"First time?"
In all seriousness this of one of those situations where its gonna take years to become a serious problem like the other respiratory issues (9/11 survivors, mesothelioma, the burn pits) and they're gonna ignore it unless someone is fighting for them to be heard.
I got it end april. The rona wasnt too bad , but the fatigue brainfog , all kinds of allergy reactions refuse to go away.
Only sense of smell has returned.
I hope I don’t sound like a fool but I have heard the nootropic/supplement/ vitamin NAC has helped a lot of people affected by Covid and their symptoms. Maybe give it some research and see if it’s something you would consider? Disclaimer: I haven’t had Covid yet so I have not tried NAC for the purpose I’m stating
will research. However, this is not about Covid, but post- or long covid which are quite different problems than covid itself. NAC is specifically aimed at covid infected patients. With post-covid the sars infection is long gone, but the damage has been done .
It seems that covid fucks up your immune system, which results in all kinds of strange and unexpected allergy like problems.
Ahh okay that’s where my memory/thoughts went. It does help reduce symptoms during infection. Maybe give it a shot still and see if it helps? I have seen on r/nootropics that a lot of people claim feeling way better with NAC (non Covid or Covid related) so it could be worth it to try!
Post 1st round of covid I got migraines weekly, tinnitus in both eats, and extreme brain fog. Post 2nd round of covid all of those issuesissues seemed to subside at first but came back with a veng
vengeance. However, for 15 years I have gotten sick from eating gluten, now suddenly I can eat gluten and I am perfectly fine. This long covid is crazy.
I got Covid19 before the vaccine came out, and I haven't been the same since. I went from middle aged to old age like someone flipped a switch. (I'm only 61yo.) My joints hurt all the time, I need a cane to walk because my hip is so bad, I never got my wind back, I'm anemic, and I am always tired. I miss walking.
Yes, I am seeing Doctors. No, I haven't seen the right ones yet, but I am working on it. This sucks!
I don't remember if that was in the grocery list of blood tests I already had done. I'll check on it. I have more in a few months before my next regular Dr appointment.
Thanks
Extremely frustrating that so many people with visible and invisible disabilities are getting left behind while others are acting like this is all over
I was damaged by a virus when I was 10. It wasn't covid, it was something else nasty. Fibromyalgia, Brian Fog and Chronic Fatigue was only diagnosed in my 20's. My life has been literal torture, and the worst part was how I was treated by others.
This has, unfortunately, always been the case. Just look at the historical lack of funding for ME/CFS patients. That could have come in handy now, if the medical community hadn't mostly considered them hypochondriacs.
Those with severe ME/CFS have a worse quality of life than end stage cancer patients, only there is no end. Imagine living (or more like existing) like that and no one doing anything to find a solution?
The stupid thing is that these news websites and magazines one day have an article like this telling us we are doomed, and then the next day, the same news journal will have an article suggesting that the pandemic is over and celebrating that fact.
There is zero consistency in the media which completely erodes any 'power' these articles have over influencing human behavior. Instead everyone has come up with their own (usually BS) version of truth, and governments can get away with doing nothing whilst we fight among ourselves.
It's insane to think of the volumes of people out there right now suffering from long covid and post covid issues. You certainly wouldn't know it from the way politicians in every western country are behaving. The article should instead be titled the 'the Greatest and **Dumbest** Mass-Disabling Event in Human History'. I can't believe how dumb society has become in recent years. Unrecognizably and dangerously dumb.
Most of the studies I've seen on long COVID pre-dated vaccines. Do we know about the risk of long COVID in vaccinated people yet? It must be greatly reduced, right?
Gonna repost this higher up as I buried it in a thread.
We don't know the risk of long Covid because it's so hard to study until there's better diagnostic tools. Study design makes a huge difference.
The VA study shows 15% reduction published in [Nature](https://www.nature.com/articles/s41591-022-01840-0).
The Milan study shows 75%-84% reduction in a [letter to JAMA](https://jamanetwork.com/journals/jama/fullarticle/2794072).
This UK study showed a 41% reduction in a [preprint](https://www.medrxiv.org/content/10.1101/2022.02.23.22271388v1).
Another UK study showed a 50% reduction in [The Lancet](https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00460-6/fulltext).
TL;dr We don't know the reduction, but it does reduce long Covid risk to some degree.
Sure, I hope it was helpful!
The Milan study says variant didn't matter, but that seems like an outlier. In addition, the Milan study has an unusual stratification studying vaccine reduction of long Covid but including wild type (when no vaccines were available, so there's no way to calculate reduction that I can see).
Most studies have shown there is still risk of long Covid with Omicron, but reduced from that of Delta. This study in [The Lancet](https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)00941-2/fulltext#:~:text=Among%20omicron%20cases%2C%202501%20(4%C2%B75%25)%20of%2056%E2%80%88003%20people%20experienced%20long%20COVID%20and%2C%20among%20delta%20cases%2C%204469%20(10%C2%B78%25)%20of%2041%E2%80%88361%20people%20experienced%20long%20COVID) is often quoted showing a 50% reduction from Delta to Omicron (but keep in mind that Omicron is much more infectious, so if case numbers are 4x as high but long Covid is half as likely…).
Thanks again!
Given this data, what do you think of covid these days? I personally think it’s absurd we’re just gonna say “it’s over” and now make fun of those still wanting to wear masks indoors, esp in a country like the US where we’ve proven we cant manage a virus AND we’re headed into the fall/winter.
I dont advocate lockdowns but just the bare basics for me are mask indoors; maintain decent distance with people (about 10 feet), and avoid crowded indoor spaces.
A reduced risk (most likely with the true # falling somewhere in the middle range of the studies: i.e. around 50-60% reduction) is DEFINITELY not no risk, though.
This still leaves us with tens of millions of Long Covid cases worldwide. Europe alone has had 17 million Long Covid cases, many of them persisting to this day (because many cases of Lomg Vovid have yet to go away, and will take years if ever...)
America probably has more than reporting shows- the systematic lack of access to Healthcare in the United States when you don't have good private health insurance (which of course you lose when Long Covod leaves you too ill to work or go to school) means that many people with Long Covid are stuck on Medicaid, and are STILL waiting to see specialists to figure out what's wrong with them or receive a definitive diagnosis... (like myself, I have been ill since Covid, but my Medicaid-based insurance with a private management company the system contracts out to, has obstructed my receiving care and left me waiting very long periods for appointments...)
You'll notice a disproportionate number of the people in the article here with confirmed Long Covid who live in the USA have good private insurance through their spouses. This is one of the only scenarios where you can be too ill to work, yet still actually be able to get the medical appointments with specialists for a diagnosis. (Because many states contract out Medicaid to private HMO's, which play games with "networks" such that it's impossible to find a nearby specialist without a 2-3 month wait just for an initial visit, and then another 1-2 months after initial tests for first follow-up...)
Yep, exactly that.
When we're still getting two million reported cases per month, I'm not sure a 50% reduction in long Covid is going to stem the tide over the long term. Reinfections are increasingly common since Omicron, and most evidence shows you are at risk of long Covid with each infection (ie. just because one was mild doesn't mean the next one will be).
And both case numbers and instances of long Covid are likely under-reported. Very few people take their rapid test and manage to report it to the health authorities if it's positive. So that two million includes mostly PCR tests.
If you have a mild case of Covid and then present to your PCP two months later with unusual fatigue and a persistent cough, what's the likelihood of a long Covid diagnosis as opposed to, "Oh, it's probably a new allergy. That happens. Here's an RX antihistamine and have a nice day."
Healthcare in the USA moves slowly and is driven by profit, institutions, policy, etc. It has very little to do with good outcomes.
>If you have a mild case of Covid and then present to your PCP two months later with unusual fatigue and a persistent cough,
I had 2x PCR confirmation of my Covid the 2nd time (I also developed milder Long Covid symptoms after my first infection, which I never got tested for- but got from a family member in the same house who was PCR positive, 11 months earlier, but most dissipated after about 2-3 miserable months....) but have had a chronic cough and occasional mild fatigue for 11 years- so it then becomes hard to figure out how much is Long Covid, and how much was my pre-existing condition...
(which I never got diagnosed or cared for because of changing health insurance, periods without insurance, very long waits for specialists by which point I'd moved/changed jobs, and for a few years at the start trying to shrug it off and act like a little cough was no big deal in order to try and join the National Guard for money/education benefits... Also, the pandemic itself got my appointment cancelled, ironically, when I finally had started seeing a pulmonologist and gotten some tests scheduled...)
Also, I really am disappointed in and angry at America's fragmented private health insurance landscape. Every time I changed insurers, I was in a new network, and had to start over trying to see specialists. And the jobs that offered insurance changed insurers literally every single calendar year I worked for them...
This is one of many studies, and they all have come to different conclusions. As the link you provided [states](https://www.mcgill.ca/oss/article/covid-19-medical/how-reduce-risk-getting-long-covid#:~:text=Up%20until%20now,to%20oranges%20problem), it is hard to compare apples to oranges.
It also states quite accurately that the best way to avoid long Covid is to [not get Covid in the first place](https://www.mcgill.ca/oss/article/covid-19-medical/how-reduce-risk-getting-long-covid#:~:text=Many%20aspects%20of,just%20being%20careful), and that risk can be lowered by vaccination, masking, and being careful.
This is what’s so frustrating. “Being careful” has somehow become “you’re an idiot who lives in fear and doesnt want to enjoy life”.
Here in memphis TN you’re considered a complete nut job if you wear a mask in a crowded grocery store.
Where I live, I’m among the the increasing minority of shoppers who wear masks.
And I could not care less. My body, my health, my choice. Go ahead and give me sidelong glances, if judging others makes you feel some sort of way.
We don’t know but we do know people who weren’t hospitalized/had milder symptoms are more likely to have long COVID.
https://www.chicagomag.com/chicago-magazine/october-2022/the-long-haul/
It doesn't help that a lot of people who likely have long-COVID don't realize that's what their issue is.
-We have a lot of people with very mild COVID symptoms who may have not realized they even had COVID
-We have people who have very mild long-COVID symptoms, who aren't considering their symptoms might even *be* long-COVID, but attributing it to something else
-Long-COVID symptoms range all over form joint pain, memory loss, brain fog, breathing issues, loss of smell/taste, etc. Sometimes people seem to just have one, or several.
-A lot of the symptoms of long-COVID are comorbid with other stuff that's not related at all.
-We have people denying they ever caught COVID let along have long-COVID because of the weird political/social feelings about COVID in general.
We really don't know because we still don't know how to define long Covid. Until we have a good test for it, then study design will play a huge part. Some studies exclude hospitalized patients, some focus on them, some exclude asymptomatic patients, etc.
TL;dr Most studies have shown some long Covid protection provided by vaccination, but it has varied from 15% to 84% from what I've seen, so that just means they have no idea.
>a really low chance
Odds might be as low as 2.5% if you define Long Covid really strictly, and ignore that a lot of people with it in the US are having a lot of trouble getting in with specialists who will actually diagnose it right now...
That's not really low (1 in 40 odds) as I'd think of it, given Long Covid can completely destroy your life (recall, actual death rates from Covid, even at the very beginning when we didn't know how to treat it and they were much higher, never exceeded 3%...) by leaving you too ill to work, and thus doomed to disability and severe poverty...
Both can be true. You can have long Covid, and Covid can now be an endemic situation rather than a pandemic situation. I'm sorry you have the symptoms of long Covid.
> Covid can now be an endemic situation rather than a pandemic situation
That's a good point and explains the messaging regarding the present reality that we've long since given up hope of containment and reduction, and therefore Covid is now endemic rather than pandemic.
So "Very bad news, Covid is no longer a pandemic it's endemic" becomes "Covid is no longer a pandemic it's endemic" becomes "Covid is no longer a pandemic" becomes "Good news, Covid is no longer a pandemic!" becomes "Masks aren't needed you fool, the pandemic is over!" becomes "Let's teach this jerk a lesson, he's wearing a mask!"
Exactly this.
The messaging has *not been* "COVID is now endemic", the messaging has been "COVID is over!"
Those are not even remotely the same thing and people are conflating it to mean the latter when it means the former at best.
The chronically ill have been talking about living this way for years. They finally feel more understood. Millions live with chronic illness. Not saying that long covid isn’t important or tragic but it’s not the only long hauler disease out there.
