Clearly, you have a more conscientious group as you have stated. Both my husband and I have never had COVID (knock on wood). Future questions: either, "How many of you have been exposed to a test-confirmed case of COVID?" or, "Are you over 60 and/or medically immune-compromised?"
I wonder this all the time. But as people pointed out, there's "EXTREME exposure" (example: my kid has it and we sleep in the same house, eat in the same kitchen) and then there is "the guy next to me on the plane"...etc...
A huge problem with your future question number one in a presumed survey is *obviously* what is meant by the verbiage, “Exposed to a test-confirmed case of COVID” ? Duration of exposure, details of the actual physical situation (auditorium, side by side seating on a Airbus A300 enroute to England from Dallas, making love in some camping trailer parked by a frozen lake in Minnesota, etc.) ?
Agreed, J Lee MD PhD. So how can we make it more specific?? And can we? In my most recent case it was exposure for close proximity for 15 minutes and a hug. Followed by this person's notification that she was symptomatic and tested positive for COVID.
I would like to know what the "downside" (other than financial) is to permitting more than one vaccination per year if desired. Since the ability of the vaccines to prevent infection is apparently limited to very short periods, taking it often might reduce that chance. An ounce of prevention is worth... I know that vaccination is supposed to (and I believe does) make serious and fatal outcomes less frequent, but why wouldn't preventing more infections be very valuable as well. To repeat, what is the "downside" to more frequent vaccinations?
This is the subject of intense inquiry. The issue is complex. Like...if you are home health aide for someone with extremely high risks, I would argue that the cost-benefit analysis on vaccination should include the decreased spread to the person under your care. Of course, if they do rapid testing on a regular basis, that would be even more beneficial, because you could be vaccinated and still get/spread covid. But it's not likely if you had a negative rapid test today, for example.
I appreciate your response, but I would appreciate a response to my basic question - which I could rephrase in the terms you use - Cost/ benefit. You acknowledge the benefit (however limited) but what is the “cost”. I used the word “downside” meaning the same thing. Would really appreciate your thought because I’ve read so much about the vaccines and the “risks” (another word I suppose similar to downside and cost) but haven’t yet heard any cost that seemed significant. Especially for somebody over 75 with several comorbidities.
This poll shows that your echo chamber is not representative of the general public. There used to be some KFF information about percentage of people who had infections— are you aware of any data out there currently?
How about asking about mitigation behaviors— just was the only mask at CVS and is it just me, but I feel like I’m getting “side eye” looks in those circumstances. I’m masking in public spaces, especially pharmacies and healthcare.
I'm curious to know what prompts people to test for Covid assuming that they test at all (i.e. any mild symptoms at all such as beginnings of a sore throat; cold/allergy symptoms; fever, aches, or other more severe symptoms; exposure to Covid; before an event with immune-compromised; don't test; etc..).
I do a rapid test before any in-person inside event with more than a few people. (And I don't have a lot of those.) Most everyone I know is vulnerable in some way -- I'm 62 and most of my friends are older, up to 95 yrs. NIH has a link to a study done in 2020 that estimates that "45.4% to 56.0%" of the US population has an "underlying disorder" that can affect their risk for complications from Covid, and I've seen higher percentages than that lately (but can't recall where).
That is really good of you to do. Protecting High risk people is so important.
That said, I think the NIH probably overestimates this. Having hypertension is not great but it by itself + Covid is unlikely to land you in the hospital. So, over time I think we can de-escalate some of this. On the other hand, there are people walking around who are on chemotherapy and you'd have no idea. So, it's always great to think of those people and do as you do!
I test for myself out of necessity as I'm severely immune-compromised since long before COVID. I also test as I live by a Community Ethic that reflects and understands a responsibility to others. And because scientifically, I know that a virus's main function is to replicate and grow stronger. It does not care WHO you are politically, personally, or otherwise unless an identity, behavior, or quality makes you more vulnerable to being a good host.
