This isn't a perfect treatment that cures everyone, but the efficacy seems rather high and the safety profile already exists given how much this has been given in acute covid during the EUA.
Also there is an upcoming monoclonal antibody that just went into clinical trials for safety that acts like a "pan" mAb which can target all variants with high efficacy by regeneron(look for REGN17092 below):
Finally, there have been some people participating in the AER002 clinical trial (closest to Lilly's bebtelovimab) where they are seeing complete reversal of symptoms. The challenge is that there is existing literature suggesting both cases where people get better permanently and some people only are better for the duration of the half-life of the drug.
Either way you look at it, treatments are looking closer than ever.
How much do we understand today about the physical cause of “Long Covid” and how covid causes it?
Is this an accumulation of lasting damage to assorted organs (including brain) and the direct and higher order effects of that? Or is there some ongoing infection to be combatted?
Short answer is...we somewhat have hypotheses around the cause. We don't know much about the lasting damage yet.
Many folks who have long covid do not have any organ damage from acute infection. But the big question is if a persistent infection causes damage over the duration.
After the acute phase, the virus remains in the body -- in that way, it's like HPV or HIV. In some people it's dormant, in others it weakens and wastes certain organs or entire systems (like the T-cell depletion, weakening the immune system).
There is also some evidence that some of the significant mutations / new strains arose not from "natural selection" via transmission, but from prolonged mutation in a single host.
> There is also some evidence that some of the significant mutations / new strains arose not from "natural selection" via transmission, but from prolonged mutation in a single host.
I have read a lot of research on this topic and I have not seen this suggestion, rather I have only seen the neutral (that it hasn't mutated from persistence/potential replication in a host).
It sounds like Destin took great care to remain positive and supportive, but I can't help and read between the lines the reality of Diane's dire situation: a year and a half later, her situation has not improved. This is with full support of an amazing, resourceful spouse (and presumably, her family as well).
The unspoken hard truth here is this: Long Covid is a nightmare, it's an open-ended sentence for lifetime disability. We as a society have generally "moved on" - which again, translates to a ruthless abandonment of those who happen to tangle with the actual reality of this ever-present illness and lose the to the russian-roulette-odds of the draw where the acute phase ends, but the long-term consequences bloom.
It's an absolute absurdity that we collectively "went back to normal", pretending this endemic virus that can wreak havoc across multiple organs and systems just went away - while we did very, very little to enact any impactful change at all.
Every Covid-19 infection carries with it a 15% chance of Long Covid, and the odds worsen with every subsequent infection - by the 5th time, you're basically looking at a coin toss. Diane is one example, but there are over 65M people worldwide with this affliction - a debilitating, fully disabling, long-term illness with no known cures or mitigations. There doesn't seem to be much urgency in finding any, either, and the entire situation is not getting mass media attention, while "content creators" who post about it appear to get demonetized.
The risks are real, and the consequences catastrophic. This is a mass-disabling event, and we're pretending not to notice; it's slow roll is making that easier. If we do nothing today, a decade from now our society will be utterly transformed.
We need to invest time and effort into changing the public perception, push for air quality standards to be enforced via OSHA and equivalent, and otherwise promote clean air standards in shared indoor spaces. People don't like wearing "masks" (fair, the surgical or cloth ones don't do much here, you need a proper N95 respirator or equivalent), but unless we have proper infrastructure in place, this is the only fallback.
The comparison to the (somewhat apocryphal) actions of Dr John Snow and the plague-spreading water pump in London's old SOHO has been made again and again -- the learnings from that time are what led the officials to build entire sewer and water purification systems, a basis which permit modern cities to exist. The same thing needs to happen today for the air which we breathe.
Content creators and online personalities with big followings have a responsibility to spread a science-positive, pro-social message like this. And if a call to a "greater good" falls on deaf ears - think selfishly. If a very popular online persona like Physics Girl can fade into obscurity overnight, what will happen to you?
The CDC director and other country health ministers have started to publicly recognize long covid recently. The government is trying to get ahead of the accessibility challenges of potentially life-saving/reversing drugs too:
> The Administration is focused on making sure medications developed with taxpayer funds are available to Americans at reasonable prices.