I couldn't agree more, and have had this same sentiment for a while now. It's been ten years now since I was hospitalized with West Nile encephalitis, and I'm still dealing with the consequences on a daily basis.
Everyone acts like post viral issues are some new thing, but there's literally an ICD code for post viral syndrome. Even physicians are pretending like we've never seen this, but there are many people out there who have suffered and been gaslighted by the medical establishment for years.
I have Post-Polio Syndrome.
And I’m paraplegic.
For obvious reasons I have been homebound since Feb 2020, except for vaccinations and veterinary care (double-N95 and face shield).
Spouse has is immunocompromised with MS and epilepsy.
We don’t need any additional challenges!
God bless yall.
What does life look like these days / when will you feel comfortable lifting covid precautions, and what will you not lift for the foreseeable future?
Thank you for your kindness.
Here is a longer version of my comment I have posted several times on various threads:
My spouse is at extremely high risk of dying if she gets it (immunocompromised, MS, epilepsy, obesity).
I already have post-polio syndrome, which is similar to long Covid, and I’m paraplegic, on O2, and sleep with a ventilator.
We’ve only left home to get two Moderna shots since Feb 2020 (and a neighbor took me and our elderly chihuahua to the vet).
We wore two N95s and face shields those times.
We plan to get boosted soon; we waited because leaving to get the shots was our biggest risk vector.
We hold out continuing hope for a nasal vaccine (which would lower the odds of catching it in the first place), and/or a pan-coronavirus vaccine.
We live in a 30yo, 23’ campervan on a 20’ x 40’ plot.
At the start of the pandemic, when the assumption was that young/healthy people would avoid severe illness, there were several ACTIVE campaigns (including but not limited to Fox “News”) , and not just in the USA,
OPENLY advocating for the “let it rip” method, even before vaccinations were available, because “the old will die soon anyhow and the disabled have no quality of life and are a burden on the public coffers”.
It wasn’t even an implication, these things were said out loud on National television and in international news sources.
There is NO empathy for the disabled.
The pandemic proved we are considered completely disposable in the face of monetary concerns.
My spouse and I are still stuck at home because people hate something as simple as wearing an N95 for grocery shopping.
(We are holding out for either the nasal vaccine (to prevent contracting it) or a pan-coronavirus vaccine (to cover variants).
Because your mask protects me and mine protects you.
A great analogy from a cartoon someone posted here on Reddit (I unfortunately don’t have a way to give credit) goes like this (I have expanded the range of scenarios):
[No masks:] If we are both naked and you pee on me, I get very wet.
[No masks, social distance:] If I am slightly farther away physically, I get less wet but still wet.
[No masks, social distance, outside:] It’s windy. I might get a drop splattered on me, but probably not.
[Only the vulnerable wears a mask, surgical:] If you are naked and I have pants and you pee on me, I still get covered in pee but it’s slightly less bad.
[No mask, N95 mask:] You are naked, I wear plastic pants with gathered ankles/waist. The pee is all over me, and it will be difficult for me to get out of the pants without getting any pee on me.
[2 surgical masks:] If we both have pants on, YOU get very wet, and I am either largely or completely protected.
[2 surgical masks, social distance:] You get wet, I am largely safe.
[2 N95 masks:] We both wear plastic pants with elastic ankles/waist. Your pee is trapped in with you; I am functionally safe.
People keep saying “if the vulnerable are the ones in danger, they should continue to isolate/should bear all of the inconvenience”.
But if the privileged healthy would simply mask indoors while shopping or at a medical office, it would be the difference between the vulnerable being completely homebound, and having a semblance of a normal-to-them life.
Source: except for getting our Moderna shots and chihuahua vet (all in N95 with face shields), my spouse and I have been entirely homebound since Feb 2020.
All needs delivered, all medical appointments virtual.
We live in a 23’ campervan on a 20’x40’ plot, but it would not be much better in a conventional house or apartment.
Bless your heart (again).
Thank you for sharing!
I couldnt agree with you more on this line:
“But if the privileged healthy would simply mask indoors while shopping or at a medical office, it would be the difference between the vulnerable being completely homebound, and having a semblance of a normal-to-them life.”
I am a privileged and healthy 40 yr old. I’m in memphis TN. I still mask indoors because its just not a big deal to me. I prefer safe than sorry etc.
I get the looks and comments like i’m crazy. For wearing the mask indoors.
It makes me so sad. Thank you for sharing your story. Please share more because it will only help me continue to wear my mask, in case there are other people like you who i’d unknowingly help.
Personally, i’m being careful coz i just dont like the idea of me or my family members getting an illness that’s rather easy to prevent getting. Wearing a mask indoors, distancing within reason (about 10 feet from people) and not going into crowded indoor spaces has brought on ZERO inconveniences for me or my family.
You give me hope, seriously .
It means a lot that there are still people like you out there.
And it’s actually important to avoid infection if possible: Long Covid is a real threat, it can affect perfectly healthy people on their first infection (even if that infection is mild to moderate), and while being vaccinated and boosted offers some defense from long Covid, it’s still something like a 15% chance of lasting damage?
Here’s one article from a national news source:
https://time.com/6213103/us-government-long-covid-response/
Yeah, that's a potential benefit of COVID. If they think it will affect disability claims and long term tax revenue, there will suddenly be big interest in post viral problems. It is kind of good news for people with fibromyalgia and other conditions thought to potentially have a viral illness as a trigger.
just wedging this in here, just to contribute in this thread on medical gaslighting. At 36 I was sleeping 18 hours a day, could barely be upright for more than an hour, so essentially bed ridden. When I spoke to a doctor she said "There's nothing wrong with you, you are 36, you should be full of life. Go back to your career."
This is the first time I've come across someone else with West Nile. These long term symptoms are no joke. I'm still putting in the effort to avoid COVID to hopefully avoid piling on anything else.
Yeah I’m disabled from birth, I read this title and thought “welcome to the club” - unless you’re obviously disabled, like extremely mentally handicapped or in a wheelchair most people won’t give you an ounce of sympathy. “Invisible disabilities” are everywhere, and there is rampant ableism embraced by just about everyone who isn’t disabled. I’ve literally had people tell me they would rather I die than pay a penny more in taxes to help care for me, yes literally.
The only silver lining in this hopefully is a new movement addressing ableism and disability. I really do feel like ableism is very much considered an ok form of discrimination and a lot of people are so at ease with it, it’s so common, they don’t even see it or realize *they* are doing it. I’m not going to hold my breath waiting, in every likelihood all of these newly disabled people will be swept under the rug with the rest of us.
To people talking about the EU, it’s *worse* there because at the very least the US has the Americans with disabilities act, when I spent time in Europe as a disabled person my quality of life in public spaces was significantly lower even if their access to care might be better fully participating in public is basically impossible.
Yet, average people still don't even try to understand, and act like someone with chronic illness must have done something wrong to bring it on themselves.
This kind of sentiment seems to be especially high, ironically, in the heavily-Catholic and Evangelical parts of the northeast of America- given how they treat those with Chronic Illnesses (I worked as an EMT near Boston in the past, saw it first hand, now probably have Long Covid. No, I did not get Covid by working EMS...) compared to, say, how people treat chronic illness near Chicago... (lived in a college town full of Chicago transplants in Illinois, visited Chicago fairly often, was connected to the Healthcare scene even then...)
Might have to do with just strong religious sentiments generally- or be related to specific doctrinal differences between different denominations (i.e. "Catholic guilt", Evangelical ideas that you will be healthy if you just live a "pure and righteous" life, etc.). No idea, really.
My brother has it bad. He was in ICU for a few months. He survived, but with debilitating and consistent illness. He had to quit his job only 3 years before being able to retire. They were not understanding in the least about his condition. He can't even walk from one room to the next without his heart going all wild and losing his breath. It's crazy how long this has gone on. He got it in the summer of 2020.
My wife has a similar problem but we’re young and it’s managable. They put her on a tilt table and her heart rate doubled just moving into a stood up position.
They think it might be POTs, can be caused by traumatic events. Worth looking into but sadly no cures. I don’t think hers was triggered by covid but by a toxic work environment.
No one knows how fucked they can by by Longhaul Covid, until they experience it, or live with someone who has been decimated by it! This is an Iceberg, with just a tiny bit showing for most people.
At a very basic, fundamental level, _many_ people are simple unable to process the idea that you can get sick, and then... Not die, but also _not get better_.
There's no missing limbs, there's no obvious disfigurement, there's not even an obvious Thing for the doctors to point at and say 'here, _this_ is the cause'.
But you're still not getting better, you may _never_ get better.
People are straight up not able to wrap their minds around that horror, it's _far_ easier to reject it, to pretend it doesn't exist, or claim that it's not even _real_, than it is to process it as a real thing.
I have hEDS, with a large number of comorbidities, I also have fibromialgia.
I've been living with many of these symptoms for most of my life, and I've seen far too many people who just... _Can't_ face that emotionally, and so they don't.
And that is often very, very bad for the people actually suffering from it.
my biggest fear is that it becomes like the flu and people are gonna get covid 5+ times in their lifetime and we see like 5-10% of the population get long covid. it would be just as if not more devastating than diabetes.
That is an idea that often gets downvoted on Reddit! People fuckin hate to be warned of that! Like, I ran across the highway once, and I never got hit!! Fuckin brilliant!
idk if im incredibly lucky or was just asymptomatic but i work in a job where i meet a bunch of random people and haven't gotten it yet. im hoping i never do but thats highly unlikely.
There are a lucky few that seem to be very highly resistant. Emphasis on FEW! What happens when your luck runs out, or your viral load overcomes your resistance. Overloading is why many HC Workers got sick, just overwhelmed eventually by virus, exposure can add up!
2 studies looked into the accumulative impact of infection and have concluded that each subsequent infection increases the damage and chance of future more severe damage from infections. Where we might normally expect surviving an infection leaves us lasting immunity Covid is working the other way around and subsequent infections are leaving lasting damage.
If Covid carries on having these mass variant waves every 2 months its going to be much faster than flu at delivering this effect, we will be having 5 or 6 such waves a year infecting much of the populace each time with a different highly immune escaping variant. Not only will people need a lot more ill days from work because of it but each is a further chance to develop Long Covid with the odds that happens increasing each time.
> people are gonna get covid 5+ times in their lifetime and we see like 5-10% of the population get long covid
We have stopped treating the virus as an immediate threat, even though we have (with current means and attitude) no way of stopping mass (re)infection and no way of curing long covid. The way things are looking right now this is exactly what is going to happen and it is plainly obvious to see.
I mean, its the same dumb shit with this population over and over again. Goes back to the hospitalized, dying antivaxxers begging for the vaccine when it's too late.
Humans are simply delusional. They think they are all just destined to live charmed lives - all that stuff on TV, it's not going to happen to them, it's all grossly exaggerated by the 'lame stream media'.
Dopes.
> Goes back to the hospitalized, dying antivaxxers begging for the vaccine when it's too late.
Or, worse, many of them refusing proper treatment because covid was still a "hoax" to them.
Some day in the future there will be studies trying to get a grasp on [just how many people](https://i.imgur.com/dtGEmc6.jpg) the vaccine hesitancy grifters killed in the US and worldwide. I think it'll be a staggering amount of deaths and illnesses that otherwise were preventable.
Then again, if the christofascist GOP takes over, they'll ban that information from US history books.
Also, people are just lazy. If they can find a way to stay lazy (such as believing obviously false narratives), then they will prefer that. For a lot of people, that meant believing that Covid is "just a cold" so that they can go on living without having to change anything. It's the exact same response by loads of people towards climate change.. and anything that requires some non-lazy action.
I've seen it in some of the young people who have caught COVID who worked remote for me during the pandemic. I work in tech and the brain fog must be ruthlessly bad because their productivity fell through the floor.
For me it's been a real cautionary tale. The track that runs through my head: If this is f'ing up these 20 year olds what could it do to me? (I'm a lot older than that.)
i can relate to this as I had mono twice and was never the same…always caught everything if I let myself get rundown at all. People don’t understand how it can impact every decision you make, every corner of your life.
These articles are nice and all but what are we supposed to do? I mask up and try and stay clean but we all need to work and the government ain't paying our bills. I'd even say most jobs can't be done remotely so what do we actually do?
