboard up for historical purposes. The reality was very different. These vaccines did wonders through the most violent and dangerous strands (like Delta). They did what they were supposed to do.

Perhaps you're too young to remember where the bolded came from. Your Dad would remember though.

If you are saying politicians oversold what the vaccines would do, I can get on board with that. But, it wasn't just politicians: go check out what reps from Pfizer and Moderna were saying, then come back to us. Heck, put in minimal effort and you'll find several claims from Fauci himself that implied strongly these vaccines would do more than they did.

I don't know why you want to defend these vaccines to the end. Perhaps they are an incremental step forward in medicine (I sure hope they are), but they didn't do what Pifizer, Moderna, government officials, and myriad people form your stated 'world of science' said they'd do.

My first lab assignment was given me in July 2020. We were looking at impacts of the cirus on the heart. Was around for the whole event.

I'd be a fool to think that the politicians and drug execs wouldn't be trying to sell their product. Why would I expect any less? I also have no idea why anyone would be putting stock in what they were saying. "Consider the source" seems wholly appropriate here.

Conflating that with the scientists doing the work in the labs and research facilities is something I'll always push back on because it's completely wrong to do so and a HUGE part of why the distrust exists today.

You're saying Pfizer/Moderna/JNJ and the like don't have real scientists in the lab? Of course they do. They may have different motivations, but they are real.

The consensus from most walks of science was that these vaccinations would do far more than they did. If you knew better, thumbs up to you, but you were in the minority.

 

[Battersbox]

I mean, I guess we can go back and forth about the messaging surrounding the vaccines early on and whether the vaccines lived up to what some felt was promised, but it's still widely accepted that, in the words of the Yale scientists in the study by the OP,
"COVID-19 vaccines have prevented millions of COVID-19 deaths." Sounds like it worked for something.

Yes, I agree there may be a net benefit for what we did. My point is that it's a shame we'll never really know if the benefit outweighed the relative damage some folks are experiencing from the vaccine itself. The very fact that we don't have a viable control group to study vax injury because virtually everyone got Covid anyway is to me quite ironic.

I'm not sure that's entirely true. I would think there would be value in comparing rates of various outcomes between unvaccinated having had Covid and vaccinated having had Covid, controlling for numbers of exposures and other potential variables. Or maybe I'm misunderstanding your point.

I tend to lean toward the side of yes, there was probably a net benefit. Maybe. But I'll also say I don't know anyone who died from Covid, but I do know several folks who say they are suffering from vax injury of varying degrees. I'm lucky enough that I took the shots and 1 booster and I don't think it damaged me in any way.

And I don't know anyone personally who says they are suffering from vaccination injury in any way, and I definitely don't know anyone who died from Covid, even though I have a decent number of elderly family members who could have been at a heightened risk. I'd also acknowledge that my limited experience is insignificant when talking about population matters like Covid, just a few data points among millions and millions.

We failed to control for 'other variables' when studying effects of vaccines and other measures throughout the pandemic.

And of course our own personal, anecdotal experience is irrelevant.

 

[jhib]

Basically, I don't like to see free speech stifled or people fearful to share things they think. Or things they have questions about. And I think we have that in our society and also here.

I understand you disagree and that's fine.

To be clear on my end, I actually don't disagree with that. At all.

What I understand as our disagreement is what kinds of things result in stifled free speech or people fearful to share things they think.

[edited out to be more concise]
[and then edited to add the following instead of replying to myself...]

To add on to the stifling of free speech... I believe free speech should not be stifled. I believe people can say what they want, and others' response to what they say should not be stifled. So when potentially dangerous, scientifically unsupported misinformation or disinformation is stated as opinion or fact without support, it should be called out as such. When there is a pattern of that type on the subject of vaccines from one individual or group of individuals, "anti-vaxxer" is used as a shorthand by those doing the calling out. It's meant to be efficient and informational, not free-speech-stifling.

 

[jhib]

I mean, I guess we can go back and forth about the messaging surrounding the vaccines early on and whether the vaccines lived up to what some felt was promised, but it's still widely accepted that, in the words of the Yale scientists in the study by the OP,
"COVID-19 vaccines have prevented millions of COVID-19 deaths." Sounds like it worked for something.

Yes, I agree there may be a net benefit for what we did. My point is that it's a shame we'll never really know if the benefit outweighed the relative damage some folks are experiencing from the vaccine itself. The very fact that we don't have a viable control group to study vax injury because virtually everyone got Covid anyway is to me quite ironic.

I'm not sure that's entirely true. I would think there would be value in comparing rates of various outcomes between unvaccinated having had Covid and vaccinated having had Covid, controlling for numbers of exposures and other potential variables. Or maybe I'm misunderstanding your point.

I tend to lean toward the side of yes, there was probably a net benefit. Maybe. But I'll also say I don't know anyone who died from Covid, but I do know several folks who say they are suffering from vax injury of varying degrees. I'm lucky enough that I took the shots and 1 booster and I don't think it damaged me in any way.

And I don't know anyone personally who says they are suffering from vaccination injury in any way, an

We failed to control for 'other variables' when studying effects of vaccines
And of course our own personal, anecdotal experience is irrelevant.

