3 ms·

Honestly, I feel like It’s pretty frightening that we may now have 5 to 15% (I didn’t find a consensus on this number but it seems that’s in this range) of huma

by pjerem 2y ago

Honestly, I feel like It’s pretty frightening that we may now have 5 to 15% (I didn’t find a consensus on this number but it seems that’s in this range) of humanity concerned with this exhaustion. This goes from making us "permanently" impaired and, maybe worse, more "stupid" (say, less clear mentally). I really don’t think our societies are ready to handle that. Though, I’m glad their research seems to go in the right direction. Then having a "solution" would be a huge step forward but we may also need a solid and simple way to diagnose the condition beforehand.

cenamus 2y ago
If you like thinking about those things, I recommend reading about CMV. https://denovo.substack.com/p/cytomegalovirus-the-worst-herpesvirus https://denovo.substack.com/p/cytomegalovirus-the-worst-herp... These non-fatal (or even close to unoticeable at all without statistics) diseases that still have massive world-wide effects are fascinating
- dotancohen 2y ago
  I had an CMV and EBV related sickness in 2017, it wasn't until 2021 or 2022, well into COVID, that I returned to anything near my previous ability to run, work late, or concentrate.
PaulKeeble 2y ago
In the UK a recent survey of medical staff has 35% of them suffering Long Covid, those are the ones still employed there are many who have been fired as their Long Covid is too severe to work. It's notable only 10% have been diagnosed by their colleagues, a substantially higher percentage the for non medical Long haulers. We are at about 20% in the countries still bothering to count and the front line roles like teachers and medicine are getting hit faster. Most of this is since 2022 and overwhelming Omicron onwards. In the past year for example the number of kids with Long Covid doubled. It's not just fatigue either despite what the BBC is presenting, it's completely systemic in every organ including the brain. PEM and the crashes it causes can permently reduce how much energy you have and if you keep doing that you can die as your gastrointestinal system looses the ability to digest food. There are no treatments, there is no research money now either. You get Long Covid you are on your own there is no medical help to be had and no government acknowledgement there is a problem and your chance of a diagnosis from healthcare is very small.
- teractiveodular 2y ago
  Those are some pretty extraordinary numbers. Do you have any cites to back them up?
  - PaulKeeble 2y ago
    This is the NHS questionnaire study https://pubmed.ncbi.nlm.nih.gov/39358009/ https://pubmed.ncbi.nlm.nih.gov/39358009/ This on 10-20% of infections leading to long Covid https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(23)00493-2/fulltext https://www.thelancet.com/journals/lancet/article/PIIS0140-6... Here is one prevalence study from Australia. There are loads of these https://onlinelibrary.wiley.com/doi/10.5694/mja2.52473 https://onlinelibrary.wiley.com/doi/10.5694/mja2.52473 Then there is the global estimate of about 400million https://www.nature.com/articles/s41591-024-03173-6 https://www.nature.com/articles/s41591-024-03173-6
- meiraleal 2y ago
  > In the UK a recent survey of medical staff has 35% of them suffering Long Covid Did they also ask how many people felt tired and in need of vacations? Love me some capitalism, re-framing labor exploitation again.
purplethinking 2y ago
I probably have a milder version of post-infection fatigue, it's not as bad as mentioned in the article (like having run a marathon), but it means that I never feel fully well slept no matter how many hours I've slept, maybe once or twice a month. Those days I almost cry from joy and don't really want to waste them by working, just want to exist and take in the moment. I can still work fairly well when I'm tired and I'm not physically exhausted, but this is enough to have essentially caused my divorce, because I don't have the mental energy to put into fixing and maintaining our relationship after a workday, and on top of taking care of our kid. It's sad to see my productivity drop as well compared to my past self, and I'm very worried that I won't be able to handle the grueling interviewing process when I need a new job. Self conscious that they will see the dark rings under my eyes and realize I won't be able to pull the hours they need.
- marliechiller 2y ago
  Sorry to hear about your divorce. I found the brain fog to be one of the worst factors in day to day life, especially with work. Thoughts of "did I miss this bug because of brain fog or was this something anyone would have missed" often run through my mind. Its hard to get people that havent experienced anything like this to really understand and the self doubt can cause a lot of stress. Sometimes its akin to early signs of dementia. I cant offer much support but youre not alone in suffering this
  - purplethinking 2y ago
    I'm thankful it's not worse, I have a friend who gets a fever from taking a short walk. In fact, since opening up it seems that many people are battling some form of fatigue or sleep issue. It does feel like dementia, you're right. In the past year I've lost my reading tablet, a $300 pair of head phones, a jacket, two pairs of gloves and a hat, two towels at the gym etc. I just keep losing stuff. What's weird is I can still solve complex programming problems, but it's definitely impacting my memory.
jmyeet 2y ago
We will be grappling with the impacts for at least a generation. To name a few: 1. For a time we had the largest impact seen on reducing poverty than we've seen in decades [1] but it was temporary. This goes against particularly American dogma against a social safety net. Another example of this was Bolsa Familia [2]. So we can no longer ignore that we, as a society, are choosing for people to be poor with all the negative externalities that comes from that; 2. Over a million Americans died from Covid yet we have a significant percentage of the population who think that Covid isn't real; 3. mRNA vaccines are a medical miracle that have been in the works for decades [3] and quite literally saved tens of millions of lives worldwide [4] yet antivaxxer sentiment persists [5], even with people who have a college science education; 4. We essentially returned to work to make the wealthy even wealthier and ditched our masks, which cost lives particularly for those who are immunocompromised and/or cannot take a vaccine for medical reasons. This starkly highlights how we, as a society, make a calculation as to how much inconvenience we're willing to tolerate over people dying.. This isn't new. For example, tens of thousands of Americans die every year in road accidents, many of which are preventable (eg excessive speeding, DUIs) and we just accept that's going to happen; and 5. Additionally, and this goes to your point, Covid was a mass disabling event. How our society treats the disabled was already disgraceful and it doesn't get much attention. A disability largely means society wants to discard you, or at least sweep you under the rug so other people don't have to think about you. I am of course talking about the so-called "ugly laws" [6]. While we largely don't have them now, it still exemplifies how we treat disabled people. [1]: https://www.cbpp.org/research/poverty-and-inequality/expiration-of-pandemic-relief-led-to-record-increases-in-poverty https://www.cbpp.org/research/poverty-and-inequality/expirat... [2]: https://www.worldbank.org/en/news/feature/2010/05/27/br-bolsa-familia https://www.worldbank.org/en/news/feature/2010/05/27/br-bols... [3]: https://www.nature.com/articles/d41586-021-02483-w https://www.nature.com/articles/d41586-021-02483-w [4]: https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(22)00320-6/fulltext https://www.thelancet.com/journals/laninf/article/PIIS1473-3... [5]: https://www.cidrap.umn.edu/anti-science/us-survey-reveals-growing-distrust-vaccines-embrace-untruths https://www.cidrap.umn.edu/anti-science/us-survey-reveals-gr... [6]: https://www.nationalgeographic.com/history/article/history-of-ugly-laws-america-disability https://www.nationalgeographic.com/history/article/history-o...
- 2y ago