I have had 7 Covid vaccines and have had test-confirmed Covid 3 times. This is because I have hypogammaglobulinaemia, so I don't make Covid antibodies from vaccines. I do make antibodies from having had Covid as well as monthly IVIG, but they don't protect me from new variants.
I would be curious to know how your docs are monitoring you in terms of knowing your immunity to Covid. Covid antibodies? Other tests? No pressure to share :) But I think there are no two docs doing this the same way and that is interesting unto itself
I had a Covid antibodies test in July 2023 on my rheumatologist's advice. It showed a score of 2500, after the first 2 Covid episodes and years of IVIG. Presumably no antibodies from vaccines, due to Hypogam. However, in spite of that robust score, I got my 3rd bout of Covid a few weeks later. It must have been a new variant that I didn't have antibodies for.
Ah, interesting, personally, as I also have CVID (Common Variable Immune Deficiency-hypogammaglobulinaemia) as you know, a not very common disease. In addition, I have Progressive MS (auto-immune disease) and am on a twice a year powerful immune-suppressant drug called Ocrevus that lowers B-cells and T cells significantly. I also have RA (auto-immune disease). Because the PMS has made my diaphragm muscles weaker along with other serious health issues, and I'm over 60, even with 7 COVID Vaccines/boosters, getting COVID is still likely to have a serious outcome for me (and people like me). Which brings me to this post from Jeremy Faust. I wonder if this group is especially conscientious because many of us are immune-compromised?
I do think there are probably more immunocompromised people in this readership than average. But I also think immunocompromised are more common *in general* than people otherwise appreciated prior to Covid. I hope the awareness has been a good thing.
We have a fair bit in common Lyn. I also have RA and have been on several immune-suppressing drugs, such as Rituxamab, along with have other auto-immune related and inflammatory conditions, including glaucoma and late-onset asthma. What brings me to the work and recommendations of Dr Faust, Dr Eric Topol Dr Zayed Al Ali, etc, is that I have developed many of the symptoms for Long Covid since I first had Covid: fatigue, brain fog, breathlessness, and heart palpitations and tachycardia.
If we're talking only Covid, then I guess are the main symptoms people are getting still the same? Anecdotally seems to me people are having additional GI symptoms lately. Still losing sense of smell/taste?
If we're talking Ask me Anything, then I wonder if, anecdotally anyone is having trouble dosing levothyroxine? Back in the day (1979/1980) when I first started, recommendation was to not switch from initial preparation because different brands and the generic all had different amounts. That got cleaned up at some point and it was a non-issue since late 1990's. But I've been having trouble keeping TSH where it should be for the past year and I'm wondering if control has gotten a little lax due to supply chain issues/factory closures/overworked quality testers or something. Is anyone else seeing a problem with this?
Interesting re: levothyroxine. TSH is a fickle thing. I am not an endocrinologist but I see a lot of variance when we test for TSH in the ER. I'd have to ask a specialist on this one!
RE the Covid symptoms: I think these days that symptoms reflect a person's individual immune history. How many doses of the vaccine have they had? How many times have they had Covid? When did that happen in relation to one another? All these things can change how your body responds and therefore what symptoms you might experience. So I tend to "ignore" when we hear reports of a new variant having more or less of a certain symptom, tbh!
1) “Gold standard“ PCR‘s have a substantial false negative rate in the lab, and a much higher one in real life, and every type of test, RAT & molecular, is validated against them. This is not known to the public, nor probably many in healthcare, but there is an ample literature. So when folks ask whether RIT have been revalidated, no one raises the fact that validation is based upon very imperfect standards.
I think about the impact of this on research all the time, especially when PCR‘s are used to determine infection status. I’ve never seen it mentioned as a limitation in a study.
2) Tests can find virus only in the oral cavity, not virus that has infected other parts of the body such as the G.I. tract, as is happening with current variants. This was raised by Marc Johnson, the wastewater expert & confirmed by Mike Mina, both of whom stated that stool tests would be ideal. The sole approved stool test is sold in pharmacies in Greece, but the instructions were posted by Marc, and have been reposted a few times by me, on Twitter.