> In September 2023, ASPR finalized a Project NextGen contract agreement for a potentially life-saving COVID-19 treatment being developed by Regeneron stating if the product is commercialized, its list price in the United States will be equal to or less than its retail price in comparable global markets.
The big problem is 100% public perception. We have as a country failed miserably to further message the pandemic's second-order consequences. We need courageous public leaders to message this public health crisis in terms that will get through to people: i.e. economics, productivity, and the anguish of other human beings.
I believe Physics Girl is going to make a video on long covid or post-acute infection syndromes soon. Hopefully that can help bring additional awareness here.
I didn't mean to sound so hopeless -- you're right, there are people pushing in the right direction. But as you say, public health officials and elected leaders have by and large dropped the ball, stabbed it a bunch of times, and threw the deflated remnants down an abandoned mine shaft. All it took was some clever targeted manipulation of the most susceptible people and the weak spines / weathercock nature of politicians.
We knew back in 2020 that LC is a thing, and what the treatments could look like [1]. Researchers at the time likened it to HIV, and did so with the treatments as well (a cocktail of antivirals).
I'm giving the government the benefit of the doubt. They have done some good things generally speaking (RECOVER, NIH budget re-allocation($200m), limiting profits of nextgen drugs, etc).
They have done some dumb things too like calling the pandemic over, FDA limiting all use of life-reversing covid therapeutics due to "new variants", and allowing the first-gen covid therapeutics to be priced on the market (look how ridiculous paxlovid is for example or any recent vaccine).
I would not be surprised to see the CDC or NIH director, or even the president come out to talk about the elephant in the room early next year. While actions speak louder than words, I think many afflicted humans want to hear the words part too.
> Every Covid-19 infection carries with it a 15% chance of Long Covid
Then 7% of the German population, 5.5% of the UK population etc.¹, should, as a lower bound because that's only confirmed cases (with PCR afaik), have long covid now, based on OWID²
The percentage should probably be double or quadruple, if you consider how many infections are asymptomatic or not tested for other reasons (no wish/need for medical help, mistrust of "the system"..). (Edit: yeah double is about right for the part of people that will never even have considered getting tested: an article³ cites a study from 2021 in which 40.5% of people who contracted the virus had no symptoms)
In reality, I'm not seeing one in ten persons crippled from covid
¹ those are simply the first countries I checked because I expect them to have good data, but probably that's representative for any ~densely populated region
I was going by the figures from Stats Canada [1] which indicates that one in nine Canadians have had Long Covid, I image there would be some variation based on locale.
An epidemiologist I follow on Twitter correlated the StatsCan data with predictive models (which were showing the cumulative risk of LC given number of infections) and the numbers line up incredibly well [2].
> In reality, I'm not seeing one in ten persons crippled from covid
That's the tragic part: you will not see them, they're effectively invisible. Unless it's someone you know, who has suddenly faded from view -- how would you know? These people are staying at home, quietly tucked away, being taken care of by loved ones if they're lucky to have them.
I would indeed know by people disappearing: I know plenty of colleagues, family members, and friends, that a 1-in-10 statistic ought to manifest itself. It is impactful enough to do this type of bed care that I would also certainly hear it if one of those colleagues/family/friends had to take care of another person, and for a subset of those, where I'd hear if anyone in their extended circles had such a need. When MH17 was downed in 2014, carrying ~300 Dutch (on ~17 million, 0.002%, compare that to the percentages we're talking about here! That's 3.5 orders of magnitude), it seemed like everyone in the country knew someone who died; for me, it took a few weeks but it turned out that a friend vaguely knew someone who had died in the Russian attack. I also know some elderly people who died from covid, so those stats line up with experience to within error margins.
The discrepancy probably lies in the "have had" part you mentioned. The majority of this group were never as severely ill as the person this thread is about, nor had any issues lasting this long. I know one person who said they got tired faster for a few months after contracting covid fairly early on, but it's not like their life was ruined (during that time, they partially stopped doing the sports that they enjoyed so that they had the energy at work and for household chores; afaik that was the main change it forced upon them beyond the first two weeks).