by pjerem 2y ago

cenamus 2y ago

If you like thinking about those things, I recommend reading about CMV. https://denovo.substack.com/p/cytomegalovirus-the-worst-herpesvirus https://denovo.substack.com/p/cytomegalovirus-the-worst-herp... These non-fatal (or even close to unoticeable at all without statistics) diseases that still have massive world-wide effects are fascinating

dotancohen 2y ago
I had an CMV and EBV related sickness in 2017, it wasn't until 2021 or 2022, well into COVID, that I returned to anything near my previous ability to run, work late, or concentrate.

PaulKeeble 2y ago

In the UK a recent survey of medical staff has 35% of them suffering Long Covid, those are the ones still employed there are many who have been fired as their Long Covid is too severe to work. It's notable only 10% have been diagnosed by their colleagues, a substantially higher percentage the for non medical Long haulers. We are at about 20% in the countries still bothering to count and the front line roles like teachers and medicine are getting hit faster. Most of this is since 2022 and overwhelming Omicron onwards. In the past year for example the number of kids with Long Covid doubled. It's not just fatigue either despite what the BBC is presenting, it's completely systemic in every organ including the brain. PEM and the crashes it causes can permently reduce how much energy you have and if you keep doing that you can die as your gastrointestinal system looses the ability to digest food. There are no treatments, there is no research money now either. You get Long Covid you are on your own there is no medical help to be had and no government acknowledgement there is a problem and your chance of a diagnosis from healthcare is very small.