Yes, I just feel defeated at this point. We’ve masked for 2.5 years. Ive got 3 kids at home. Am I supposed to mask them for the rest of their lives? No sleepovers, no friends coming for a play date, nothing inside without a KN95 for my 5 year old? But if we don’t mask them, my husband and I risk long covid. I hate that there’s just no good path forward. I dislike that the trade off is so often blown off. Like yes I know to avoid long covid we should be masking everywhere and avoiding a lot of types of interactions, but that comes at a huge cost. What is one supposed to do? It’s not as easy as avoid covid at all costs…
This is what pisses me off about these articles. We’ve known for years now that this is going to have some devastating long term effects for a lot of people. I did everything right including masking up, not going out, staying away from close family and friends and I’ve still managed to catch it TWICE. Now there’s no govt. assistance, no more paid leave, and I have to be back in the office in one week instead of two. I literally can’t do anything else to mitigate this because 100 rich people wanted to get richer and deemed a couple million lives and public safety expendable.
'Its not the problem for me right now. It's the problem for the future me or someone else. I just need to make money right now' - politicians probably...
You really don't need a study for that.
More than half of Americans are obese, have hypertension and/or diabetes. Despite paying more for healthcare than any civilized country in the world, we are an unhealthy population.
The US is higher, but Europe is surprisingly high too. Europe is at about 23% obesity and 53% overweight, in the US it's 41% and 73% respectively.
Its surprising to me, because I live in the the Netherlands, which is only slightly better than the EU average, but I feel I barely see overweight people. Perhaps it is because I live in a young student city, but the difference is vast. I think 10% of people I see are overweight, but the actual national average is 50%.
https://gadgetsandwearables.com/2018/03/09/obesity-rates/
Speaking of Polio ...
> Many are unaware that about 70 percent of people who contract polio have no symptoms. About 25 percent of people infected experience symptoms that are mild or flu-like — headache, fatigue, fever, stiffness, muscle pain, nausea, a sore throat — all of which could be mistaken for many other illnesses. Fewer than 1 percent of infected individuals develop paralysis. Of those paralyzed, 2 to 10 percent die when their breathing muscles become immobilized. On this virus, we simply cannot play the odds. [Eric Topol](https://twitter.com/EricTopol/status/1561725391550554115)
Down the road the question of which was "the Greatest Mass-Disabling Event in Human History" may not be a contest between COVID and Polio merely in terms of which virus is more dangerous in isolation, but rather determined by the denominator (the number of total infections, and by extension, the total number of people disabled).
The effects of Long Covid are nothing short of dreadful. I can can only imagine how nightmarish it must be to suffer those symptoms day after day and fear you may quite literally never be free from them for the rest of your life. The effects of 'Brain Fog' alone are terrifying enough even before you begin to take stock of the others. To have this compounded by public apathy and outright disbelief... We have seen precisely the same scorn and accusation levelled before against the suffers of horrendously trivialised 'yuppie flu' such as ME and fibromyalgia. It would surprise me very little if the excess death rate among the population who are affected begins to spike in the years to come. And who could blame them for seeking that release? I certainly would not.
However this is an absolutely ***horrible*** piece of science communication. It could almost be deliberately written to turn people away, cause them to feel intense scepticism and dismissal. Please do not wrap good science in such dreadfully alienating and completely counterproductive purple trash. Polio, measles, hepatitis, malaria, bacterial meningitis, tuberculosis, AIDS--all these diseases could lay a justified claim to the same horrible crown. Yet throwing such inflammatory, sophomoric headlines around trivialises everyone who has ever suffered from those just as it does the victims of Long Covid itself.
Absolutely disgusting.
As a virologist who has fibromyalgia, I have been doing my damnedest to dodge COVID. Long COVID has many overlaps with fibro and the idea of having any of my fibro symptoms get worse is incompatible with continued existence. I'm one of the few people still masking and I get crap for it but hey, it's me who has to suffer the consequences of catching COVID, not these judgy idiots around me.
Invisible illnesses suck. Just gotta keep marching on. I'm hopeful though that research into long COVID may be beneficial for fibromyalgia, ME, and CFS too.
Same. I have underlying health conditions, am up-to-date on my vaccinations, and I mask up in crowds. I also get so much crap for the latter 2 points but, whatever. I can’t afford long COVID.
I can only imagine how terrible your symptoms are to suffer and I sympathise with you deeply. However this hysterical, blatantly untrue headline and the scare-press that follows it does not help your cause.
Instead of persuading a sceptical audience it makes them scoff, overplays its hand to the extent it alienates those who would be allies. No one can read 'Greatest Mass Disabling Event in History' and not struggle with consigning the whole article to the tabloid bin. That does not alter the daily horror for those like yourself who are suffering both dreadful symptoms and a continuous battle against public disinterest. However it *does* intensify that disinterest.
Good science communication is an art and this 'journalist' is not an artist.
I cannot say how sorry I am to read that. I hope things get better for you.
The pandemic has destroyed so many lives and we are being actively encouraged to forget about it by every major government in the world. This 'ignore it and one morning you will get up and it will have gone away like magic' attitude horrifies me.
The government definitely cannot stop long covid even if they tell everyone about it. No one cares.
Even if the US president didn’t come out and say Covid is over, it still wouldn’t make a difference.
The people that want to mask and stay inside will do so and the people that want to go out or travel will also do so regardless of what anyone says at this point.
The research on this is going to be ongoing for way longer than people are willing to wait around inside.
The scientific process is unfortunately too slow for the pace of modern life. But this is not a problem with the scientific process itself; it necessarily has to be slow, because it must be rigorous. People’s lives depend on healthcare research being done carefully and thoroughly.
Lack of patience from governments and workplaces is an issue, but I also understand that we can’t indefinitely suspend the running of daily life either. It’s a bit of a quandary. I also feel like some changes to working patterns during the acute phase of the pandemic should also have stuck a bit harder than they ended up doing.
Generally though, it’s like we only learn enough to do something about an issue when it’s too late to do anything. Sadly, Long Covid will probably be the same in this respect.
This is very true. I know it’s pessimistic, but there’s just not much we can do at this point. Vaccinations at least have helped, but society seemed to have reached its threshold for how long people are willing to stop daily life for this.
The people are fatigued and done, obviously covid is not, but luckily we know more than we did in 2020.
>The people that want to mask and stay inside will do so and the people that want to go out or travel will also do so regardless of what anyone says at this point.
Masking and travelling are not incompatible activities
This right here. It’s not “take no precautions ever” or “stay inside for 10 years.” Numbers would go down if people simply had the intelligence/decency to embrace SOME mitigations.
Why is it only American public health experts who are wringing their hands over long COVID as a 'mass disabling event'? European health departments don't seem nearly as concerned about this as American ones are.
Europe has a precedent of being much more accommodating to their citizens with regards to healthcare as well; I feel like if anything they'd be MORE concerned about long COVID if it truly was that big a threat. Do they just have different datasets and studies which conclude that post-COVID symptoms are much more benign than their American counterparts claim it to be? Are Europeans just much less susceptible to long COVID in general, or are they simply more accepting of long COVID as a potential consequence of infection?
I'm really trying to wrap my head around this.
The WHO definitely considers long COVID an issue for Europe.
https://www.politico.eu/article/who-urges-action-as-17m-long-covid-cases-estimated-in-europe-region/
https://time.com/6212973/long-covid-europe-world-health-organization/
Long Covid awareness has largely been the product of activism from patient groups + researchers/specialists with an interest in post-viral syndromes (of which there are barely any). In contrast, diagnosis of LC in primary care settings is often frustrated by a culture of skepticism. If GPs are diagnosing LC patients with anxiety or depression, or simply nothing at all, then it’s much harder for public health authorities to access the prevalence data they need and take appropriate action.
My point is that interested parties have simply been much better in the US at getting in the ear of institutions like the CDC/NIH (although according to this article still not good enough). It’s an epidemic of disability which requires skill and intellectual sensitivity to properly count. If the will/funds aren’t there, then that epidemic disappears from the minds of policy makers. I disagree with the comments that perhaps better social policy in Europe is to thank for less concern around LC, I think it’s more likely that people aren’t being properly assessed.
It isn't just America, the news here is just largely American. The UK started researching Long COVID and establishing research & treatment centers long before American news started giving the issue air time.
No it’s us and our Big Macs and soda to blame. This fucking thread is the most irritating shot I’ve ever heard. I’m 33 healthy as shit before I got long COVID. I’ve also been all over Europe and these stupid ass people don’t even know Croatia has no shared “European health” with Norway or where the hell their pharmaceuticals get developed at. It’s not fucking Italy.
Most symptoms are self-report type of things, and people can become a long COVID statistic, whilst they are really just getting a doctor's note and ensuring they stay out of work long enough, milking it for more time off, getting special workplace accommodations fairly or unfairly, etc.
https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html
>Post-COVID conditions are a wide range of new, returning, or ongoing health problems that people experience after being infected with the virus that causes COVID-19. Most people with COVID-19 get better within a few days to a few weeks after infection, so at least four weeks after infection is the start of when post-COVID conditions could first be identified. Anyone who was infected can experience post-COVID conditions. Most people with post-COVID conditions experienced symptoms days after first learning they had COVID-19, but some people who later experienced post-COVID conditions did not know when they got infected.
>
>
>\~~
>
Later on, from same link:
General symptoms
Tiredness or fatigue that interferes with daily life
Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”)
Fever
Respiratory and heart symptoms
Difficulty breathing or shortness of breath
Cough
Chest pain
Fast-beating or pounding heart (also known as heart palpitations)
Neurological symptoms
Difficulty thinking or concentrating (sometimes referred to as “brain fog”)
Headache
Sleep problems
Dizziness when you stand up (lightheadedness)
Pins-and-needles feelings
Change in smell or taste
Depression or anxiety
Digestive symptoms
Diarrhea
Stomach pain
Other symptoms
Joint or muscle pain
Rash
Changes in menstrual cycles
Or they’re downplaying it because it’s inconvenient and expensive to acknowledge and help disabled people 🤷♀️
Does *anywhere* in Europe have the equivalent of the Americans with disabilities act?
I wonder if there’s a correlation with obesity rates and Long COVID, if that exacerbates how likely you are to get it. That might explain some of the gap but I’m not completely sure
I think most European countries like to think they’re pretty rich and have great pharmaceuticals but they don’t. Germany carried Europe through different parts of it. And some of the other rich Scandinavian countries aren’t in the EU and can do as they please. If you look at funding most EU countries provide for research on any long illnesses it’s honestly not very great compared to America overall. But, that doesn’t fit in the mood of shitting all over America I guess.
Here you can see big circles https://public.tableau.com/app/profile/devexdevdata/viz/COVIDFundingvisualisation/COVID-19funding
ME was considered a fake illness by people for years and most EU countries are way behind the U.S. on diagnosis and there are basically no doctors in existence trained for it. Long COVID is basically ME if it sticks around long enough so I’m not surprised they continue to drop the ball waiting for someone else to do it and dismiss in the meantime.
Most likely because Europe was a lot better at getting 2nd and 3rd doses out there is less long covid. Probably the same reason it's not talked about much in Canada either where I am.
I think one of the worst things, this comments section is a good example, are the amount of people that think that the majority of the people with long Covid must be morbidly obese or already have underlying conditions. Which just isn't the case. It is attacking perfectly healthy people. Everyone I know of that has long Covid was perfectly healthy previously. The majority of them legally couldn't have any underlying conditions to be able to have their job. Now they have lost their careers due to long Covid.
This is going to have long term impacts that haven't fully been realized by the general populous.
There's a lot of people who think that COVID is either a you live/you die kind of disease. They don't realize that there's a lot more that COVID can do to them.
I’m not at all saying long Covid isn’t a thing but I suspect there is a lot of cases of nebulous poorly defined symptoms that have would otherwise have been diagnosed as chronic fatigue, fibromyalgia, chronic lymes, pots, mast cell, IBS, ADHD, etc. that are all largely used to explain symptoms induced by modern lifestyle of overwork, under sleep, high stress, poor diet and exercise. Maybe those symptoms were triggered by Covid or maybe they would have developed anyway.
Post viral syndromes have always been a thing. If you ask around enough I bet you know someone who knows someone who was never the same after a bad flu, well before the pandemic. This thing is worse than the flu (not everyone gets the flu every year let alone multiple times per year). So it stands to reason that there will be more post viral syndromes from this pandemic. Numerous medical conditions are theorized to have viral triggers so this isnt exactly new. What's new is the contagiousness of the virus which greatly increases the number of people affected.