That is not to say long covid, or severe long covid, doesn't happen or to downplay the impact on those to whom it does happen. Diana is an undeniable example. I'm just disagreeing with the "you've got at 15% chance of »a debilitating, fully disabling, long-term illness with no known cures or mitigations« per infection, and the odds worsen further with every reinfection" part. That severity level is not quite that likely
22 comments
[ 3.2 ms ] story [ 58.7 ms ] threadFor example look at this study from Italy on antivirals + monoclonal antibodies:
https://www.mdpi.com/2079-6382/12/9/1460
14/15(93%) found viral clearance with a combined therapy.
13 patients were alive, asymptomatic, and negative for SARS-CoV-2 by 90 days. 2 passed away for other causes.
There are other existing literature on these things helping middle-aged people as well such as:
https://www.medscape.com/viewarticle/monoclonal-antibodies-n...
3 lives completely restored back to normal with the use of an existing monoclonal antibody just sitting on shelves.
https://www.sciencedirect.com/science/article/pii/S073567572...
This isn't a perfect treatment that cures everyone, but the efficacy seems rather high and the safety profile already exists given how much this has been given in acute covid during the EUA.
Also there is an upcoming monoclonal antibody that just went into clinical trials for safety that acts like a "pan" mAb which can target all variants with high efficacy by regeneron(look for REGN17092 below):
https://investor.regeneron.com/static-files/a73a7d9c-591d-43...
https://clinicaltrials.gov/study/NCT05923424?intr=REGN17092
Finally, there have been some people participating in the AER002 clinical trial (closest to Lilly's bebtelovimab) where they are seeing complete reversal of symptoms. The challenge is that there is existing literature suggesting both cases where people get better permanently and some people only are better for the duration of the half-life of the drug.
Either way you look at it, treatments are looking closer than ever.
Is this an accumulation of lasting damage to assorted organs (including brain) and the direct and higher order effects of that? Or is there some ongoing infection to be combatted?
https://www.youtube.com/watch?v=278vwGkFXRM
There's many more of these types of videos by the NIH and other large groups too.
There are also reviews here: https://www.nature.com/articles/s41579-022-00846-2
Short answer is...we somewhat have hypotheses around the cause. We don't know much about the lasting damage yet.
Many folks who have long covid do not have any organ damage from acute infection. But the big question is if a persistent infection causes damage over the duration.
There is also some evidence that some of the significant mutations / new strains arose not from "natural selection" via transmission, but from prolonged mutation in a single host.
I have read a lot of research on this topic and I have not seen this suggestion, rather I have only seen the neutral (that it hasn't mutated from persistence/potential replication in a host).
Do you have a link to a study that suggests this?
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9241677/
https://pubmed.ncbi.nlm.nih.gov/35996593/
The unspoken hard truth here is this: Long Covid is a nightmare, it's an open-ended sentence for lifetime disability. We as a society have generally "moved on" - which again, translates to a ruthless abandonment of those who happen to tangle with the actual reality of this ever-present illness and lose the to the russian-roulette-odds of the draw where the acute phase ends, but the long-term consequences bloom.
It's an absolute absurdity that we collectively "went back to normal", pretending this endemic virus that can wreak havoc across multiple organs and systems just went away - while we did very, very little to enact any impactful change at all.
Every Covid-19 infection carries with it a 15% chance of Long Covid, and the odds worsen with every subsequent infection - by the 5th time, you're basically looking at a coin toss. Diane is one example, but there are over 65M people worldwide with this affliction - a debilitating, fully disabling, long-term illness with no known cures or mitigations. There doesn't seem to be much urgency in finding any, either, and the entire situation is not getting mass media attention, while "content creators" who post about it appear to get demonetized.
The risks are real, and the consequences catastrophic. This is a mass-disabling event, and we're pretending not to notice; it's slow roll is making that easier. If we do nothing today, a decade from now our society will be utterly transformed.
We need to invest time and effort into changing the public perception, push for air quality standards to be enforced via OSHA and equivalent, and otherwise promote clean air standards in shared indoor spaces. People don't like wearing "masks" (fair, the surgical or cloth ones don't do much here, you need a proper N95 respirator or equivalent), but unless we have proper infrastructure in place, this is the only fallback.
The comparison to the (somewhat apocryphal) actions of Dr John Snow and the plague-spreading water pump in London's old SOHO has been made again and again -- the learnings from that time are what led the officials to build entire sewer and water purification systems, a basis which permit modern cities to exist. The same thing needs to happen today for the air which we breathe.