I mean, I guess we can go back and forth about the messaging surrounding the vaccines early on and whether the vaccines lived up to what some felt was promised, but it's still widely accepted that, in the words of the Yale scientists in the study by the OP,
"COVID-19 vaccines have prevented millions of COVID-19 deaths." Sounds like it worked for something.

Yes, I agree there may be a net benefit for what we did. My point is that it's a shame we'll never really know if the benefit outweighed the relative damage some folks are experiencing from the vaccine itself. The very fact that we don't have a viable control group to study vax injury because virtually everyone got Covid anyway is to me quite ironic.

I'm not sure that's entirely true. I would think there would be value in comparing rates of various outcomes between unvaccinated having had Covid and vaccinated having had Covid, controlling for numbers of exposures and other potential variables. Or maybe I'm misunderstanding your point.

I tend to lean toward the side of yes, there was probably a net benefit. Maybe. But I'll also say I don't know anyone who died from Covid, but I do know several folks who say they are suffering from vax injury of varying degrees. I'm lucky enough that I took the shots and 1 booster and I don't think it damaged me in any way.

And I don't know anyone personally who says they are suffering from vaccination injury in any way, and I definitely don't know anyone who died from Covid, even though I have a decent number of elderly family members who could have been at a heightened risk. I'd also acknowledge that my limited experience is insignificant when talking about population matters like Covid, just a few data points among millions and millions.

We failed to control for 'other variables' when studying effects of vaccines and other measures throughout the pandemic.

And of course our own personal, anecdotal experience is irrelevant.

1st part - Even assuming that's true, it doesn't mean it can't be done. But yeah, I agree it's all very difficult.
2nd - I'm glad we agree on that. I don't think/assume everyone does, which is why I added that last sentence.

 

[Joe Bryant]

Basically, I don't like to see free speech stifled or people fearful to share things they think. Or things they have questions about. And I think we have that in our society and also here.

I understand you disagree and that's fine.

To be clear on my end, I actually don't disagree with that. At all.

What I understand as our disagreement is what kinds of things result in stifled free speech or people fearful to share things they think.

1) Referring to someone who is sincerely simply asking questions as anti-vax
2) Referring to someone who does all the things I pointed out here as anti-vax (with sufficient support) even when that person poses as someone just asking questions
3) Equating the above two situations and implying that anyone who simply asks questions does/will get referred to as anti-vax

I think that 1 & 3 are most likely have the result we are both trying to avoid. I think 2 should not have that result, but if it does, it is the fault of the one doing the posing rather than the one using the term. And the one using the term should weigh that potential result against the benefit of calling out actual anti-vax disinformation.

I gather you disagree (please correct me if not) and that's fine.

I'm not sure I understand all the conditions there.

But I do think we have an environment, both here and everywhere, where questions about vaccines are frowned upon.

I also find people seem to think they know what the person really means when they ask questions or share experiences or opinions and add extra meaning or emphasis that's not actually said. And i think putting words into someone's mouth and assuming they mean something different than they said can be problematic.

It's not particularly unique. For instance, I know some religious environments are like that where questions are not welcome. I don't think they're particularly healthy, but they exist.

As it relates to here, which is what I'm concerned about in this discussion, I want us to have a place where we lean toward being more inclusive. And yes, I get there are limits.

And apologies for the side track. That just lent an outlet to talk on a tangent for a bit. That's enough from me there for now.

 

[Sparky Polastri]

You're saying Pfizer/Moderna/JNJ and the like don't have real scientists in the lab? Of course they do. They may have different motivations, but they are real.

The consensus from most walks of science was that these vaccinations would do far more than they did. If you knew better, thumbs up to you, but you were in the minority.

To the first question "no". I don't even know what to do with that or where it came from.

To the second statement its inaccurate. They had NO IDEA how they would handle mutations they weren't created for and they were pleasantly surprised that they performed as well as they did.

 

[Battersbox]

You're saying Pfizer/Moderna/JNJ and the like don't have real scientists in the lab? Of course they do. They may have different motivations, but they are real.

The consensus from most walks of science was that these vaccinations would do far more than they did. If you knew better, thumbs up to you, but you were in the minority.

To the first question "no". I don't even know what to do with that or where it came from.

To the second statement its inaccurate. They had NO IDEA how they would handle mutations they weren't created for and they were pleasantly surprised that they performed as well as they did.

NO. Pfizer said their vax would be 95% effective. Moderna said similar. Fauci et. al. said 70% vax rate + infections would get us to herd immunity. To be fair, he changed that estimate several times and finally admitted he sort of lied about it in the beginning, but that's neither here nor there.

To Joe's point, if we question the vaccinations at all, people come out of the woodwork and rewrite history about several things. Heck, I don't even think the vaccines were particularly damaging, just ineffective---that alone puts people right on the defensive, which leads to examples like your response where your actually saying the vaccines worked even better than hoped.

We're on different planets.

 

[Mitchie]

You're saying Pfizer/Moderna/JNJ and the like don't have real scientists in the lab? Of course they do. They may have different motivations, but they are real.