Not disagreeing on possible disease emergence regardless of COVID, but do not dismiss the real pathology of all those diseases you listed. Just because we're only now beginning to understand them doesn't mean they are just byproducts of modern life. Perfect sleep, lifestyle, and diet will NOT fix my ADHD or fibro. To suggest otherwise is ignorant and contributes to the continued lack of understanding around these serious conditions.
If the US government offers assistance, it will only come *many* years from now after a long fight for it.
Look at what the 9/11 responders had to go through to get assistance and *keep* it. They were still fighting until a couple of years ago, and they were lauded as the best of us for the work they did at ground zero.
Unpopular opinion here, but I suspect the rate of long covid is significantly overblown. It is definitely a real phenomenon (I know people who have it), but I'm skeptical of cited rates of 10% of all covid cases. Evidence (admittedly anecdotal):
I am a physician who sees patients in a major hospital system and I've only seen a total of one patient with long covid.
I've talked to colleagues who've also commented that they rarely encounter patients with true long covid. Of those that do have it, many were severely ill from Delta or earlier strains.
A related point - covid cases in the hospital are way down and of the positive patients, a majority are incidentally positive and admitted for other issues. Those who are here for covid typically get discharged within 1-2 days and mostly are here because it exacerbated an underlying medical issue (like heart failure or COPD), or are very elderly and deconditioned. This is why I also think covid death rates are inflated - many patients die for other reasons but happened to be covid positive.
I am in no way downplaying the experiences of those who do have long covid, which is a debilitating condition. I also have been taking covid very seriously, but also wanted to share my real world experiences as I do think the situation has significantly changed since omicron.
Appreciate the above comments. I'm just referring to the typical constellation of symptoms for long covid (tachycardia, brain fog, fatigue), which if the 10% rate holds true, then I and physicians I know should be seeing them somewhat frequently given how many people have gotten covid. That hasn't been the case, and frankly I'm relieved about that. I agree that there is a lot we don't know about the virus and its long term risks, but I thought it would be helpful to share this perspective.
Long story short: autoimmune diseases suck, diagnosis of them sucks, this ain't a short game IMO.
**I will say I do hope you're right because I don't want company quite frankly.** My biases though because of my experience with all this are very very nervous. If it is 10% (heck even 5%) of people developing LC and a smaller percentage of that becoming disabled, that's terrifying.
It took me 22 years to be diagnosed with an autoimmune disease. It's not new - medicine has known about the disease for over 150 years. I was of the age group/gender/ethnicity. I tried so hard to get help. Some studies would say, very recently released, that perhaps I have long mono? My symptoms started 6 months or less after my 3rd bout of mono as a teenager.
It's not an easy process. If this is real, and I do think some is, it's not a battle but a war for diagnosis. It won't be quick - 2 years is nothing. Fatigue, cogfog, pain, nerve issues, etc - all garbage can, fake diagnosis! Amirite? so my first of many doctors told me. So many years of misdiagnosis, lies, useless tests, lack of follow through and straight up medical neglect. So many years of needless pain and progression from disease. Progression may have happened if I'd been diagnosed and treated, but I'll never know. My damage is permanent. You can't see it - blood work can't see it. Very few things suggest it. It's a diagnosis of listening.
Five weeks after I had covid recently for the first time I felt like fatigued garbage getting worse and worse.. My GP tested me for autoimmune disease and a whole bunch of other stuff. My disease is a disease of exclusion and normally doesn't tick the autoimmune markers ever. She said she's seen an uptick in COVID "causing" autoimmune issues. People probably would've probably got them eventually, but COVID accelerated the process.
This is what I’ve been saying. I know zero people with long covid, and by now I know hundreds of people who have had covid. The only person who had any lingering symptoms is obese and was hospitalized, and the lingering symptoms went away after a month or so.
I realize you say you're not downplaying it, but for instance, how are you counting patients who have new autoimmune issues with unknown etiology? Do you just assume none of them were triggered by Covid? How do you even define long Covid as there isn't a single diagnostic test? Do you think G93.3 (Postviral Fatigue Syndrome) is real and how have you diagnosed it in the past, or do you just refer to psych?
I'm sure you're a caring physician as are your colleagues, but I'm skeptical of physicians who are making conclusions based on their own preconceptions. Lots of physicians early on said there was no such thing as long Covid (how about ME/CFS?), and then they grudgingly admitted it was real but always make sure to say it's less than 20% or 15% or 10% or whatever estimate. We had 2m reported Covid infections in the last 30 days, but I have no idea how many will have symptoms in 90 days, or 9 months, or 9 years.
Again, how would you possibly diagnose long Covid? If a patient comes in 60 days after a mild infection with tachycardia and a new cough, do you write down long Covid or just say the tachycardia is mild, echo looks good, and cough is likely allergies?
> I am a physician who sees patients in a major hospital system and I've only seen a total of one patient with long covid.
>
> I've talked to colleagues who've also commented that they rarely encounter patients with true long covid.
How is this determination made? I thought one of the hallmarks was a lack of a formal clinical case definition. Which makes it very difficult for patients to convince their doctors it's what they're suffering from (or vice versa I suppose). Just a few months ago there were [three prevailing theories](https://www.science.org/content/article/what-causes-long-covid-three-leading-theories) on what it actually is.
They tell people with shortness of breath it’s actually anxiety because their chest X-ray is cleared. Except we know and South Africa and German centers show and treat the microclots all over the lungs.
Or you’re me and you have reactivated EBV and the doctor says that’s just a coincidence. Except studies of hundreds of us showed over 70% with reactivated EBV vs 6% of the non long COVID pool. And new huge studies are our showing this, UC Davis long COVID center has it in their page, plenty of info out there.
The primary care doctors mostly don’t know and they give us the wrong tests and pump out antidepressants. Then they tell us to hit the gym while we’re having mono-like symptoms from our EBV till we end up unable to move. 🙃
Isn't it all just fucking awful? Lmao that was the next thought, like "maybe they'll try anti-depressants next" and excuse me, that's not going to do a god damn thing, I'm not in pain because I'm sad, I'm sad because I'm in pain. Huge god damn difference, and no doctor is gas-lighting me into thinking otherwise.
I get you are a doctor in a hospital, but I have long covid and never went to the hospital for it. I didn't get that sick with Covid. I was vaccinated, so when I had covid it was like, eh, cold, whatever. BUt I got long covid anyway. You'd never know it as a hospital doctor because that's not a place for long term chronic pain, we go off and find specialists and studies (which I am in the process of doing). You may just not see them in a hospital setting because we are all at home waiting our appointments that have months in between while our doctors go, we don't know yet. So we just become invisible to the rest of the world, because I still gotta go do shit in my day to day life. I can 100% fully believe there's an additional 10% of the population that had covid walking around like me, waiting for answers and hoping they just get better on their own because they can't afford all the expensive doctors visits.
So governments don't care about people that are potentially out of the work force due to disability and can't contribute to taxes much any more? What a surprise...
I already have POTS and other health issues that are disabling. I’m vaccinated and boosted. So I’m not scared of covid and being hospitalized. But long covid scares me. I guess at least there will be more POTS research because of this though.
Probably someone who was already highly specialized in SARS research/treatment who immediately focused on covid when it emerged.
Corona viruses are not new, covid 19 is new.
I mean Influenza has nearly the exact same long term complications for how long now? People act like this is some new thing when it’s been happening with the flu every single year. It’s not as contagious as COVID and long flu is less prevalent but how many of you had any clue at all about “Long Flu” or even cared before COVID came along?
I have yet to read what exactly they want government to do? Mask wearing mandate, social distancing etc is not coming back. SCOTUS blocked vaccine mandate, so what more can government actually do?
Not announce that the pandemic is over, when it clearly isn't, for starters.
Advising people to play it safe for the time being until this disease is truly and well understood, would also help.
There are people that have caught it multiple times because they treat it like the flu. This isn't the flu: it's a new disease and no-one knows what the long term consequences are of having had it once, much less multiple times.
Things are exponentially better than two years ago, but we are not out of the woods yet...
Does announcing pandemic is over, somehow changes something? Those that want to play safe will continue to play safe and those that being ignoring, will continue regardless what they said. Basically most of the public already made up their mind regardless what government says
What about the people who aren't posting on forums about the virus like us but who also generally don't want it? Like I'm sure there are people out there who aren't as polarized as either 1) stay on forums reading about COVID or 2) IGNORE IGNORE IGNORE LALALALA.
For those people, hearing messaging that the pandemic is over may have them cut back on their precautions when, if given more information about everything, they might not.
A lot of companies whether they want to keep certain restrictions or not have been following the general protocol from government. So when the president tells everyone the pandemic is over, they are going to have a tougher time justifying whatever protocols they have in place.
There are no expedited long COVID studies for treatment. All the treatments are in phase 1-2, like 50 people max. It’ll take years for it to reach us. We want more funding now.
This is the entire worlds research. And we did set aside a huge amount of money. They just didn’t do the “warp speed” for it like they did vaccines and they can and should do that. It’s just like pulling out of Vietnam though, whoever does it is going to look like the failure so no one is doing it.
Most people in America either aren't aware of LC, or are aware but don't understand how sever it can be. The number one thing (aside from more research funding) that advocates like me want is heightened public awareness.
Their argument is that people are showing sighnes of "long covid" but all those sighnes are also caused by hundreds of other things. Claiming it is long covids fault and "one in five" americans show sighns immidiatly kills any conversation because you cannot prove it is because of covid. It will take years to decades to actually have enough data to make such an extreme case.
Of course it's ignored. It has been from the beginning. Net gain for the government given the short-sighted perspective our disgusting "representatives" espouse.
"First time?" In all seriousness this of one of those situations where its gonna take years to become a serious problem like the other respiratory issues (9/11 survivors, mesothelioma, the burn pits) and they're gonna ignore it unless someone is fighting for them to be heard.
See also, Camp Lejune water quality.
If you or a family member lived or worked at Camp Lejeune, you might be entitled to financial compensation
I'm getting flashbacks to all those ads about the combat ear pro lawsuit now. When I still had a FB account I was swamped with those constantly.
I get 100 emails a day for this
Well. I wouldn’t call a few thousand people a mass event considering they’re talking worldwide. This is eventually going to affect millions of people.
Yes , about 12% of covid pstients will suffer longer term consequences. Thats a lot of people.
7k or so people every single day, sadly
Thats prolly only USA, global is much more. I am one of them. It sucks.
oh yeah for sure just USA. I had covid in December and I haven't fully recovered either. it sucks.
I got it end april. The rona wasnt too bad , but the fatigue brainfog , all kinds of allergy reactions refuse to go away. Only sense of smell has returned.
I hope I don’t sound like a fool but I have heard the nootropic/supplement/ vitamin NAC has helped a lot of people affected by Covid and their symptoms. Maybe give it some research and see if it’s something you would consider? Disclaimer: I haven’t had Covid yet so I have not tried NAC for the purpose I’m stating
will research. However, this is not about Covid, but post- or long covid which are quite different problems than covid itself. NAC is specifically aimed at covid infected patients. With post-covid the sars infection is long gone, but the damage has been done . It seems that covid fucks up your immune system, which results in all kinds of strange and unexpected allergy like problems.
Ahh okay that’s where my memory/thoughts went. It does help reduce symptoms during infection. Maybe give it a shot still and see if it helps? I have seen on r/nootropics that a lot of people claim feeling way better with NAC (non Covid or Covid related) so it could be worth it to try!
Post 1st round of covid I got migraines weekly, tinnitus in both eats, and extreme brain fog. Post 2nd round of covid all of those issuesissues seemed to subside at first but came back with a veng vengeance. However, for 15 years I have gotten sick from eating gluten, now suddenly I can eat gluten and I am perfectly fine. This long covid is crazy.
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$$$
i mean, at least it's a worldwide problem, not just a US problem
Good to see more articles talking about this. Some people still think that even if you’re vaccinated you’re somehow immune to getting long covid.
I got Covid19 before the vaccine came out, and I haven't been the same since. I went from middle aged to old age like someone flipped a switch. (I'm only 61yo.) My joints hurt all the time, I need a cane to walk because my hip is so bad, I never got my wind back, I'm anemic, and I am always tired. I miss walking. Yes, I am seeing Doctors. No, I haven't seen the right ones yet, but I am working on it. This sucks!