When I came home from Mexico the other day, with what I was sure was very mild food poisoning, I used an oral RAT to test my stool, which was negative. I’m sure the chemicals in the solutions differ, but a couple of people have done variations of the protocol and posted positive results.
3) I tried using Threads, but to my disgust, all my posts showed up on Instagram, which I use for very different purposes, and where I have a very different persona. I post a lot on Twitter because I am doing Covid volunteer work for 13 doctors at 4 NY academic medical Centers. As a result, I deleted my Threads account.
4) it might be interesting to ask about the risk factors your followers have. There’s much more than being old, or immunocompromised. For example, an incidental finding showed that I was homozygous FVL, which all my doctors said I could ignore. Then I started reading the literature on Covid and clotting, and went through several hematologists before I found one who knew what I was asking about.
I have Type A blood, which increases my infection risk 27 - 50%, I’m highly allergic, which could make me prone to MAST cell activation and I’m hypermobile, so Covid could cause EDS. Since I am a very healthy 75, and have non-IgE allergies and adverse reactions to many meds, and I am determined to be the first person in my family to have a healthy old age , the last thing I want is Covid.(you might ask how many of us have become well versed in indoor air quality and have bought purifiers over the past four years. I have.)
1. Complicated. I'll punt here. I do not believe most PCR tests are negative owing to anything other than a bad swab. Gold standard=the best we have, which is different than 'ground truth.'
2. Interesting points. I think most people are sticking with nasal but it's possible that other routes could improve yield.
3. That can be fixed in your settings :)
4. Good idea. As above, I also think there are risks and there are risks. Having asthma (as I do) is pretty low risk. Having an organ transplant is a lot higher. So I'd like to see this become more nuanced.
“ Rate of false negative w covid is high on any test, PCR or antigen. It’s not the test, it’s where the virus likes to hang out (not the anterior nose)”
Here are some that I came across while doing a search.
Given Jeremy’s response that Gold Standard is very different than Ground Truth, I am appalled that this is the first time, four years later, that a medical professional explained that. I think all of us who take Covid seriously have been assuming that gold standard = extremely reliable. The fact that it was required for international travel and so many other things early on heightened the perception that it was something you could go to the bank on.
People on X are constantly asking for RAT to be updated for current variants, when the problem with testing lies elsewhere but no one ever talks about anything more than having ample viral load in your swab sample for RATs to turn positive.
There’s a sub thread about stool testing pin to my profile on X, which maybe you could find via a search, because, like most, I use a pseudonym.
Agreed, J Lee MD PhD. So how can we make it more specific? And can we? In my case it was exposure for close proximity for 15 minutes and a hug. Followed by this person's notification that she was symptomatic and tested positive for COVID.
Clearly, you have a more conscientious group as you have stated. Both my husband and I have never had COVID (knock on wood). Future questions: either, "How many of you have been exposed to a test-confirmed case of COVID?" or, "Are you over 60 and/or medically immune-compromised?"
I wonder this all the time. But as people pointed out, there's "EXTREME exposure" (example: my kid has it and we sleep in the same house, eat in the same kitchen) and then there is "the guy next to me on the plane"...etc...
A huge problem with your future question number one in a presumed survey is *obviously* what is meant by the verbiage, “Exposed to a test-confirmed case of COVID” ? Duration of exposure, details of the actual physical situation (auditorium, side by side seating on a Airbus A300 enroute to England from Dallas, making love in some camping trailer parked by a frozen lake in Minnesota, etc.) ?
nice examples lol
Agreed, J Lee MD PhD. So how can we make it more specific?? And can we? In my most recent case it was exposure for close proximity for 15 minutes and a hug. Followed by this person's notification that she was symptomatic and tested positive for COVID.
Maybe this one: "Has anyone you LIVE with had Covid?"
1. No.
2. Yes, and I think I got it from them.
3. Yes, and I think I gave it to them!
4. Yes, and I think we got it from the same place (i.e., outside the home).
Like that?