The consensus from most walks of science was that these vaccinations would do far more than they did. If you knew better, thumbs up to you, but you were in the minority.

To the first question "no". I don't even know what to do with that or where it came from.

To the second statement its inaccurate. They had NO IDEA how they would handle mutations they weren't created for and they were pleasantly surprised that they performed as well as they did.

NO. Pfizer said their vax would be 95% effective. Moderna said similar. Fauci et. al. said 70% vax rate + infections would get us to herd immunity. To be fair, he changed that estimate several times and finally admitted he sort of lied about it in the beginning, but that's neither here nor there.

To Joe's point, if we question the vaccinations at all, people come out of the woodwork and rewrite history about several things. Heck, I don't even think the vaccines were particularly damaging, just ineffective---that alone puts people right on the defensive, which leads to examples like your response where your actually saying the vaccines worked even better than hoped.

We're on different planets.

Pfizer/BioNTech’s vaccine was reported as being 95% effective. This number is not your chance of staying Covid-free after vaccination: rather, it estimates how much your chance rises relative to not being vaccinated. With the vaccine, your chance of staying Covid-free is in fact 99.96%.​

What does 95% effective mean for a Covid-19 vaccine? - Economics Observatory

On 9 November 2020, the world woke to the uplifting news that a safe and effective vaccine for Covid-19 was within reach.

www.economicsobservatory.com

 

[Sparky Polastri]

You're saying Pfizer/Moderna/JNJ and the like don't have real scientists in the lab? Of course they do. They may have different motivations, but they are real.

The consensus from most walks of science was that these vaccinations would do far more than they did. If you knew better, thumbs up to you, but you were in the minority.

To the first question "no". I don't even know what to do with that or where it came from.

To the second statement its inaccurate. They had NO IDEA how they would handle mutations they weren't created for and they were pleasantly surprised that they performed as well as they did.

NO. Pfizer said their vax would be 95% effective. Moderna said similar. Fauci et. al. said 70% vax rate + infections would get us to herd immunity. To be fair, he changed that estimate several times and finally admitted he sort of lied about it in the beginning, but that's neither here nor there.

To Joe's point, if we question the vaccinations at all, people come out of the woodwork and rewrite history about several things. Heck, I don't even think the vaccines were particularly damaging, just ineffective---that alone puts people right on the defensive, which leads to examples like your response where your actually saying the vaccines worked even better than hoped.

We're on different planets.

They hit this mark vs Alpha (47%/95%) variant and Delta variant at (30%/95%) with BOTH shots. I don't really remember about the herd immunity talk and I'll take your word for what Fauci said. I don't really know what he said about a lot of it honestly (remember what I said above several times with listening to politicians and those appointed by them). That's not the topic of this thread. As the mutations came out I am unaware of any science saying they would, for certain, hold that sort of success. As a matter of fact, these vaccines were tested against all the new strains to see if a new vaccine was necessary and they were deemed sufficient to get us out of the situation we were in with hospitalizations and deaths even though their success rates and longevity decreased with several of the mutations. I will also point out they did NOT say "worked even better than hoped" because they didn't know how they would work and that's not how they approached it. They WERE pleasantly surprised they worked as well as they did given no significant upgrades. They ALL said if there are major changes in the spike protein a new vaccine would be necessary. Fortunately, that hasn't happened yet.

ETA: "They" as I am using it, are the scientists in the lab doing the testing and research used by the pharma companies to monetize the solution, not politicians and political appointees or pharma sales people/board members. Hopefully, by now, it's clear I have a low opinion of most of them and listen very little to what they are saying.

 

[MTskibum]

Of course, I'm not as involved as some on here, so I could have missed it. And I can't judge things that are deleted by moderators before most of us can see it. But I did see a lot of conversations on here about the topic and I've never noticed anyone being called anti-vax the second they ask questions.

Correct. There's a lot of posts that most people don't see.

One of the first posts in this thread was "Antivax conspiracy nuts feel emboldened now I guess".

It was removed.

It's been my experience on our forums and in the rest of the world that people who question vaccines are often labeled "anti-vaxxers" in order to denigrate or dismiss them. That's hardly a hot take.

In the same way, as happened here, people can also be smeared who are pro vaccine and called "boot lickers" or other things.

As I said earlier, I don't think either labels are helpful and I'd rather the focus be on discussion and not diminishing either side with perjorative labels.

I think this was me, but it was only related to the turbo cancer in post 2.

Later on, due to other posting/posters, i may have went overboard in my turbo-cancer posting.

I really do apologize for that and nobody else should suffer because I went on a crazy spree.

 

[Joe Bryant]

Of course, I'm not as involved as some on here, so I could have missed it. And I can't judge things that are deleted by moderators before most of us can see it. But I did see a lot of conversations on here about the topic and I've never noticed anyone being called anti-vax the second they ask questions.

Correct. There's a lot of posts that most people don't see.

One of the first posts in this thread was "Antivax conspiracy nuts feel emboldened now I guess".

It was removed.

It's been my experience on our forums and in the rest of the world that people who question vaccines are often labeled "anti-vaxxers" in order to denigrate or dismiss them. That's hardly a hot take.