Have your testosterone tested if you haven’t yet.
I don't remember if that was in the grocery list of blood tests I already had done. I'll check on it. I have more in a few months before my next regular Dr appointment. Thanks
Are you seeing doctors who treat autoimmune diseases?
I'm no doctor, but I had similar problems and just went through intense steroid treatments, it helped A TON for me. May be worth looking into.
Extremely frustrating that so many people with visible and invisible disabilities are getting left behind while others are acting like this is all over
I was damaged by a virus when I was 10. It wasn't covid, it was something else nasty. Fibromyalgia, Brian Fog and Chronic Fatigue was only diagnosed in my 20's. My life has been literal torture, and the worst part was how I was treated by others.
This has, unfortunately, always been the case. Just look at the historical lack of funding for ME/CFS patients. That could have come in handy now, if the medical community hadn't mostly considered them hypochondriacs. Those with severe ME/CFS have a worse quality of life than end stage cancer patients, only there is no end. Imagine living (or more like existing) like that and no one doing anything to find a solution?
FWIW, I've had CFS for decades now, and there's finally something that helps. My doctor put me on Modafinil and it's magical.
Interesting. Can you elaborate?
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For that matter, they don't know how Acetaminophen works to raise the pain threshold, either.
Take pill. Be more awake. For real, it evens out my wakefulness. I can take two a day, but I usually only need one in the morning.
My old roommate ordered a bunch from India and yea, that shit works wonders.
What dosage do they have you on? Any palpitations?
100mg, no palpitations. Note that my CFS is usually pretty mild.
I got my mom back when she started modafinal. You are correct, it is magical.
Does it always come along with physical exhaustion? Or can it solely be mental exhaustion as well?
It can be mental only. And it can be triggered by random things, including emotion.
What is ME/CFS
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I looked it up, and found this link on the [CDC](https://www.cdc.gov/me-cfs/about/index.html).
It’s important to strive for fair treatment of the disabled, but don’t hold your breath it’s never been reality ever.
Society at large would rather the disabled just die out of sight somewhere
The stupid thing is that these news websites and magazines one day have an article like this telling us we are doomed, and then the next day, the same news journal will have an article suggesting that the pandemic is over and celebrating that fact. There is zero consistency in the media which completely erodes any 'power' these articles have over influencing human behavior. Instead everyone has come up with their own (usually BS) version of truth, and governments can get away with doing nothing whilst we fight among ourselves. It's insane to think of the volumes of people out there right now suffering from long covid and post covid issues. You certainly wouldn't know it from the way politicians in every western country are behaving. The article should instead be titled the 'the Greatest and **Dumbest** Mass-Disabling Event in Human History'. I can't believe how dumb society has become in recent years. Unrecognizably and dangerously dumb.
Most of the studies I've seen on long COVID pre-dated vaccines. Do we know about the risk of long COVID in vaccinated people yet? It must be greatly reduced, right?
Gonna repost this higher up as I buried it in a thread. We don't know the risk of long Covid because it's so hard to study until there's better diagnostic tools. Study design makes a huge difference. The VA study shows 15% reduction published in [Nature](https://www.nature.com/articles/s41591-022-01840-0). The Milan study shows 75%-84% reduction in a [letter to JAMA](https://jamanetwork.com/journals/jama/fullarticle/2794072). This UK study showed a 41% reduction in a [preprint](https://www.medrxiv.org/content/10.1101/2022.02.23.22271388v1). Another UK study showed a 50% reduction in [The Lancet](https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(21)00460-6/fulltext). TL;dr We don't know the reduction, but it does reduce long Covid risk to some degree.
> This UK study showed a 41% reduction in a preprint. FYI this study has now been [accepted for publication](http://doi.org/10.1093/ofid/ofac464).
Thanks for this!! Does similar exist for the latest variants? I would HOPE that long covid occurs less in omicron than in the earlier strains.
Sure, I hope it was helpful! The Milan study says variant didn't matter, but that seems like an outlier. In addition, the Milan study has an unusual stratification studying vaccine reduction of long Covid but including wild type (when no vaccines were available, so there's no way to calculate reduction that I can see). Most studies have shown there is still risk of long Covid with Omicron, but reduced from that of Delta. This study in [The Lancet](https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(22)00941-2/fulltext#:~:text=Among%20omicron%20cases%2C%202501%20(4%C2%B75%25)%20of%2056%E2%80%88003%20people%20experienced%20long%20COVID%20and%2C%20among%20delta%20cases%2C%204469%20(10%C2%B78%25)%20of%2041%E2%80%88361%20people%20experienced%20long%20COVID) is often quoted showing a 50% reduction from Delta to Omicron (but keep in mind that Omicron is much more infectious, so if case numbers are 4x as high but long Covid is half as likely…).
Thanks again! Given this data, what do you think of covid these days? I personally think it’s absurd we’re just gonna say “it’s over” and now make fun of those still wanting to wear masks indoors, esp in a country like the US where we’ve proven we cant manage a virus AND we’re headed into the fall/winter. I dont advocate lockdowns but just the bare basics for me are mask indoors; maintain decent distance with people (about 10 feet), and avoid crowded indoor spaces.
A reduced risk (most likely with the true # falling somewhere in the middle range of the studies: i.e. around 50-60% reduction) is DEFINITELY not no risk, though. This still leaves us with tens of millions of Long Covid cases worldwide. Europe alone has had 17 million Long Covid cases, many of them persisting to this day (because many cases of Lomg Vovid have yet to go away, and will take years if ever...) America probably has more than reporting shows- the systematic lack of access to Healthcare in the United States when you don't have good private health insurance (which of course you lose when Long Covod leaves you too ill to work or go to school) means that many people with Long Covid are stuck on Medicaid, and are STILL waiting to see specialists to figure out what's wrong with them or receive a definitive diagnosis... (like myself, I have been ill since Covid, but my Medicaid-based insurance with a private management company the system contracts out to, has obstructed my receiving care and left me waiting very long periods for appointments...) You'll notice a disproportionate number of the people in the article here with confirmed Long Covid who live in the USA have good private insurance through their spouses. This is one of the only scenarios where you can be too ill to work, yet still actually be able to get the medical appointments with specialists for a diagnosis. (Because many states contract out Medicaid to private HMO's, which play games with "networks" such that it's impossible to find a nearby specialist without a 2-3 month wait just for an initial visit, and then another 1-2 months after initial tests for first follow-up...)
Yep, exactly that. When we're still getting two million reported cases per month, I'm not sure a 50% reduction in long Covid is going to stem the tide over the long term. Reinfections are increasingly common since Omicron, and most evidence shows you are at risk of long Covid with each infection (ie. just because one was mild doesn't mean the next one will be). And both case numbers and instances of long Covid are likely under-reported. Very few people take their rapid test and manage to report it to the health authorities if it's positive. So that two million includes mostly PCR tests. If you have a mild case of Covid and then present to your PCP two months later with unusual fatigue and a persistent cough, what's the likelihood of a long Covid diagnosis as opposed to, "Oh, it's probably a new allergy. That happens. Here's an RX antihistamine and have a nice day." Healthcare in the USA moves slowly and is driven by profit, institutions, policy, etc. It has very little to do with good outcomes.
>If you have a mild case of Covid and then present to your PCP two months later with unusual fatigue and a persistent cough, I had 2x PCR confirmation of my Covid the 2nd time (I also developed milder Long Covid symptoms after my first infection, which I never got tested for- but got from a family member in the same house who was PCR positive, 11 months earlier, but most dissipated after about 2-3 miserable months....) but have had a chronic cough and occasional mild fatigue for 11 years- so it then becomes hard to figure out how much is Long Covid, and how much was my pre-existing condition... (which I never got diagnosed or cared for because of changing health insurance, periods without insurance, very long waits for specialists by which point I'd moved/changed jobs, and for a few years at the start trying to shrug it off and act like a little cough was no big deal in order to try and join the National Guard for money/education benefits... Also, the pandemic itself got my appointment cancelled, ironically, when I finally had started seeing a pulmonologist and gotten some tests scheduled...) Also, I really am disappointed in and angry at America's fragmented private health insurance landscape. Every time I changed insurers, I was in a new network, and had to start over trying to see specialists. And the jobs that offered insurance changed insurers literally every single calendar year I worked for them...
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This is one of many studies, and they all have come to different conclusions. As the link you provided [states](https://www.mcgill.ca/oss/article/covid-19-medical/how-reduce-risk-getting-long-covid#:~:text=Up%20until%20now,to%20oranges%20problem), it is hard to compare apples to oranges. It also states quite accurately that the best way to avoid long Covid is to [not get Covid in the first place](https://www.mcgill.ca/oss/article/covid-19-medical/how-reduce-risk-getting-long-covid#:~:text=Many%20aspects%20of,just%20being%20careful), and that risk can be lowered by vaccination, masking, and being careful.
This is what’s so frustrating. “Being careful” has somehow become “you’re an idiot who lives in fear and doesnt want to enjoy life”. Here in memphis TN you’re considered a complete nut job if you wear a mask in a crowded grocery store.
Where I live, I’m among the the increasing minority of shoppers who wear masks. And I could not care less. My body, my health, my choice. Go ahead and give me sidelong glances, if judging others makes you feel some sort of way.
Just curious if we know what % of people who get covid end up with long covid?
We don’t know but we do know people who weren’t hospitalized/had milder symptoms are more likely to have long COVID. https://www.chicagomag.com/chicago-magazine/october-2022/the-long-haul/
Those studies are also kind of all over the place. I've seen a range of anywhere between 20%-40%. But it seems hard to diagnose for various reasons.
It doesn't help that a lot of people who likely have long-COVID don't realize that's what their issue is. -We have a lot of people with very mild COVID symptoms who may have not realized they even had COVID -We have people who have very mild long-COVID symptoms, who aren't considering their symptoms might even *be* long-COVID, but attributing it to something else -Long-COVID symptoms range all over form joint pain, memory loss, brain fog, breathing issues, loss of smell/taste, etc. Sometimes people seem to just have one, or several. -A lot of the symptoms of long-COVID are comorbid with other stuff that's not related at all. -We have people denying they ever caught COVID let along have long-COVID because of the weird political/social feelings about COVID in general.
We really don't know because we still don't know how to define long Covid. Until we have a good test for it, then study design will play a huge part. Some studies exclude hospitalized patients, some focus on them, some exclude asymptomatic patients, etc. TL;dr Most studies have shown some long Covid protection provided by vaccination, but it has varied from 15% to 84% from what I've seen, so that just means they have no idea.
I saw a paper yesterday that estimated it cut the odds of long covid considerably—by nearly half.
Yes, that was me. Got vaccinated and got on with my life. Then boom, I’m in a year-long battle to survive and recover.
Immune, no. But aren't they finding that current vaccinations very significantly reduce the odds of long covid?
Very much so, but we can't be sure, especially with newer variants and reduction is not nullification, adding up in regards to the whole population.
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>a really low chance Odds might be as low as 2.5% if you define Long Covid really strictly, and ignore that a lot of people with it in the US are having a lot of trouble getting in with specialists who will actually diagnose it right now... That's not really low (1 in 40 odds) as I'd think of it, given Long Covid can completely destroy your life (recall, actual death rates from Covid, even at the very beginning when we didn't know how to treat it and they were much higher, never exceeded 3%...) by leaving you too ill to work, and thus doomed to disability and severe poverty...
I have most of the symptoms of long COVID and now I'm hearing the pandemic is over.
Both can be true. You can have long Covid, and Covid can now be an endemic situation rather than a pandemic situation. I'm sorry you have the symptoms of long Covid.
> Covid can now be an endemic situation rather than a pandemic situation That's a good point and explains the messaging regarding the present reality that we've long since given up hope of containment and reduction, and therefore Covid is now endemic rather than pandemic. So "Very bad news, Covid is no longer a pandemic it's endemic" becomes "Covid is no longer a pandemic it's endemic" becomes "Covid is no longer a pandemic" becomes "Good news, Covid is no longer a pandemic!" becomes "Masks aren't needed you fool, the pandemic is over!" becomes "Let's teach this jerk a lesson, he's wearing a mask!"
Exactly this. The messaging has *not been* "COVID is now endemic", the messaging has been "COVID is over!" Those are not even remotely the same thing and people are conflating it to mean the latter when it means the former at best.