5. Yes and I didn't get it from them.
I would like to know what the "downside" (other than financial) is to permitting more than one vaccination per year if desired. Since the ability of the vaccines to prevent infection is apparently limited to very short periods, taking it often might reduce that chance. An ounce of prevention is worth... I know that vaccination is supposed to (and I believe does) make serious and fatal outcomes less frequent, but why wouldn't preventing more infections be very valuable as well. To repeat, what is the "downside" to more frequent vaccinations?
This is the subject of intense inquiry. The issue is complex. Like...if you are home health aide for someone with extremely high risks, I would argue that the cost-benefit analysis on vaccination should include the decreased spread to the person under your care. Of course, if they do rapid testing on a regular basis, that would be even more beneficial, because you could be vaccinated and still get/spread covid. But it's not likely if you had a negative rapid test today, for example.
I appreciate your response, but I would appreciate a response to my basic question - which I could rephrase in the terms you use - Cost/ benefit. You acknowledge the benefit (however limited) but what is the “cost”. I used the word “downside” meaning the same thing. Would really appreciate your thought because I’ve read so much about the vaccines and the “risks” (another word I suppose similar to downside and cost) but haven’t yet heard any cost that seemed significant. Especially for somebody over 75 with several comorbidities.
This poll shows that your echo chamber is not representative of the general public. There used to be some KFF information about percentage of people who had infections— are you aware of any data out there currently?
How about asking about mitigation behaviors— just was the only mask at CVS and is it just me, but I feel like I’m getting “side eye” looks in those circumstances. I’m masking in public spaces, especially pharmacies and healthcare.
Oh I like the idea of "when do you mask?" good one!
I'm curious to know what prompts people to test for Covid assuming that they test at all (i.e. any mild symptoms at all such as beginnings of a sore throat; cold/allergy symptoms; fever, aches, or other more severe symptoms; exposure to Covid; before an event with immune-compromised; don't test; etc..).
This is a good one! I'd have to think about phrasing.
I do a rapid test before any in-person inside event with more than a few people. (And I don't have a lot of those.) Most everyone I know is vulnerable in some way -- I'm 62 and most of my friends are older, up to 95 yrs. NIH has a link to a study done in 2020 that estimates that "45.4% to 56.0%" of the US population has an "underlying disorder" that can affect their risk for complications from Covid, and I've seen higher percentages than that lately (but can't recall where).
That is really good of you to do. Protecting High risk people is so important.
That said, I think the NIH probably overestimates this. Having hypertension is not great but it by itself + Covid is unlikely to land you in the hospital. So, over time I think we can de-escalate some of this. On the other hand, there are people walking around who are on chemotherapy and you'd have no idea. So, it's always great to think of those people and do as you do!
I test for myself out of necessity as I'm severely immune-compromised since long before COVID. I also test as I live by a Community Ethic that reflects and understands a responsibility to others. And because scientifically, I know that a virus's main function is to replicate and grow stronger. It does not care WHO you are politically, personally, or otherwise unless an identity, behavior, or quality makes you more vulnerable to being a good host.
I have had 7 Covid vaccines and have had test-confirmed Covid 3 times. This is because I have hypogammaglobulinaemia, so I don't make Covid antibodies from vaccines. I do make antibodies from having had Covid as well as monthly IVIG, but they don't protect me from new variants.
I would be curious to know how your docs are monitoring you in terms of knowing your immunity to Covid. Covid antibodies? Other tests? No pressure to share :) But I think there are no two docs doing this the same way and that is interesting unto itself
I had a Covid antibodies test in July 2023 on my rheumatologist's advice. It showed a score of 2500, after the first 2 Covid episodes and years of IVIG. Presumably no antibodies from vaccines, due to Hypogam. However, in spite of that robust score, I got my 3rd bout of Covid a few weeks later. It must have been a new variant that I didn't have antibodies for.