In the same way, as happened here, people can also be smeared who are pro vaccine and called "boot lickers" or other things.

As I said earlier, I don't think either labels are helpful and I'd rather the focus be on discussion and not diminishing either side with perjorative labels.

I think this was me, but it was only related to the turbo cancer in post 2.

Later on, due to other posting/posters, i may have went overboard in my turbo-cancer posting.

I really do apologize for that and nobody else should suffer because I went on a crazy spree.

No worries. We're back on track now.

 

[MTskibum]

Just to clarify why I went overboard to the group. I was having a bad week last week.

Someone who should have no say in my engineers started emailing me Friday wanting to run off my engineers and replace them with accenture entry level developers. On saturday I was going to take my kids fishing, i went to pickup the boat from the mechanics with my kids, i launch the boat and then find out the mechanics didn't even get to work on the boat yet. We are talking 2 hours of round trip driving with young kids for nothing, etc.

But then what got me in this thread is that years ago i used to talk hunting and fishing with someone on the internet. This person was an internet friend for close to a decade before they disappeared a couple years ago. I thought i recognized that posters tendencies in the longtime lurker and because of everything else going on, i got irrationally upset that someone who i thought was an internet friend was now going to post under an alias.

Normally, I would have dealt with that better, but just in general because i was in such a crappy mood late last week kind of pushed me over the edge.

I can go years on the internet without a breakdown, but when I do.....

 

[Joe Bryant]

Just to clarify why I went overboard to the group. I was having a bad week last week.

Someone who should have no say in my engineers started emailing me Friday wanting to run off my engineers and replace them with accenture entry level developers. On saturday I was going to take my kids fishing, i went to pickup the boat from the mechanics with my kids, i launch the boat and then find out the mechanics didn't even get to work on the boat yet. We are talking 2 hours of round trip driving with young kids for nothing, etc.

But then what got me in this thread is that years ago i used to talk hunting and fishing with someone on the internet. This person was an internet friend for close to a decade before they disappeared a couple years ago. I thought i recognized that posters tendencies in the longtime lurker and because of everything else going on, i got irrationally upset that someone who i thought was an internet friend was now going to post under an alias.

Normally, I would have dealt with that better, but just in general because i was in such a crappy mood late last week kind of pushed me over the edge.

I can go years on the internet without a breakdown.

All good here, GB. Hope other stuff gets back to normal.

 

[turnjose7]

I don't think we got off on the wrong foot. As I have said, I'm sorry you went through a difficult time and I wish you the best.

The AI answer does a great job demonstrating how much of the "research" people throw out about both COVID and vaccines is meaningless. You asked the AI (which is itself a misnomer, but that's a completely different topic) if TAT is useful clinically. It says yes, and then it proceeds to give a bunch of information that is non-clinical. The only part of the response that is even remotely clinical is "potentially guide treatment decisions, especially in critical care or during surgery" which it does not provide details about and which I am not sure is true. I've spent a lot of time in ICUs and never seen the test ordered. I guess it's possible it is used intra-operatively to guide some decisions but I would need to see more details about that as it has been a long time since I was a resident and spent time in an OR.

What this also comes down to is that there is a difference between bench medicine and actual clinical medicine. What the AI is describing is mostly biochemistry, not clinical medicine. It talks about blood levels and expected test responses, but nothing about clinical outcomes for patients. Researchers make all kinds of predictions about all kinds of things - the effects of medications, the performance of diagnostics test - based on laboratory medicine, molecular biology, physiology, etc. Many of the predictions seem to have a logical basis. Then when you actually go to use them in a clinical setting, it is uncommon (as in almost never) for the clinical results to line up with the predictions based on bench science.

Take as an example, steroids. We understand the biochemistry of steroids very well. We know they are immunosuppressants, and can measure their physiologic effects on multiple aspects of the immune response extremely well. It makes 100% complete sense that steroids would be a good medication for treating type 1 hypersensitive reactions (this is what most people think of as an "allergic reaction" - you eat peanuts and break out in hives). Based on our knowledge the the biochemistry and physiology, it is almost impossible to believe that steroids would not be a great treatment for allergic reactions. But if you look at the clinical data, it is quite apparent that the is no benefit at all to giving steroids in this setting. In fact, when you consider the adverse effects of steroids, it is almost certainly harmful. Many physicians traditionally have, and some still do, give steroids in this setting because it makes so much physiologic sense and unfortunately we did not have the clinical data to prove it wrong until recently. But now we do have the data, and fortunately the pendulum is starting to swing to people avoiding this treatment.

As in this example, clinical medicine tends to lag behind bench medicine in most (but not all) cases. There is an entire branch of science meant to bridge the gap: translational medicine.

Almost everything you have described in previous posts and almost everything in the AI answer is bench medicine. That doesn't mean it doesn't have value. It means that we don't know how to apply it clinically. And because more often than not the bench medicine is wrong in predicting the clinical effects, we need to be very careful extrapolating the latter from the former. That's why I said in a very controlled setting, it is reasonable to look at TAT to see if it has value. It is not reasonable to tell people to have their PCP order a TAT because that is not currently what it is used for.