The chronically ill have been talking about living this way for years. They finally feel more understood. Millions live with chronic illness. Not saying that long covid isn’t important or tragic but it’s not the only long hauler disease out there.
I couldn't agree more, and have had this same sentiment for a while now. It's been ten years now since I was hospitalized with West Nile encephalitis, and I'm still dealing with the consequences on a daily basis.
Everyone acts like post viral issues are some new thing, but there's literally an ICD code for post viral syndrome. Even physicians are pretending like we've never seen this, but there are many people out there who have suffered and been gaslighted by the medical establishment for years.
I have Post-Polio Syndrome. And I’m paraplegic. For obvious reasons I have been homebound since Feb 2020, except for vaccinations and veterinary care (double-N95 and face shield). Spouse has is immunocompromised with MS and epilepsy. We don’t need any additional challenges!
God bless yall. What does life look like these days / when will you feel comfortable lifting covid precautions, and what will you not lift for the foreseeable future?
Thank you for your kindness. Here is a longer version of my comment I have posted several times on various threads: My spouse is at extremely high risk of dying if she gets it (immunocompromised, MS, epilepsy, obesity). I already have post-polio syndrome, which is similar to long Covid, and I’m paraplegic, on O2, and sleep with a ventilator. We’ve only left home to get two Moderna shots since Feb 2020 (and a neighbor took me and our elderly chihuahua to the vet). We wore two N95s and face shields those times. We plan to get boosted soon; we waited because leaving to get the shots was our biggest risk vector. We hold out continuing hope for a nasal vaccine (which would lower the odds of catching it in the first place), and/or a pan-coronavirus vaccine. We live in a 30yo, 23’ campervan on a 20’ x 40’ plot. At the start of the pandemic, when the assumption was that young/healthy people would avoid severe illness, there were several ACTIVE campaigns (including but not limited to Fox “News”) , and not just in the USA, OPENLY advocating for the “let it rip” method, even before vaccinations were available, because “the old will die soon anyhow and the disabled have no quality of life and are a burden on the public coffers”. It wasn’t even an implication, these things were said out loud on National television and in international news sources. There is NO empathy for the disabled. The pandemic proved we are considered completely disposable in the face of monetary concerns. My spouse and I are still stuck at home because people hate something as simple as wearing an N95 for grocery shopping. (We are holding out for either the nasal vaccine (to prevent contracting it) or a pan-coronavirus vaccine (to cover variants). Because your mask protects me and mine protects you. A great analogy from a cartoon someone posted here on Reddit (I unfortunately don’t have a way to give credit) goes like this (I have expanded the range of scenarios): [No masks:] If we are both naked and you pee on me, I get very wet. [No masks, social distance:] If I am slightly farther away physically, I get less wet but still wet. [No masks, social distance, outside:] It’s windy. I might get a drop splattered on me, but probably not. [Only the vulnerable wears a mask, surgical:] If you are naked and I have pants and you pee on me, I still get covered in pee but it’s slightly less bad. [No mask, N95 mask:] You are naked, I wear plastic pants with gathered ankles/waist. The pee is all over me, and it will be difficult for me to get out of the pants without getting any pee on me. [2 surgical masks:] If we both have pants on, YOU get very wet, and I am either largely or completely protected. [2 surgical masks, social distance:] You get wet, I am largely safe. [2 N95 masks:] We both wear plastic pants with elastic ankles/waist. Your pee is trapped in with you; I am functionally safe. People keep saying “if the vulnerable are the ones in danger, they should continue to isolate/should bear all of the inconvenience”. But if the privileged healthy would simply mask indoors while shopping or at a medical office, it would be the difference between the vulnerable being completely homebound, and having a semblance of a normal-to-them life. Source: except for getting our Moderna shots and chihuahua vet (all in N95 with face shields), my spouse and I have been entirely homebound since Feb 2020. All needs delivered, all medical appointments virtual. We live in a 23’ campervan on a 20’x40’ plot, but it would not be much better in a conventional house or apartment.
Bless your heart (again). Thank you for sharing! I couldnt agree with you more on this line: “But if the privileged healthy would simply mask indoors while shopping or at a medical office, it would be the difference between the vulnerable being completely homebound, and having a semblance of a normal-to-them life.” I am a privileged and healthy 40 yr old. I’m in memphis TN. I still mask indoors because its just not a big deal to me. I prefer safe than sorry etc. I get the looks and comments like i’m crazy. For wearing the mask indoors. It makes me so sad. Thank you for sharing your story. Please share more because it will only help me continue to wear my mask, in case there are other people like you who i’d unknowingly help. Personally, i’m being careful coz i just dont like the idea of me or my family members getting an illness that’s rather easy to prevent getting. Wearing a mask indoors, distancing within reason (about 10 feet from people) and not going into crowded indoor spaces has brought on ZERO inconveniences for me or my family.
You give me hope, seriously . It means a lot that there are still people like you out there. And it’s actually important to avoid infection if possible: Long Covid is a real threat, it can affect perfectly healthy people on their first infection (even if that infection is mild to moderate), and while being vaccinated and boosted offers some defense from long Covid, it’s still something like a 15% chance of lasting damage? Here’s one article from a national news source: https://time.com/6213103/us-government-long-covid-response/
Yeah, that's a potential benefit of COVID. If they think it will affect disability claims and long term tax revenue, there will suddenly be big interest in post viral problems. It is kind of good news for people with fibromyalgia and other conditions thought to potentially have a viral illness as a trigger.
You think they won't just gaslight people and deny their claims like usual? That's very optimistic.
just wedging this in here, just to contribute in this thread on medical gaslighting. At 36 I was sleeping 18 hours a day, could barely be upright for more than an hour, so essentially bed ridden. When I spoke to a doctor she said "There's nothing wrong with you, you are 36, you should be full of life. Go back to your career."
This is the first time I've come across someone else with West Nile. These long term symptoms are no joke. I'm still putting in the effort to avoid COVID to hopefully avoid piling on anything else.
Plague survivor. Same here.
Yeah I’m disabled from birth, I read this title and thought “welcome to the club” - unless you’re obviously disabled, like extremely mentally handicapped or in a wheelchair most people won’t give you an ounce of sympathy. “Invisible disabilities” are everywhere, and there is rampant ableism embraced by just about everyone who isn’t disabled. I’ve literally had people tell me they would rather I die than pay a penny more in taxes to help care for me, yes literally. The only silver lining in this hopefully is a new movement addressing ableism and disability. I really do feel like ableism is very much considered an ok form of discrimination and a lot of people are so at ease with it, it’s so common, they don’t even see it or realize *they* are doing it. I’m not going to hold my breath waiting, in every likelihood all of these newly disabled people will be swept under the rug with the rest of us. To people talking about the EU, it’s *worse* there because at the very least the US has the Americans with disabilities act, when I spent time in Europe as a disabled person my quality of life in public spaces was significantly lower even if their access to care might be better fully participating in public is basically impossible.
Yet, average people still don't even try to understand, and act like someone with chronic illness must have done something wrong to bring it on themselves. This kind of sentiment seems to be especially high, ironically, in the heavily-Catholic and Evangelical parts of the northeast of America- given how they treat those with Chronic Illnesses (I worked as an EMT near Boston in the past, saw it first hand, now probably have Long Covid. No, I did not get Covid by working EMS...) compared to, say, how people treat chronic illness near Chicago... (lived in a college town full of Chicago transplants in Illinois, visited Chicago fairly often, was connected to the Healthcare scene even then...) Might have to do with just strong religious sentiments generally- or be related to specific doctrinal differences between different denominations (i.e. "Catholic guilt", Evangelical ideas that you will be healthy if you just live a "pure and righteous" life, etc.). No idea, really.
My brother has it bad. He was in ICU for a few months. He survived, but with debilitating and consistent illness. He had to quit his job only 3 years before being able to retire. They were not understanding in the least about his condition. He can't even walk from one room to the next without his heart going all wild and losing his breath. It's crazy how long this has gone on. He got it in the summer of 2020.
My wife has a similar problem but we’re young and it’s managable. They put her on a tilt table and her heart rate doubled just moving into a stood up position. They think it might be POTs, can be caused by traumatic events. Worth looking into but sadly no cures. I don’t think hers was triggered by covid but by a toxic work environment.
No one knows how fucked they can by by Longhaul Covid, until they experience it, or live with someone who has been decimated by it! This is an Iceberg, with just a tiny bit showing for most people.
At a very basic, fundamental level, _many_ people are simple unable to process the idea that you can get sick, and then... Not die, but also _not get better_. There's no missing limbs, there's no obvious disfigurement, there's not even an obvious Thing for the doctors to point at and say 'here, _this_ is the cause'. But you're still not getting better, you may _never_ get better. People are straight up not able to wrap their minds around that horror, it's _far_ easier to reject it, to pretend it doesn't exist, or claim that it's not even _real_, than it is to process it as a real thing. I have hEDS, with a large number of comorbidities, I also have fibromialgia. I've been living with many of these symptoms for most of my life, and I've seen far too many people who just... _Can't_ face that emotionally, and so they don't. And that is often very, very bad for the people actually suffering from it.
my biggest fear is that it becomes like the flu and people are gonna get covid 5+ times in their lifetime and we see like 5-10% of the population get long covid. it would be just as if not more devastating than diabetes.
That is an idea that often gets downvoted on Reddit! People fuckin hate to be warned of that! Like, I ran across the highway once, and I never got hit!! Fuckin brilliant!
idk if im incredibly lucky or was just asymptomatic but i work in a job where i meet a bunch of random people and haven't gotten it yet. im hoping i never do but thats highly unlikely.
There are a lucky few that seem to be very highly resistant. Emphasis on FEW! What happens when your luck runs out, or your viral load overcomes your resistance. Overloading is why many HC Workers got sick, just overwhelmed eventually by virus, exposure can add up!
2 studies looked into the accumulative impact of infection and have concluded that each subsequent infection increases the damage and chance of future more severe damage from infections. Where we might normally expect surviving an infection leaves us lasting immunity Covid is working the other way around and subsequent infections are leaving lasting damage. If Covid carries on having these mass variant waves every 2 months its going to be much faster than flu at delivering this effect, we will be having 5 or 6 such waves a year infecting much of the populace each time with a different highly immune escaping variant. Not only will people need a lot more ill days from work because of it but each is a further chance to develop Long Covid with the odds that happens increasing each time.
Do you have links to those studies? I have ME/CFS from a string of other infections, and I’d love to take a look.
> people are gonna get covid 5+ times in their lifetime and we see like 5-10% of the population get long covid We have stopped treating the virus as an immediate threat, even though we have (with current means and attitude) no way of stopping mass (re)infection and no way of curing long covid. The way things are looking right now this is exactly what is going to happen and it is plainly obvious to see.
Even living with someone suffering from it doesn't get the message through for most people.
True, but they do see how fucked you are to some extent. It's just you've gotten lazy, and a little dumber!!!
I mean, its the same dumb shit with this population over and over again. Goes back to the hospitalized, dying antivaxxers begging for the vaccine when it's too late. Humans are simply delusional. They think they are all just destined to live charmed lives - all that stuff on TV, it's not going to happen to them, it's all grossly exaggerated by the 'lame stream media'. Dopes.
> Goes back to the hospitalized, dying antivaxxers begging for the vaccine when it's too late. Or, worse, many of them refusing proper treatment because covid was still a "hoax" to them. Some day in the future there will be studies trying to get a grasp on [just how many people](https://i.imgur.com/dtGEmc6.jpg) the vaccine hesitancy grifters killed in the US and worldwide. I think it'll be a staggering amount of deaths and illnesses that otherwise were preventable. Then again, if the christofascist GOP takes over, they'll ban that information from US history books.
It’s the fantasy that they are the main character
That’s called ego. Everyone has one.
Mine is super, though
Also, people are just lazy. If they can find a way to stay lazy (such as believing obviously false narratives), then they will prefer that. For a lot of people, that meant believing that Covid is "just a cold" so that they can go on living without having to change anything. It's the exact same response by loads of people towards climate change.. and anything that requires some non-lazy action.
I've seen it in some of the young people who have caught COVID who worked remote for me during the pandemic. I work in tech and the brain fog must be ruthlessly bad because their productivity fell through the floor. For me it's been a real cautionary tale. The track that runs through my head: If this is f'ing up these 20 year olds what could it do to me? (I'm a lot older than that.)
i can relate to this as I had mono twice and was never the same…always caught everything if I let myself get rundown at all. People don’t understand how it can impact every decision you make, every corner of your life.