Ah, interesting, personally, as I also have CVID (Common Variable Immune Deficiency-hypogammaglobulinaemia) as you know, a not very common disease. In addition, I have Progressive MS (auto-immune disease) and am on a twice a year powerful immune-suppressant drug called Ocrevus that lowers B-cells and T cells significantly. I also have RA (auto-immune disease). Because the PMS has made my diaphragm muscles weaker along with other serious health issues, and I'm over 60, even with 7 COVID Vaccines/boosters, getting COVID is still likely to have a serious outcome for me (and people like me). Which brings me to this post from Jeremy Faust. I wonder if this group is especially conscientious because many of us are immune-compromised?
I do think there are probably more immunocompromised people in this readership than average. But I also think immunocompromised are more common *in general* than people otherwise appreciated prior to Covid. I hope the awareness has been a good thing.
I agree. I had high hopes at the beginning of COVID that it would advance our much needed knowledge of auto-immune and immune deficiency diseases. Sadly, no one wants to deal with it now and it's a political hot potato. (Part of the reason I'm so grateful for your investigation.) There has been an increase in auto-immune diseases in last 10 years ( https://medicine.yale.edu/news/yale-medicine-magazine/article/untangling-the-web-of-autoimmune-diseases/ ) and increasingly we find people like myself with more than one. There also seems to be some concern that having had severe COVID increases chance of https://www.thelancet.com/journals/eclinm/article/PIIS2589-5370(23)00331-0/fulltext .
We have a fair bit in common Lyn. I also have RA and have been on several immune-suppressing drugs, such as Rituxamab, along with have other auto-immune related and inflammatory conditions, including glaucoma and late-onset asthma. What brings me to the work and recommendations of Dr Faust, Dr Eric Topol Dr Zayed Al Ali, etc, is that I have developed many of the symptoms for Long Covid since I first had Covid: fatigue, brain fog, breathlessness, and heart palpitations and tachycardia.
"Liked" but sorry to hear.
If we're talking only Covid, then I guess are the main symptoms people are getting still the same? Anecdotally seems to me people are having additional GI symptoms lately. Still losing sense of smell/taste?
If we're talking Ask me Anything, then I wonder if, anecdotally anyone is having trouble dosing levothyroxine? Back in the day (1979/1980) when I first started, recommendation was to not switch from initial preparation because different brands and the generic all had different amounts. That got cleaned up at some point and it was a non-issue since late 1990's. But I've been having trouble keeping TSH where it should be for the past year and I'm wondering if control has gotten a little lax due to supply chain issues/factory closures/overworked quality testers or something. Is anyone else seeing a problem with this?
Interesting re: levothyroxine. TSH is a fickle thing. I am not an endocrinologist but I see a lot of variance when we test for TSH in the ER. I'd have to ask a specialist on this one!
RE the Covid symptoms: I think these days that symptoms reflect a person's individual immune history. How many doses of the vaccine have they had? How many times have they had Covid? When did that happen in relation to one another? All these things can change how your body responds and therefore what symptoms you might experience. So I tend to "ignore" when we hear reports of a new variant having more or less of a certain symptom, tbh!
Never
me too!
1) “Gold standard“ PCR‘s have a substantial false negative rate in the lab, and a much higher one in real life, and every type of test, RAT & molecular, is validated against them. This is not known to the public, nor probably many in healthcare, but there is an ample literature. So when folks ask whether RIT have been revalidated, no one raises the fact that validation is based upon very imperfect standards.
I think about the impact of this on research all the time, especially when PCR‘s are used to determine infection status. I’ve never seen it mentioned as a limitation in a study.
2) Tests can find virus only in the oral cavity, not virus that has infected other parts of the body such as the G.I. tract, as is happening with current variants. This was raised by Marc Johnson, the wastewater expert & confirmed by Mike Mina, both of whom stated that stool tests would be ideal. The sole approved stool test is sold in pharmacies in Greece, but the instructions were posted by Marc, and have been reposted a few times by me, on Twitter.