Content creators and online personalities with big followings have a responsibility to spread a science-positive, pro-social message like this. And if a call to a "greater good" falls on deaf ears - think selfishly. If a very popular online persona like Physics Girl can fade into obscurity overnight, what will happen to you?
https://www.whitehouse.gov/briefing-room/statements-releases...
> The Administration is focused on making sure medications developed with taxpayer funds are available to Americans at reasonable prices.
> In September 2023, ASPR finalized a Project NextGen contract agreement for a potentially life-saving COVID-19 treatment being developed by Regeneron stating if the product is commercialized, its list price in the United States will be equal to or less than its retail price in comparable global markets.
The big problem is 100% public perception. We have as a country failed miserably to further message the pandemic's second-order consequences. We need courageous public leaders to message this public health crisis in terms that will get through to people: i.e. economics, productivity, and the anguish of other human beings.
https://scholar.harvard.edu/files/cutler/files/long_covid_up...
The https://johnsnowproject.org/ has been a voice of reason here. We can go further with other innovations like far-UV lights.
https://www.cuimc.columbia.edu/news/new-type-ultraviolet-lig...
I believe Physics Girl is going to make a video on long covid or post-acute infection syndromes soon. Hopefully that can help bring additional awareness here.
We knew back in 2020 that LC is a thing, and what the treatments could look like [1]. Researchers at the time likened it to HIV, and did so with the treatments as well (a cocktail of antivirals).
1: https://www.nytimes.com/2020/06/26/health/coronavirus-immune...
They have done some dumb things too like calling the pandemic over, FDA limiting all use of life-reversing covid therapeutics due to "new variants", and allowing the first-gen covid therapeutics to be priced on the market (look how ridiculous paxlovid is for example or any recent vaccine).
I would not be surprised to see the CDC or NIH director, or even the president come out to talk about the elephant in the room early next year. While actions speak louder than words, I think many afflicted humans want to hear the words part too.
Then 7% of the German population, 5.5% of the UK population etc.¹, should, as a lower bound because that's only confirmed cases (with PCR afaik), have long covid now, based on OWID²
The percentage should probably be double or quadruple, if you consider how many infections are asymptomatic or not tested for other reasons (no wish/need for medical help, mistrust of "the system"..). (Edit: yeah double is about right for the part of people that will never even have considered getting tested: an article³ cites a study from 2021 in which 40.5% of people who contracted the virus had no symptoms)
In reality, I'm not seeing one in ten persons crippled from covid
¹ those are simply the first countries I checked because I expect them to have good data, but probably that's representative for any ~densely populated region
² https://ourworldindata.org/explorers/coronavirus-data-explor...
³ https://www.medicalnewstoday.com/articles/4-in-10-people-wit...
An epidemiologist I follow on Twitter correlated the StatsCan data with predictive models (which were showing the cumulative risk of LC given number of infections) and the numbers line up incredibly well [2].
> In reality, I'm not seeing one in ten persons crippled from covid
That's the tragic part: you will not see them, they're effectively invisible. Unless it's someone you know, who has suddenly faded from view -- how would you know? These people are staying at home, quietly tucked away, being taken care of by loved ones if they're lucky to have them.
[1]: https://www150.statcan.gc.ca/n1/daily-quotidien/231208/dq231...
[2]: https://x.com/DavidSteadson/status/1733246631959507246
The discrepancy probably lies in the "have had" part you mentioned. The majority of this group were never as severely ill as the person this thread is about, nor had any issues lasting this long. I know one person who said they got tired faster for a few months after contracting covid fairly early on, but it's not like their life was ruined (during that time, they partially stopped doing the sports that they enjoyed so that they had the energy at work and for household chores; afaik that was the main change it forced upon them beyond the first two weeks).
That is not to say long covid, or severe long covid, doesn't happen or to downplay the impact on those to whom it does happen. Diana is an undeniable example. I'm just disagreeing with the "you've got at 15% chance of »a debilitating, fully disabling, long-term illness with no known cures or mitigations« per infection, and the odds worsen further with every reinfection" part. That severity level is not quite that likely