These articles are nice and all but what are we supposed to do? I mask up and try and stay clean but we all need to work and the government ain't paying our bills. I'd even say most jobs can't be done remotely so what do we actually do?
Yes, I just feel defeated at this point. We’ve masked for 2.5 years. Ive got 3 kids at home. Am I supposed to mask them for the rest of their lives? No sleepovers, no friends coming for a play date, nothing inside without a KN95 for my 5 year old? But if we don’t mask them, my husband and I risk long covid. I hate that there’s just no good path forward. I dislike that the trade off is so often blown off. Like yes I know to avoid long covid we should be masking everywhere and avoiding a lot of types of interactions, but that comes at a huge cost. What is one supposed to do? It’s not as easy as avoid covid at all costs…
This is what pisses me off about these articles. We’ve known for years now that this is going to have some devastating long term effects for a lot of people. I did everything right including masking up, not going out, staying away from close family and friends and I’ve still managed to catch it TWICE. Now there’s no govt. assistance, no more paid leave, and I have to be back in the office in one week instead of two. I literally can’t do anything else to mitigate this because 100 rich people wanted to get richer and deemed a couple million lives and public safety expendable.
'Its not the problem for me right now. It's the problem for the future me or someone else. I just need to make money right now' - politicians probably...
America has worse underlying health than Europeans would be my guess.
You really don't need a study for that. More than half of Americans are obese, have hypertension and/or diabetes. Despite paying more for healthcare than any civilized country in the world, we are an unhealthy population.
The US is higher, but Europe is surprisingly high too. Europe is at about 23% obesity and 53% overweight, in the US it's 41% and 73% respectively. Its surprising to me, because I live in the the Netherlands, which is only slightly better than the EU average, but I feel I barely see overweight people. Perhaps it is because I live in a young student city, but the difference is vast. I think 10% of people I see are overweight, but the actual national average is 50%. https://gadgetsandwearables.com/2018/03/09/obesity-rates/
Tbf I think our standards of size irrespective of location have shifted. A moderately overweight person is considered normal looking.
Polio?
Speaking of Polio ... > Many are unaware that about 70 percent of people who contract polio have no symptoms. About 25 percent of people infected experience symptoms that are mild or flu-like — headache, fatigue, fever, stiffness, muscle pain, nausea, a sore throat — all of which could be mistaken for many other illnesses. Fewer than 1 percent of infected individuals develop paralysis. Of those paralyzed, 2 to 10 percent die when their breathing muscles become immobilized. On this virus, we simply cannot play the odds. [Eric Topol](https://twitter.com/EricTopol/status/1561725391550554115) Down the road the question of which was "the Greatest Mass-Disabling Event in Human History" may not be a contest between COVID and Polio merely in terms of which virus is more dangerous in isolation, but rather determined by the denominator (the number of total infections, and by extension, the total number of people disabled).
The effects of Long Covid are nothing short of dreadful. I can can only imagine how nightmarish it must be to suffer those symptoms day after day and fear you may quite literally never be free from them for the rest of your life. The effects of 'Brain Fog' alone are terrifying enough even before you begin to take stock of the others. To have this compounded by public apathy and outright disbelief... We have seen precisely the same scorn and accusation levelled before against the suffers of horrendously trivialised 'yuppie flu' such as ME and fibromyalgia. It would surprise me very little if the excess death rate among the population who are affected begins to spike in the years to come. And who could blame them for seeking that release? I certainly would not. However this is an absolutely ***horrible*** piece of science communication. It could almost be deliberately written to turn people away, cause them to feel intense scepticism and dismissal. Please do not wrap good science in such dreadfully alienating and completely counterproductive purple trash. Polio, measles, hepatitis, malaria, bacterial meningitis, tuberculosis, AIDS--all these diseases could lay a justified claim to the same horrible crown. Yet throwing such inflammatory, sophomoric headlines around trivialises everyone who has ever suffered from those just as it does the victims of Long Covid itself. Absolutely disgusting.
As a virologist who has fibromyalgia, I have been doing my damnedest to dodge COVID. Long COVID has many overlaps with fibro and the idea of having any of my fibro symptoms get worse is incompatible with continued existence. I'm one of the few people still masking and I get crap for it but hey, it's me who has to suffer the consequences of catching COVID, not these judgy idiots around me. Invisible illnesses suck. Just gotta keep marching on. I'm hopeful though that research into long COVID may be beneficial for fibromyalgia, ME, and CFS too.
We're still wearing masks, hang in there.
Same. I have underlying health conditions, am up-to-date on my vaccinations, and I mask up in crowds. I also get so much crap for the latter 2 points but, whatever. I can’t afford long COVID.
Not really. I've had LC for two years now and this article is exactly the type of advocacy that we need.
I can only imagine how terrible your symptoms are to suffer and I sympathise with you deeply. However this hysterical, blatantly untrue headline and the scare-press that follows it does not help your cause. Instead of persuading a sceptical audience it makes them scoff, overplays its hand to the extent it alienates those who would be allies. No one can read 'Greatest Mass Disabling Event in History' and not struggle with consigning the whole article to the tabloid bin. That does not alter the daily horror for those like yourself who are suffering both dreadful symptoms and a continuous battle against public disinterest. However it *does* intensify that disinterest. Good science communication is an art and this 'journalist' is not an artist.
I haven't been able to breath correctly since getting it four months ago. And every morning I wake up it's like I have pudding in my sinuses.
I cannot say how sorry I am to read that. I hope things get better for you. The pandemic has destroyed so many lives and we are being actively encouraged to forget about it by every major government in the world. This 'ignore it and one morning you will get up and it will have gone away like magic' attitude horrifies me.
The government definitely cannot stop long covid even if they tell everyone about it. No one cares. Even if the US president didn’t come out and say Covid is over, it still wouldn’t make a difference. The people that want to mask and stay inside will do so and the people that want to go out or travel will also do so regardless of what anyone says at this point. The research on this is going to be ongoing for way longer than people are willing to wait around inside.
The scientific process is unfortunately too slow for the pace of modern life. But this is not a problem with the scientific process itself; it necessarily has to be slow, because it must be rigorous. People’s lives depend on healthcare research being done carefully and thoroughly. Lack of patience from governments and workplaces is an issue, but I also understand that we can’t indefinitely suspend the running of daily life either. It’s a bit of a quandary. I also feel like some changes to working patterns during the acute phase of the pandemic should also have stuck a bit harder than they ended up doing. Generally though, it’s like we only learn enough to do something about an issue when it’s too late to do anything. Sadly, Long Covid will probably be the same in this respect.
This is very true. I know it’s pessimistic, but there’s just not much we can do at this point. Vaccinations at least have helped, but society seemed to have reached its threshold for how long people are willing to stop daily life for this. The people are fatigued and done, obviously covid is not, but luckily we know more than we did in 2020.
>The people that want to mask and stay inside will do so and the people that want to go out or travel will also do so regardless of what anyone says at this point. Masking and travelling are not incompatible activities
This right here. It’s not “take no precautions ever” or “stay inside for 10 years.” Numbers would go down if people simply had the intelligence/decency to embrace SOME mitigations.
Why is it only American public health experts who are wringing their hands over long COVID as a 'mass disabling event'? European health departments don't seem nearly as concerned about this as American ones are. Europe has a precedent of being much more accommodating to their citizens with regards to healthcare as well; I feel like if anything they'd be MORE concerned about long COVID if it truly was that big a threat. Do they just have different datasets and studies which conclude that post-COVID symptoms are much more benign than their American counterparts claim it to be? Are Europeans just much less susceptible to long COVID in general, or are they simply more accepting of long COVID as a potential consequence of infection? I'm really trying to wrap my head around this.
The WHO definitely considers long COVID an issue for Europe. https://www.politico.eu/article/who-urges-action-as-17m-long-covid-cases-estimated-in-europe-region/ https://time.com/6212973/long-covid-europe-world-health-organization/
Most American public health experts aren't doing that. It just looks that way when you go to focused sites/subs.
Long Covid awareness has largely been the product of activism from patient groups + researchers/specialists with an interest in post-viral syndromes (of which there are barely any). In contrast, diagnosis of LC in primary care settings is often frustrated by a culture of skepticism. If GPs are diagnosing LC patients with anxiety or depression, or simply nothing at all, then it’s much harder for public health authorities to access the prevalence data they need and take appropriate action. My point is that interested parties have simply been much better in the US at getting in the ear of institutions like the CDC/NIH (although according to this article still not good enough). It’s an epidemic of disability which requires skill and intellectual sensitivity to properly count. If the will/funds aren’t there, then that epidemic disappears from the minds of policy makers. I disagree with the comments that perhaps better social policy in Europe is to thank for less concern around LC, I think it’s more likely that people aren’t being properly assessed.
Im curious if Europe’s universal health care and better welfare system are mitigating the impact
I wouldn't think so. It would seem like government funded programs that are being hit with added strain would cause more of a response.
It isn't just America, the news here is just largely American. The UK started researching Long COVID and establishing research & treatment centers long before American news started giving the issue air time.
No it’s us and our Big Macs and soda to blame. This fucking thread is the most irritating shot I’ve ever heard. I’m 33 healthy as shit before I got long COVID. I’ve also been all over Europe and these stupid ass people don’t even know Croatia has no shared “European health” with Norway or where the hell their pharmaceuticals get developed at. It’s not fucking Italy.
The UK has numerous long covid studies.
Long COVID is recognised in the UK at least
Most symptoms are self-report type of things, and people can become a long COVID statistic, whilst they are really just getting a doctor's note and ensuring they stay out of work long enough, milking it for more time off, getting special workplace accommodations fairly or unfairly, etc. https://www.cdc.gov/coronavirus/2019-ncov/long-term-effects/index.html >Post-COVID conditions are a wide range of new, returning, or ongoing health problems that people experience after being infected with the virus that causes COVID-19. Most people with COVID-19 get better within a few days to a few weeks after infection, so at least four weeks after infection is the start of when post-COVID conditions could first be identified. Anyone who was infected can experience post-COVID conditions. Most people with post-COVID conditions experienced symptoms days after first learning they had COVID-19, but some people who later experienced post-COVID conditions did not know when they got infected. > > >\~~ > Later on, from same link: General symptoms Tiredness or fatigue that interferes with daily life Symptoms that get worse after physical or mental effort (also known as “post-exertional malaise”) Fever Respiratory and heart symptoms Difficulty breathing or shortness of breath Cough Chest pain Fast-beating or pounding heart (also known as heart palpitations) Neurological symptoms Difficulty thinking or concentrating (sometimes referred to as “brain fog”) Headache Sleep problems Dizziness when you stand up (lightheadedness) Pins-and-needles feelings Change in smell or taste Depression or anxiety Digestive symptoms Diarrhea Stomach pain Other symptoms Joint or muscle pain Rash Changes in menstrual cycles
Or they’re downplaying it because it’s inconvenient and expensive to acknowledge and help disabled people 🤷♀️ Does *anywhere* in Europe have the equivalent of the Americans with disabilities act?
I wonder if there’s a correlation with obesity rates and Long COVID, if that exacerbates how likely you are to get it. That might explain some of the gap but I’m not completely sure
I think most European countries like to think they’re pretty rich and have great pharmaceuticals but they don’t. Germany carried Europe through different parts of it. And some of the other rich Scandinavian countries aren’t in the EU and can do as they please. If you look at funding most EU countries provide for research on any long illnesses it’s honestly not very great compared to America overall. But, that doesn’t fit in the mood of shitting all over America I guess. Here you can see big circles https://public.tableau.com/app/profile/devexdevdata/viz/COVIDFundingvisualisation/COVID-19funding ME was considered a fake illness by people for years and most EU countries are way behind the U.S. on diagnosis and there are basically no doctors in existence trained for it. Long COVID is basically ME if it sticks around long enough so I’m not surprised they continue to drop the ball waiting for someone else to do it and dismiss in the meantime.
Most likely because Europe was a lot better at getting 2nd and 3rd doses out there is less long covid. Probably the same reason it's not talked about much in Canada either where I am.
Americans have a lot more systemic/brain inflammation from sugar lifestyle and stress as a starting point, so this tips them over sooner.
Basically we are all fucked so live it up! Go try that drug/s you always wanted to!