When I came home from Mexico the other day, with what I was sure was very mild food poisoning, I used an oral RAT to test my stool, which was negative. I’m sure the chemicals in the solutions differ, but a couple of people have done variations of the protocol and posted positive results.
3) I tried using Threads, but to my disgust, all my posts showed up on Instagram, which I use for very different purposes, and where I have a very different persona. I post a lot on Twitter because I am doing Covid volunteer work for 13 doctors at 4 NY academic medical Centers. As a result, I deleted my Threads account.
4) it might be interesting to ask about the risk factors your followers have. There’s much more than being old, or immunocompromised. For example, an incidental finding showed that I was homozygous FVL, which all my doctors said I could ignore. Then I started reading the literature on Covid and clotting, and went through several hematologists before I found one who knew what I was asking about.
I have Type A blood, which increases my infection risk 27 - 50%, I’m highly allergic, which could make me prone to MAST cell activation and I’m hypermobile, so Covid could cause EDS. Since I am a very healthy 75, and have non-IgE allergies and adverse reactions to many meds, and I am determined to be the first person in my family to have a healthy old age , the last thing I want is Covid.(you might ask how many of us have become well versed in indoor air quality and have bought purifiers over the past four years. I have.)
1. Complicated. I'll punt here. I do not believe most PCR tests are negative owing to anything other than a bad swab. Gold standard=the best we have, which is different than 'ground truth.'
2. Interesting points. I think most people are sticking with nasal but it's possible that other routes could improve yield.
3. That can be fixed in your settings :)
4. Good idea. As above, I also think there are risks and there are risks. Having asthma (as I do) is pretty low risk. Having an organ transplant is a lot higher. So I'd like to see this become more nuanced.
Mike Mina:
“ Rate of false negative w covid is high on any test, PCR or antigen. It’s not the test, it’s where the virus likes to hang out (not the anterior nose)”
https://x.com/michaelmina_lab/status/1745891316184052125?s=61&t=0Kk1nfnfCuFQboXP0bSAmg
https://x.com/michaelmina_lab/status/1747063168050864145?s=61&t=0Kk1nfnfCuFQboXP0bSAmg
Can’t find his post where he says stool sample would be better.
FYI
FVL odds ratio: 1.80 for VTE, 1.23 for mortality
https://www.ahajournals.org/doi/10.1161/CIRCULATIONAHA.121.057394
can you please share the source(s)of your 1) statement about reliability of PCR and other covid tests. thx
Here are some that I came across while doing a search.
Given Jeremy’s response that Gold Standard is very different than Ground Truth, I am appalled that this is the first time, four years later, that a medical professional explained that. I think all of us who take Covid seriously have been assuming that gold standard = extremely reliable. The fact that it was required for international travel and so many other things early on heightened the perception that it was something you could go to the bank on.
People on X are constantly asking for RAT to be updated for current variants, when the problem with testing lies elsewhere but no one ever talks about anything more than having ample viral load in your swab sample for RATs to turn positive.
There’s a sub thread about stool testing pin to my profile on X, which maybe you could find via a search, because, like most, I use a pseudonym.
https://t.co/akL33nELWr
https://www.medpagetoday.com/special-reports/exclusives/96789
https://www.rutgers.edu/news/trust-clinical-covid-19-signs-over-negative-rt-pcr-test%0A
https://www.gavi.org/vaccineswork/false-negative-how-long-does-it-take-coronavirus-become-detectable-pcr
https://www.mdpi.com/2571-841X/3/3/23
0
zero, for both my wife and I. We mask much of the time, but go to weddings and parties and pot-lucks regularly.
Agreed, J Lee MD PhD. So how can we make it more specific? And can we? In my case it was exposure for close proximity for 15 minutes and a hug. Followed by this person's notification that she was symptomatic and tested positive for COVID.
"Have you ever hugged a person with Covid"?
1. Yes, but I didn't get Covid.
2. Yes, and I got Covid after.
3. Nope!
AFAIK, I have never had Covid. I test a lot but that's only in the last 2 years.
same. negative x gazillion on tests :) so far....