 

[Joe Bryant]

I don't think we got off on the wrong foot. As I have said, I'm sorry you went through a difficult time and I wish you the best.

The AI answer does a great job demonstrating how much of the "research" people throw out about both COVID and vaccines is meaningless. You asked the AI (which is itself a misnomer, but that's a completely different topic) if TAT is useful clinically. It says yes, and then it proceeds to give a bunch of information that is non-clinical. The only part of the response that is even remotely clinical is "potentially guide treatment decisions, especially in critical care or during surgery" which it does not provide details about and which I am not sure is true. I've spent a lot of time in ICUs and never seen the test ordered. I guess it's possible it is used intra-operatively to guide some decisions but I would need to see more details about that as it has been a long time since I was a resident and spent time in an OR.

What this also comes down to is that there is a difference between bench medicine and actual clinical medicine. What the AI is describing is mostly biochemistry, not clinical medicine. It talks about blood levels and expected test responses, but nothing about clinical outcomes for patients. Researchers make all kinds of predictions about all kinds of things - the effects of medications, the performance of diagnostics test - based on laboratory medicine, molecular biology, physiology, etc. Many of the predictions seem to have a logical basis. Then when you actually go to use them in a clinical setting, it is uncommon (as in almost never) for the clinical results to line up with the predictions based on bench science.

Take as an example, steroids. We understand the biochemistry of steroids very well. We know they are immunosuppressants, and can measure their physiologic effects on multiple aspects of the immune response extremely well. It makes 100% complete sense that steroids would be a good medication for treating type 1 hypersensitive reactions (this is what most people think of as an "allergic reaction" - you eat peanuts and break out in hives). Based on our knowledge the the biochemistry and physiology, it is almost impossible to believe that steroids would not be a great treatment for allergic reactions. But if you look at the clinical data, it is quite apparent that the is no benefit at all to giving steroids in this setting. In fact, when you consider the adverse effects of steroids, it is almost certainly harmful. Many physicians traditionally have, and some still do, give steroids in this setting because it makes so much physiologic sense and unfortunately we did not have the clinical data to prove it wrong until recently. But now we do have the data, and fortunately the pendulum is starting to swing to people avoiding this treatment.

As in this example, clinical medicine tends to lag behind bench medicine in most (but not all) cases. There is an entire branch of science meant to bridge the gap: translational medicine.

Almost everything you have described in previous posts and almost everything in the AI answer is bench medicine. That doesn't mean it doesn't have value. It means that we don't know how to apply it clinically. And because more often than not the bench medicine is wrong in predicting the clinical effects, we need to be very careful extrapolating the latter from the former. That's why I said in a very controlled setting, it is reasonable to look at TAT to see if it has value. It is not reasonable to tell people to have their PCP order a TAT because that is not currently what it is used for.

What about just "useful" and not "clinically useful"?

Seems like this has moved into a parsing definitions thing.

I'm more interested in if things are useful. But I also know nothing of this particular area.

 

[TheAristocrat]

Which fish are you?

Take this test to find out! The results will surprise you!

 

[turnjose7]

I don't think we got off on the wrong foot. As I have said, I'm sorry you went through a difficult time and I wish you the best.

The AI answer does a great job demonstrating how much of the "research" people throw out about both COVID and vaccines is meaningless. You asked the AI (which is itself a misnomer, but that's a completely different topic) if TAT is useful clinically. It says yes, and then it proceeds to give a bunch of information that is non-clinical. The only part of the response that is even remotely clinical is "potentially guide treatment decisions, especially in critical care or during surgery" which it does not provide details about and which I am not sure is true. I've spent a lot of time in ICUs and never seen the test ordered. I guess it's possible it is used intra-operatively to guide some decisions but I would need to see more details about that as it has been a long time since I was a resident and spent time in an OR.

What this also comes down to is that there is a difference between bench medicine and actual clinical medicine. What the AI is describing is mostly biochemistry, not clinical medicine. It talks about blood levels and expected test responses, but nothing about clinical outcomes for patients. Researchers make all kinds of predictions about all kinds of things - the effects of medications, the performance of diagnostics test - based on laboratory medicine, molecular biology, physiology, etc. Many of the predictions seem to have a logical basis. Then when you actually go to use them in a clinical setting, it is uncommon (as in almost never) for the clinical results to line up with the predictions based on bench science.

Take as an example, steroids. We understand the biochemistry of steroids very well. We know they are immunosuppressants, and can measure their physiologic effects on multiple aspects of the immune response extremely well. It makes 100% complete sense that steroids would be a good medication for treating type 1 hypersensitive reactions (this is what most people think of as an "allergic reaction" - you eat peanuts and break out in hives). Based on our knowledge the the biochemistry and physiology, it is almost impossible to believe that steroids would not be a great treatment for allergic reactions. But if you look at the clinical data, it is quite apparent that the is no benefit at all to giving steroids in this setting. In fact, when you consider the adverse effects of steroids, it is almost certainly harmful. Many physicians traditionally have, and some still do, give steroids in this setting because it makes so much physiologic sense and unfortunately we did not have the clinical data to prove it wrong until recently. But now we do have the data, and fortunately the pendulum is starting to swing to people avoiding this treatment.