teractiveodular 2y ago
Those are some pretty extraordinary numbers. Do you have any cites to back them up?
- PaulKeeble 2y ago
  This is the NHS questionnaire study https://pubmed.ncbi.nlm.nih.gov/39358009/ https://pubmed.ncbi.nlm.nih.gov/39358009/ This on 10-20% of infections leading to long Covid https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(23)00493-2/fulltext https://www.thelancet.com/journals/lancet/article/PIIS0140-6... Here is one prevalence study from Australia. There are loads of these https://onlinelibrary.wiley.com/doi/10.5694/mja2.52473 https://onlinelibrary.wiley.com/doi/10.5694/mja2.52473 Then there is the global estimate of about 400million https://www.nature.com/articles/s41591-024-03173-6 https://www.nature.com/articles/s41591-024-03173-6
meiraleal 2y ago
> In the UK a recent survey of medical staff has 35% of them suffering Long Covid Did they also ask how many people felt tired and in need of vacations? Love me some capitalism, re-framing labor exploitation again.

purplethinking 2y ago

I probably have a milder version of post-infection fatigue, it's not as bad as mentioned in the article (like having run a marathon), but it means that I never feel fully well slept no matter how many hours I've slept, maybe once or twice a month. Those days I almost cry from joy and don't really want to waste them by working, just want to exist and take in the moment. I can still work fairly well when I'm tired and I'm not physically exhausted, but this is enough to have essentially caused my divorce, because I don't have the mental energy to put into fixing and maintaining our relationship after a workday, and on top of taking care of our kid. It's sad to see my productivity drop as well compared to my past self, and I'm very worried that I won't be able to handle the grueling interviewing process when I need a new job. Self conscious that they will see the dark rings under my eyes and realize I won't be able to pull the hours they need.

marliechiller 2y ago
Sorry to hear about your divorce. I found the brain fog to be one of the worst factors in day to day life, especially with work. Thoughts of "did I miss this bug because of brain fog or was this something anyone would have missed" often run through my mind. Its hard to get people that havent experienced anything like this to really understand and the self doubt can cause a lot of stress. Sometimes its akin to early signs of dementia. I cant offer much support but youre not alone in suffering this
- purplethinking 2y ago
  I'm thankful it's not worse, I have a friend who gets a fever from taking a short walk. In fact, since opening up it seems that many people are battling some form of fatigue or sleep issue. It does feel like dementia, you're right. In the past year I've lost my reading tablet, a $300 pair of head phones, a jacket, two pairs of gloves and a hat, two towels at the gym etc. I just keep losing stuff. What's weird is I can still solve complex programming problems, but it's definitely impacting my memory.

jmyeet 2y ago

We will be grappling with the impacts for at least a generation. To name a few: 1. For a time we had the largest impact seen on reducing poverty than we've seen in decades [1] but it was temporary. This goes against particularly American dogma against a social safety net. Another example of this was Bolsa Familia [2]. So we can no longer ignore that we, as a society, are choosing for people to be poor with all the negative externalities that comes from that; 2. Over a million Americans died from Covid yet we have a significant percentage of the population who think that Covid isn't real; 3. mRNA vaccines are a medical miracle that have been in the works for decades [3] and quite literally saved tens of millions of lives worldwide [4] yet antivaxxer sentiment persists [5], even with people who have a college science education; 4. We essentially returned to work to make the wealthy even wealthier and ditched our masks, which cost lives particularly for those who are immunocompromised and/or cannot take a vaccine for medical reasons. This starkly highlights how we, as a society, make a calculation as to how much inconvenience we're willing to tolerate over people dying.. This isn't new. For example, tens of thousands of Americans die every year in road accidents, many of which are preventable (eg excessive speeding, DUIs) and we just accept that's going to happen; and 5. Additionally, and this goes to your point, Covid was a mass disabling event. How our society treats the disabled was already disgraceful and it doesn't get much attention. A disability largely means society wants to discard you, or at least sweep you under the rug so other people don't have to think about you. I am of course talking about the so-called "ugly laws" [6]. While we largely don't have them now, it still exemplifies how we treat disabled people. [1]: https://www.cbpp.org/research/poverty-and-inequality/expiration-of-pandemic-relief-led-to-record-increases-in-poverty https://www.cbpp.org/research/poverty-and-inequality/expirat... [2]: https://www.worldbank.org/en/news/feature/2010/05/27/br-bolsa-familia https://www.worldbank.org/en/news/feature/2010/05/27/br-bols... [3]: https://www.nature.com/articles/d41586-021-02483-w https://www.nature.com/articles/d41586-021-02483-w [4]: https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(22)00320-6/fulltext https://www.thelancet.com/journals/laninf/article/PIIS1473-3... [5]: https://www.cidrap.umn.edu/anti-science/us-survey-reveals-growing-distrust-vaccines-embrace-untruths https://www.cidrap.umn.edu/anti-science/us-survey-reveals-gr... [6]: https://www.nationalgeographic.com/history/article/history-of-ugly-laws-america-disability https://www.nationalgeographic.com/history/article/history-o...

2y ago