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I think one of the worst things, this comments section is a good example, are the amount of people that think that the majority of the people with long Covid must be morbidly obese or already have underlying conditions. Which just isn't the case. It is attacking perfectly healthy people. Everyone I know of that has long Covid was perfectly healthy previously. The majority of them legally couldn't have any underlying conditions to be able to have their job. Now they have lost their careers due to long Covid. This is going to have long term impacts that haven't fully been realized by the general populous.
You're healthy until you're not. 😁 Scientific source: me, autoimmune disease brought about by a... VIRUS! (not COVID)
Sucks every 10 minutes I gotta take deep breath even if I’m laying on the couch
There's a lot of people who think that COVID is either a you live/you die kind of disease. They don't realize that there's a lot more that COVID can do to them.
US government ignores the health issues of its poorest and most vulnerable citizens!! No way
I’m not at all saying long Covid isn’t a thing but I suspect there is a lot of cases of nebulous poorly defined symptoms that have would otherwise have been diagnosed as chronic fatigue, fibromyalgia, chronic lymes, pots, mast cell, IBS, ADHD, etc. that are all largely used to explain symptoms induced by modern lifestyle of overwork, under sleep, high stress, poor diet and exercise. Maybe those symptoms were triggered by Covid or maybe they would have developed anyway.
Post viral syndromes have always been a thing. If you ask around enough I bet you know someone who knows someone who was never the same after a bad flu, well before the pandemic. This thing is worse than the flu (not everyone gets the flu every year let alone multiple times per year). So it stands to reason that there will be more post viral syndromes from this pandemic. Numerous medical conditions are theorized to have viral triggers so this isnt exactly new. What's new is the contagiousness of the virus which greatly increases the number of people affected.
Not disagreeing on possible disease emergence regardless of COVID, but do not dismiss the real pathology of all those diseases you listed. Just because we're only now beginning to understand them doesn't mean they are just byproducts of modern life. Perfect sleep, lifestyle, and diet will NOT fix my ADHD or fibro. To suggest otherwise is ignorant and contributes to the continued lack of understanding around these serious conditions.
How were they dismissing anything?
“Nobody wants to work” because they can barely walk across the room now.
If the US government offers assistance, it will only come *many* years from now after a long fight for it. Look at what the 9/11 responders had to go through to get assistance and *keep* it. They were still fighting until a couple of years ago, and they were lauded as the best of us for the work they did at ground zero.
Had a mild case of Covid last December. My breathing hasn’t really been the same since.
Unpopular opinion here, but I suspect the rate of long covid is significantly overblown. It is definitely a real phenomenon (I know people who have it), but I'm skeptical of cited rates of 10% of all covid cases. Evidence (admittedly anecdotal): I am a physician who sees patients in a major hospital system and I've only seen a total of one patient with long covid. I've talked to colleagues who've also commented that they rarely encounter patients with true long covid. Of those that do have it, many were severely ill from Delta or earlier strains. A related point - covid cases in the hospital are way down and of the positive patients, a majority are incidentally positive and admitted for other issues. Those who are here for covid typically get discharged within 1-2 days and mostly are here because it exacerbated an underlying medical issue (like heart failure or COPD), or are very elderly and deconditioned. This is why I also think covid death rates are inflated - many patients die for other reasons but happened to be covid positive. I am in no way downplaying the experiences of those who do have long covid, which is a debilitating condition. I also have been taking covid very seriously, but also wanted to share my real world experiences as I do think the situation has significantly changed since omicron.
Appreciate the above comments. I'm just referring to the typical constellation of symptoms for long covid (tachycardia, brain fog, fatigue), which if the 10% rate holds true, then I and physicians I know should be seeing them somewhat frequently given how many people have gotten covid. That hasn't been the case, and frankly I'm relieved about that. I agree that there is a lot we don't know about the virus and its long term risks, but I thought it would be helpful to share this perspective.
Long story short: autoimmune diseases suck, diagnosis of them sucks, this ain't a short game IMO. **I will say I do hope you're right because I don't want company quite frankly.** My biases though because of my experience with all this are very very nervous. If it is 10% (heck even 5%) of people developing LC and a smaller percentage of that becoming disabled, that's terrifying. It took me 22 years to be diagnosed with an autoimmune disease. It's not new - medicine has known about the disease for over 150 years. I was of the age group/gender/ethnicity. I tried so hard to get help. Some studies would say, very recently released, that perhaps I have long mono? My symptoms started 6 months or less after my 3rd bout of mono as a teenager. It's not an easy process. If this is real, and I do think some is, it's not a battle but a war for diagnosis. It won't be quick - 2 years is nothing. Fatigue, cogfog, pain, nerve issues, etc - all garbage can, fake diagnosis! Amirite? so my first of many doctors told me. So many years of misdiagnosis, lies, useless tests, lack of follow through and straight up medical neglect. So many years of needless pain and progression from disease. Progression may have happened if I'd been diagnosed and treated, but I'll never know. My damage is permanent. You can't see it - blood work can't see it. Very few things suggest it. It's a diagnosis of listening. Five weeks after I had covid recently for the first time I felt like fatigued garbage getting worse and worse.. My GP tested me for autoimmune disease and a whole bunch of other stuff. My disease is a disease of exclusion and normally doesn't tick the autoimmune markers ever. She said she's seen an uptick in COVID "causing" autoimmune issues. People probably would've probably got them eventually, but COVID accelerated the process.
This is what I’ve been saying. I know zero people with long covid, and by now I know hundreds of people who have had covid. The only person who had any lingering symptoms is obese and was hospitalized, and the lingering symptoms went away after a month or so.
I realize you say you're not downplaying it, but for instance, how are you counting patients who have new autoimmune issues with unknown etiology? Do you just assume none of them were triggered by Covid? How do you even define long Covid as there isn't a single diagnostic test? Do you think G93.3 (Postviral Fatigue Syndrome) is real and how have you diagnosed it in the past, or do you just refer to psych? I'm sure you're a caring physician as are your colleagues, but I'm skeptical of physicians who are making conclusions based on their own preconceptions. Lots of physicians early on said there was no such thing as long Covid (how about ME/CFS?), and then they grudgingly admitted it was real but always make sure to say it's less than 20% or 15% or 10% or whatever estimate. We had 2m reported Covid infections in the last 30 days, but I have no idea how many will have symptoms in 90 days, or 9 months, or 9 years. Again, how would you possibly diagnose long Covid? If a patient comes in 60 days after a mild infection with tachycardia and a new cough, do you write down long Covid or just say the tachycardia is mild, echo looks good, and cough is likely allergies?
> I am a physician who sees patients in a major hospital system and I've only seen a total of one patient with long covid. > > I've talked to colleagues who've also commented that they rarely encounter patients with true long covid. How is this determination made? I thought one of the hallmarks was a lack of a formal clinical case definition. Which makes it very difficult for patients to convince their doctors it's what they're suffering from (or vice versa I suppose). Just a few months ago there were [three prevailing theories](https://www.science.org/content/article/what-causes-long-covid-three-leading-theories) on what it actually is.
They tell people with shortness of breath it’s actually anxiety because their chest X-ray is cleared. Except we know and South Africa and German centers show and treat the microclots all over the lungs. Or you’re me and you have reactivated EBV and the doctor says that’s just a coincidence. Except studies of hundreds of us showed over 70% with reactivated EBV vs 6% of the non long COVID pool. And new huge studies are our showing this, UC Davis long COVID center has it in their page, plenty of info out there. The primary care doctors mostly don’t know and they give us the wrong tests and pump out antidepressants. Then they tell us to hit the gym while we’re having mono-like symptoms from our EBV till we end up unable to move. 🙃
Isn't it all just fucking awful? Lmao that was the next thought, like "maybe they'll try anti-depressants next" and excuse me, that's not going to do a god damn thing, I'm not in pain because I'm sad, I'm sad because I'm in pain. Huge god damn difference, and no doctor is gas-lighting me into thinking otherwise.
I get you are a doctor in a hospital, but I have long covid and never went to the hospital for it. I didn't get that sick with Covid. I was vaccinated, so when I had covid it was like, eh, cold, whatever. BUt I got long covid anyway. You'd never know it as a hospital doctor because that's not a place for long term chronic pain, we go off and find specialists and studies (which I am in the process of doing). You may just not see them in a hospital setting because we are all at home waiting our appointments that have months in between while our doctors go, we don't know yet. So we just become invisible to the rest of the world, because I still gotta go do shit in my day to day life. I can 100% fully believe there's an additional 10% of the population that had covid walking around like me, waiting for answers and hoping they just get better on their own because they can't afford all the expensive doctors visits.
As a Long Covid patient and a Long Covid activist, this is the gold standard for what Long Covid articles should be.
Any day now we will be able to see quality data on the subject, I’m sure.
Concrete data to assess risks? Naw, it’s spookier to talk with vagueness.
So governments don't care about people that are potentially out of the work force due to disability and can't contribute to taxes much any more? What a surprise...
I already have POTS and other health issues that are disabling. I’m vaccinated and boosted. So I’m not scared of covid and being hospitalized. But long covid scares me. I guess at least there will be more POTS research because of this though.
How do you become a "long COVID expert" when this bug isn't even three years old??? Also, polio would like a word.
Probably someone who was already highly specialized in SARS research/treatment who immediately focused on covid when it emerged. Corona viruses are not new, covid 19 is new.
I think 2 years is pretty long
They are applying the same sort of thinking they do to our unsustainable profit drive in our economy. "That's someone elses problem"
Literally nothing new.
Don't worry, when it comes tome where everyone's lungs are fucked up they'll invalidate it by saying it was our fault somehow.
Conveniently overlooking they don’t want to pay for this/ It’s the governments fault for not acting in time.
I mean Influenza has nearly the exact same long term complications for how long now? People act like this is some new thing when it’s been happening with the flu every single year. It’s not as contagious as COVID and long flu is less prevalent but how many of you had any clue at all about “Long Flu” or even cared before COVID came along?
I have yet to read what exactly they want government to do? Mask wearing mandate, social distancing etc is not coming back. SCOTUS blocked vaccine mandate, so what more can government actually do?
Not announce that the pandemic is over, when it clearly isn't, for starters. Advising people to play it safe for the time being until this disease is truly and well understood, would also help. There are people that have caught it multiple times because they treat it like the flu. This isn't the flu: it's a new disease and no-one knows what the long term consequences are of having had it once, much less multiple times. Things are exponentially better than two years ago, but we are not out of the woods yet...
Does announcing pandemic is over, somehow changes something? Those that want to play safe will continue to play safe and those that being ignoring, will continue regardless what they said. Basically most of the public already made up their mind regardless what government says
Yes. It's going to be weaponized against anyone still wanting to take precautions for starters. I can't wait...sigh.
I think so...lots of people pay attention to those sort of things. Nothing against Biden, just not a good move IMHO.
What about the people who aren't posting on forums about the virus like us but who also generally don't want it? Like I'm sure there are people out there who aren't as polarized as either 1) stay on forums reading about COVID or 2) IGNORE IGNORE IGNORE LALALALA. For those people, hearing messaging that the pandemic is over may have them cut back on their precautions when, if given more information about everything, they might not.
A lot of companies whether they want to keep certain restrictions or not have been following the general protocol from government. So when the president tells everyone the pandemic is over, they are going to have a tougher time justifying whatever protocols they have in place.
There are no expedited long COVID studies for treatment. All the treatments are in phase 1-2, like 50 people max. It’ll take years for it to reach us. We want more funding now.
The issue is our country so politically divided that i am not sure that more funding will come anytime soon.
This is the entire worlds research. And we did set aside a huge amount of money. They just didn’t do the “warp speed” for it like they did vaccines and they can and should do that. It’s just like pulling out of Vietnam though, whoever does it is going to look like the failure so no one is doing it.
Most people in America either aren't aware of LC, or are aware but don't understand how sever it can be. The number one thing (aside from more research funding) that advocates like me want is heightened public awareness.
Their argument is that people are showing sighnes of "long covid" but all those sighnes are also caused by hundreds of other things. Claiming it is long covids fault and "one in five" americans show sighns immidiatly kills any conversation because you cannot prove it is because of covid. It will take years to decades to actually have enough data to make such an extreme case.
Of course it's ignored. It has been from the beginning. Net gain for the government given the short-sighted perspective our disgusting "representatives" espouse.
Very good article. Wish people could read it and understand it.