As in this example, clinical medicine tends to lag behind bench medicine in most (but not all) cases. There is an entire branch of science meant to bridge the gap: translational medicine.

Almost everything you have described in previous posts and almost everything in the AI answer is bench medicine. That doesn't mean it doesn't have value. It means that we don't know how to apply it clinically. And because more often than not the bench medicine is wrong in predicting the clinical effects, we need to be very careful extrapolating the latter from the former. That's why I said in a very controlled setting, it is reasonable to look at TAT to see if it has value. It is not reasonable to tell people to have their PCP order a TAT because that is not currently what it is used for.

What about just "useful" and not "clinically useful"?

Seems like this has moved into a parsing definitions thing.

I'm more interested in if things are useful. But I also know nothing of this particular area.

Not sure exactly what your asking, but if you are asking what clinically useful means, it refers to have demonstrable effects that improve clinically important outcomes. Lots of tests and treatments affect outcomes, but a much smaller subset actually affect outcomes that are clinically important (significant reductions in symptoms, improved mortality, decreased hospitalization, etc.).

I'm sure that TAT does give information about things like the effect of drugs on coagulation and fibrinolysis times. Does that translate into better clinical outcomes for patients? Probably not. At the very least, there isn't good evidence to demonstrate that it does.

Does that clarify?

 

[turnjose7]

I don't think we got off on the wrong foot. As I have said, I'm sorry you went through a difficult time and I wish you the best.

Thank you. I really do appreciate that.

I can understand my recommendation doesn't hold up under your medical scrutiny and as I'm not a doctor I won't fight someone that is on it. With all sincerity you are very correct that i shouldn't be giving any medical advice. I found your explanation fascinating and informative. Thank you for the detail.

Can I ask in a different way maybe? Or maybe we'll just keep going round and round, but that's not what i want at all. When there are no more medically tested and proven techniques such as in my case, would bench medicine make sense? They gave me many clinical medicine tests (hopefully I'm using this correctly, if not i hope you can understand what i do mean) and they showed no irregularities, but bench medicine did and if I'm understanding correctly that showed there was infact an issue even if the cause wasn't yet fully understood as to what that issue was. Is this reasonable? It was a way to determine i wasn't simply anxious and helped point to their hypothesis, but without proving that a lot of my symptoms were a result of being in a hypercoagulable state. Does that make sense? Even though there was no proof of an exact illness what it did show was that something in my body was acting in a way it normally wouldn't. Does that last sentence stand up in my particular experience, or is that still completely useless in your experience and under no circumstances offer anything of value even when more standardized testing is mostly in range?

Sorry if i was combative before, there's no need for that from me or anyone else. It's possible my doctors and you have very different reasons for saying what they do. Both correct depending on context possibly?

If you are asking if it is ever correct to enact a treatment plan (ordering a test, prescribing a medication) without having robust science supporting it's clinical benefit, the answer is yes. There are a lot of things that we do in medicine based on our understanding of basic sciences for which the clinical benefit hasn't been rigorously demonstrated that well.

However, one has to be very careful with this for a couple of reasons. First, as previously mentioned, we are not that good at predicting clinical benefit based on perceived physiologic benefit. Second, the overall preponderance of effects of most things in medicine (including both tests and medications) is that it is more harmful than helpful.

Consequently, the situations in which you would do something without the clinical evidence to support it are limited. Most often it is because the downsides of whatever is being made a part of the treatment plan is likely to be very low, even if we are wrong. It also might be appropriate to do it in a higher risk setting under certain circumstance like as a last ditch effort to prevent death (many of the cardiopulmonary resuscitation things we do along with CPR actually have very poor evidence, but make physiologic sense, and we do them because if we are wrong, you can't make things worse by making them more dead).

In terms of your case, I wasn't a physician who did a full assessment on you so I can't definitively say what aspects of your care were right or wrong. I have some concerns (d-dimer is an extremely well understood test that has much more robust clinical data than TAT, for instance, so when they conflict I really think that d-dimer is the test that should be leaned on more for clinical decisions). But I have less objection about the things that you did to try to help yourself. My objection is more about taking something that may have been a very niche situation for your and suggesting that it would be more reasonable for that to be widespread. The science doesn't support that and it could be harmful.

 

[Joe Bryant]

I don't think we got off on the wrong foot. As I have said, I'm sorry you went through a difficult time and I wish you the best.

The AI answer does a great job demonstrating how much of the "research" people throw out about both COVID and vaccines is meaningless. You asked the AI (which is itself a misnomer, but that's a completely different topic) if TAT is useful clinically. It says yes, and then it proceeds to give a bunch of information that is non-clinical. The only part of the response that is even remotely clinical is "potentially guide treatment decisions, especially in critical care or during surgery" which it does not provide details about and which I am not sure is true. I've spent a lot of time in ICUs and never seen the test ordered. I guess it's possible it is used intra-operatively to guide some decisions but I would need to see more details about that as it has been a long time since I was a resident and spent time in an OR.

