I know people who had it bad (including long COVID). But the worst cases including long COVID were before vaccines. A few got it bad with just initial vaccines and no boosters. Boosted people I know mostly got mild cases.
My observations do match most research in that the risk from getting infected is much higher without vaccine than after getting vaccine, particularly 3+ doses.
This is where the disconnect is. It is not small. In fact, itās quite large. You donāt determine the extent of the risk by looking around at your neighbors and friends. You determine the risk by looking at data. Studies and expert analysis put the percentage at 10% to 15%. Thatās extremely high.
https://www.nature.com/articles/s41467-022-33415-5?mibextid=ykz3hl
https://www.nature.com/articles/s41591-022-01840-0?mibextid=ykz3hl
Luckily, researchers are homing in on who exactly is most at risk, and the numbers appear to be going down. Published today!
I admit I only skimmed this - supposed to be at work 
- but Iām a bit confused. Everything else Iāve seen - and been told all my life - is that the immune system needs regular boosts in order to function well. That the extreme rise in flu and rsv last fall was due to a lack of exposure during the pandemic - similar to when a kid starts a new school. Why the assumption that Covid caused the immune dysfunction and not the lack of āexerciseā so to speak for our immune systems for those two years? If it was Covid why have the flu and RSV receded as rapidly as they came?
Be careful with numbers in media. The articles pertain to those who have had covid, which is about half of the population. Sure, there are perhaps thousands/millions(?) of unreported cases, so the denominator is much higher that just those documented cases of covid.
Per the NYT article:
āIt found that patients over 40, those with previous health issues and those who had a severe coronavirus infection had greater risk of developing long Covid. And it affirmed a growing consensus that vaccination lowers that risk.ā
So, for young health folks, the risk of long covid is the low single digits at worst. Not to mention, what is ālong covidā? Sure heart problems are scary, but losing a sense of smell for 90+ days is more of an inconvenience/PIA.
I never lost my sense of smell at all but 3 cases of bronchitis, 2 pneumonia, 2 hospitalizations (one 5 days, one 8 days) is not nothing. And now I have to use Dupixent every 2 weeks with a gigantic copay. Certainly NOT NOTHING.
My case of Covid in May 2022 was not severe; with Paxlovid I felt so much better after 5 days. But since then, one serious health problem after another.
Just to clarify: I totally totally get it that people will make their choice of how close to a ānormal lifeā they they will resume. I was just unlucky I guess. I am slightly overweight (less now, lol although I havenāt weighed myself), reasonably activeāwhen I am well, I walk a lot as a New Yorker, rent a car when I need it but otherwise, take the subway, and there is no elevator at my stop. No diabetes at all, quit smoking 35 years ago; will be 75 in June. But I definitely lost the long covid lottery.
yes, there is a full range of symptoms ā some minor, many significant ā that falls under āLong Covidā; and my point was that we should be focusing on the significant in the numerator.
It matters how ālong COVIDā is defined. The definitions do vary, making it hard to compare different research.
Also, many definitions include both temporary minor effects that last some months and severe effects that are seemingly permanent. Most people would be more concerned about the latter than the former.
10-15% chance of severe seemingly permanent long COVID would get people a lot more concerned than they actually are. But the chance of severe seemingly permanent long COVID appears much lower than that for a vaccinated and boosted person who gets COVID-19 (which the chance of is reduced by vaccination to begin with), based on both data and anecdotes. If severe seemingly permanent long COVID still occurred at 10% or higher rates, almost everyone would know some anecdotes.
I donāt know what is required for eligibility but my D participated in a program where she was able to get the dupixent copay covered. The program may have been called dupixent my way??
My D developed a reaction within days of the vaccine and has never been the same since, and went on to get covid three times and every other respiratory virus thatās come around since. Iām sure that hasnāt helped. Her immune system reacts to everything it shouldnāt and not well to what it should. Unfortunately, dupixent didnāt help with the problems triggered by the vaccine, but I hope it is helpful to you. Iām glad you are home and I look forward to your dupixent updates.
Sometimes these medication assist programs are for those with private insurance. They donāt accept anyone on Medicare. It makes no sense. But Iām not sure if there are assist programs for those on Medicare. But the one thing you have to answer is that you are not on any insurance that is government based. (Working for the gov, ACA insurance or Medicare).
Assuming that @oldmom4896 is on Medicare.
I will be so happy when I think things change (I think 2025) and your out of pocket expenses are capped at $2400.
Thanks, @deb922. I have a Medicare Advantage plan with Humana. They said they have no grants at the moment but the manufacturer of Dupixent has a program. Itās on my to-do list for tomorrow.