What this also comes down to is that there is a difference between bench medicine and actual clinical medicine. What the AI is describing is mostly biochemistry, not clinical medicine. It talks about blood levels and expected test responses, but nothing about clinical outcomes for patients. Researchers make all kinds of predictions about all kinds of things - the effects of medications, the performance of diagnostics test - based on laboratory medicine, molecular biology, physiology, etc. Many of the predictions seem to have a logical basis. Then when you actually go to use them in a clinical setting, it is uncommon (as in almost never) for the clinical results to line up with the predictions based on bench science.

Take as an example, steroids. We understand the biochemistry of steroids very well. We know they are immunosuppressants, and can measure their physiologic effects on multiple aspects of the immune response extremely well. It makes 100% complete sense that steroids would be a good medication for treating type 1 hypersensitive reactions (this is what most people think of as an "allergic reaction" - you eat peanuts and break out in hives). Based on our knowledge the the biochemistry and physiology, it is almost impossible to believe that steroids would not be a great treatment for allergic reactions. But if you look at the clinical data, it is quite apparent that the is no benefit at all to giving steroids in this setting. In fact, when you consider the adverse effects of steroids, it is almost certainly harmful. Many physicians traditionally have, and some still do, give steroids in this setting because it makes so much physiologic sense and unfortunately we did not have the clinical data to prove it wrong until recently. But now we do have the data, and fortunately the pendulum is starting to swing to people avoiding this treatment.

As in this example, clinical medicine tends to lag behind bench medicine in most (but not all) cases. There is an entire branch of science meant to bridge the gap: translational medicine.

Almost everything you have described in previous posts and almost everything in the AI answer is bench medicine. That doesn't mean it doesn't have value. It means that we don't know how to apply it clinically. And because more often than not the bench medicine is wrong in predicting the clinical effects, we need to be very careful extrapolating the latter from the former. That's why I said in a very controlled setting, it is reasonable to look at TAT to see if it has value. It is not reasonable to tell people to have their PCP order a TAT because that is not currently what it is used for.

What about just "useful" and not "clinically useful"?

Seems like this has moved into a parsing definitions thing.

I'm more interested in if things are useful. But I also know nothing of this particular area.

Not sure exactly what your asking, but if you are asking what clinically useful means, it refers to have demonstrable effects that improve clinically important outcomes. Lots of tests and treatments affect outcomes, but a much smaller subset actually affect outcomes that are clinically important (significant reductions in symptoms, improved mortality, decreased hospitalization, etc.).

I'm sure that TAT does give information about things like the effect of drugs on coagulation and fibrinolysis times. Does that translate into better clinical outcomes for patients? Probably not. At the very least, there isn't good evidence to demonstrate that it does.

Does that clarify?

Not really. I'm asking if it's useful. I'm more interested in if things are useful.

And, of course, that turns into "useful for what?" exactly?

But thanks for the posts. They're interesting and thanks for sharing.

 

[turnjose7]

I don't think we got off on the wrong foot. As I have said, I'm sorry you went through a difficult time and I wish you the best.

The AI answer does a great job demonstrating how much of the "research" people throw out about both COVID and vaccines is meaningless. You asked the AI (which is itself a misnomer, but that's a completely different topic) if TAT is useful clinically. It says yes, and then it proceeds to give a bunch of information that is non-clinical. The only part of the response that is even remotely clinical is "potentially guide treatment decisions, especially in critical care or during surgery" which it does not provide details about and which I am not sure is true. I've spent a lot of time in ICUs and never seen the test ordered. I guess it's possible it is used intra-operatively to guide some decisions but I would need to see more details about that as it has been a long time since I was a resident and spent time in an OR.

What this also comes down to is that there is a difference between bench medicine and actual clinical medicine. What the AI is describing is mostly biochemistry, not clinical medicine. It talks about blood levels and expected test responses, but nothing about clinical outcomes for patients. Researchers make all kinds of predictions about all kinds of things - the effects of medications, the performance of diagnostics test - based on laboratory medicine, molecular biology, physiology, etc. Many of the predictions seem to have a logical basis. Then when you actually go to use them in a clinical setting, it is uncommon (as in almost never) for the clinical results to line up with the predictions based on bench science.

Take as an example, steroids. We understand the biochemistry of steroids very well. We know they are immunosuppressants, and can measure their physiologic effects on multiple aspects of the immune response extremely well. It makes 100% complete sense that steroids would be a good medication for treating type 1 hypersensitive reactions (this is what most people think of as an "allergic reaction" - you eat peanuts and break out in hives). Based on our knowledge the the biochemistry and physiology, it is almost impossible to believe that steroids would not be a great treatment for allergic reactions. But if you look at the clinical data, it is quite apparent that the is no benefit at all to giving steroids in this setting. In fact, when you consider the adverse effects of steroids, it is almost certainly harmful. Many physicians traditionally have, and some still do, give steroids in this setting because it makes so much physiologic sense and unfortunately we did not have the clinical data to prove it wrong until recently. But now we do have the data, and fortunately the pendulum is starting to swing to people avoiding this treatment.

As in this example, clinical medicine tends to lag behind bench medicine in most (but not all) cases. There is an entire branch of science meant to bridge the gap: translational medicine.

Almost everything you have described in previous posts and almost everything in the AI answer is bench medicine. That doesn't mean it doesn't have value. It means that we don't know how to apply it clinically. And because more often than not the bench medicine is wrong in predicting the clinical effects, we need to be very careful extrapolating the latter from the former. That's why I said in a very controlled setting, it is reasonable to look at TAT to see if it has value. It is not reasonable to tell people to have their PCP order a TAT because that is not currently what it is used for.

What about just "useful" and not "clinically useful"?

Seems like this has moved into a parsing definitions thing.

I'm more interested in if things are useful. But I also know nothing of this particular area.

Not sure exactly what your asking, but if you are asking what clinically useful means, it refers to have demonstrable effects that improve clinically important outcomes. Lots of tests and treatments affect outcomes, but a much smaller subset actually affect outcomes that are clinically important (significant reductions in symptoms, improved mortality, decreased hospitalization, etc.).

I'm sure that TAT does give information about things like the effect of drugs on coagulation and fibrinolysis times. Does that translate into better clinical outcomes for patients? Probably not. At the very least, there isn't good evidence to demonstrate that it does.

Does that clarify?

Not really. I'm asking if it's useful. I'm more interested in if things are useful.

And, of course, that turns into "useful for what?" exactly?

But thanks for the posts. They're interesting and thanks for sharing.

Sorry, I thought that's what I answered. What I was trying to say is that useful in the sense that we think of it generally means improving clinically significant outcomes like the ones I mentioned (things like symptoms and life expectancy). And to some extent healthcare resource utilization also gets rolled into that.

Would you define it differently?

If you go by that definition, there isn't good evidence that TAT is useful.

 

[Joe Bryant]

I don't think we got off on the wrong foot. As I have said, I'm sorry you went through a difficult time and I wish you the best.

Thank you. I really do appreciate that.

I can understand my recommendation doesn't hold up under your medical scrutiny and as I'm not a doctor I won't fight someone that is on it. With all sincerity you are very correct that i shouldn't be giving any medical advice. I found your explanation fascinating and informative. Thank you for the detail.

Can I ask in a different way maybe? Or maybe we'll just keep going round and round, but that's not what i want at all. When there are no more medically tested and proven techniques such as in my case, would bench medicine make sense? They gave me many clinical medicine tests (hopefully I'm using this correctly, if not i hope you can understand what i do mean) and they showed no irregularities, but bench medicine did and if I'm understanding correctly that showed there was infact an issue even if the cause wasn't yet fully understood as to what that issue was. Is this reasonable? It was a way to determine i wasn't simply anxious and helped point to their hypothesis, but without proving that a lot of my symptoms were a result of being in a hypercoagulable state. Does that make sense? Even though there was no proof of an exact illness what it did show was that something in my body was acting in a way it normally wouldn't. Does that last sentence stand up in my particular experience, or is that still completely useless in your experience and under no circumstances offer anything of value even when more standardized testing is mostly in range?

Sorry if i was combative before, there's no need for that from me or anyone else. It's possible my doctors and you have very different reasons for saying what they do. Both correct depending on context possibly?

If you are asking if it is ever correct to enact a treatment plan (ordering a test, prescribing a medication) without having robust science supporting it's clinical benefit, the answer is yes. There are a lot of things that we do in medicine based on our understanding of basic sciences for which the clinical benefit hasn't been rigorously demonstrated that well.

However, one has to be very careful with this for a couple of reasons. First, as previously mentioned, we are not that good at predicting clinical benefit based on perceived physiologic benefit. Second, the overall preponderance of effects of most things in medicine (including both tests and medications) is that it is more harmful than helpful.

Consequently, the situations in which you would do something without the clinical evidence to support it are limited. Most often it is because the downsides of whatever is being made a part of the treatment plan is likely to be very low, even if we are wrong. It also might be appropriate to do it in a higher risk setting under certain circumstance like as a last ditch effort to prevent death (many of the cardiopulmonary resuscitation things we do along with CPR actually have very poor evidence, but make physiologic sense, and we do them because if we are wrong, you can't make things worse by making them more dead).

In terms of your case, I wasn't a physician who did a full assessment on you so I can't definitively say what aspects of your care were right or wrong. I have some concerns (d-dimer is an extremely well understood test that has much more robust clinical data than TAT, for instance, so when they conflict I really think that d-dimer is the test that should be leaned on more for clinical decisions). But I have less objection about the things that you did to try to help yourself. My objection is more about taking something that may have been a very niche situation for your and suggesting that it would be more reasonable for that to be widespread. The science doesn't support that and it could be harmful.

Thank you again for taking the time to answer and with as much detail as you have.

I won't put words into your mouth, but i think we're on the same page. For me, and after a workup from my doctors we decided on a course of action with me signing off and moved forward. In my case and I'll only speak on my case it appeared successful.

However, i overstepped in making a broad statement on testing. I agree i shouldn't have done that and you've shown me why. And i think you're right that it doesn't make sense to expect a pcp without a full understanding of why you'd want a test to offer it. My doctors were in contact with the researchers i was working with so everyone involved know why and what was being looked for and how that benefited my treatment.

Thanks for sharing. Very interesting,