Yes, the program with the manufacturer is the one you want. I hope it works out for you.
Reading the studies that you actually linked, it seems more logical to say that those particular studies peg the current likelihood to less than 5% for healthy, vaccinated, middle-aged people, not 10-15%. And declining.
But as mentioned above, most of these studies very frustratingly do not separate two very distinct conditions: 1) temporary, minor/mildly annoying long-covid, and 2) truly debilitating and scary long-covid (such as what OldMom has been experiencing, and which is far rarer). Separating these conditions and focusing on the actual scary form of long-covid would make these studies more useful; lumping such a range together in my mind makes them utterly useless. Additionally, I have noticed most studies rely on unreliable self-reported information which has all sorts of problems and biases. But as I have done my best reading all the info I can on long-covid, trying to ascertain my own risk of anything Iād be afraid to contract, it seems clear that my own risk is far below 1% (non-smoker, donāt suffer anxiety/depression, not obese, 5 vaccination shots, no auto-immune disorders, no diabetes, etc etc etc). I think many other people can read through the lines to do this sort of estimate and also logically surmise that their risk is a small fraction of 1%. (Which of course doesnāt mean that one canāt lose the lotteryāso sorry OldMom that you got the short straw, and praying for a full recovery asap!)
But given the studiesā shortcomings, it actually is completely logical for people to do their own investigating. When one knows literally hundreds (perhaps thousands) of people who have fully recovered from covid and none seemingly suffer from any long-covid (and clearly absolutely not with the type of horror stories that these articles seem to love to mention where a person has such severe brain fog that they canāt even read a single email and cannot get out of bed or go to work), it is completely ok to extrapolate something useful from that large data set that they have available right in front of them!
Sometimes itās useful to read the analysis of someone else who is a health care expert. Even though this was written 10 months ago ā which can be like 10 years in covid time ā it still resonates for me. Itās one of the articles I linked above. Iām open to hearing why this analysis is irrational.
Stop dismissing the risk of long covid
By Ezekiel J. Emanuel
This is a gift link.
https://wapo.st/3FO6ZqG
his math is similar to the others.
but I do find it ironic that he rides a motorcycle: chance of accident 1:100 (note, he conveniently uses the more rare death rate).
But the broader point is that he willfully accepts that risk. Others, willfully accept a <5% risk of long covid. As noted by another poster, every person has to be comfortable with their own risk.
Thanks for the articleāvery interesting and it reinforces my continuing to mask with high-quality well-fitting mask.
Emanuel writes his opinion that āa 1-in-33 chance (or a 3 percent rate of long covid) of brain fog, debilitating fatigue, shortness of breath or any of the other serious post-covid symptoms is way too high for me to forgo unobtrusive precautions.ā
However, not all long COVID is severe permanent effects. The cited paper at Reduced Incidence of Long-COVID Symptoms Related to Administration of COVID-19 Vaccines Both Before COVID-19 Diagnosis and Up to 12 Weeks After defines long COVID cases āas those where the patient presented one or more COVID-associated symptoms between 12 and 20 weeks after the initial COVID-19 diagnosisā, which obviously does not differentiate by severity (other than number of symptoms) or duration beyond that time frame. The paper also notes that vaccination is not only associated with reduced rate of long COVID symptoms, but also fewer symptoms among those who get long COVID, hinting that vaccination may reduce the severity of such if it does happen.
If it really were a 1 in 33 chance of severe permanent long COVID even with vaccination and boosters, a lot more people would be a lot more concerned, many more people would know anecdotal stories of such, and hospitals and physicians would be much more heavily loaded with long COVID patients.
Donāt dismiss the risk of long COVID (i.e. donāt assume that it does not happen or that every case is mild and temporary), but donāt exaggerate it (i.e. donāt assume that every case is severe and permanent) either. Indeed, if exaggerating the risk of long COVID increases oneās anxiety, would that increase the risk of long COVID if one does get COVID-19?
It would help if there were research on long COVID risk that subdivided long COVID into categories of severity and duration, so that people can get a better idea of actual risk levels, rather than the all-too-common assumption of the best case or worst case when there is an information gap.
Which is where CoViD-19 falls into a different category: There is the āgetting infectedā part in the first place, where like the flu or a cold the immune system can fight it off/damper it in the early stages (which the majority of people already canāt, prior to the vaccine) - but then there is the second part where it causes the healthy immune system to overreact, with the serious consequences we have all since learned about.
Itās not an autoimmune disease; Iām only mentioning it as an example where a āwell exercisedā immune system can (still) work against you. And Iāve seen CRS mentioned in the context of CoViD-19:
Anyone here have information about swollen lymph glands (in the neck) as an after effect of Covid?