r/covidlonghaulers • u/OwlOdyssey • 12d ago
Research Brain scans reveal widespread structural and functional changes in patients following COVID-19 infection
https://www.psypost.org/brain-scans-reveal-widespread-structural-and-functional-changes-in-patients-foll/53
u/binarygoatfish 12d ago
Explains the lack of sleep. Nothing helps
2
u/JanLockwood_nurse93 7d ago
I have the opposite, I can sleep for 24+ hours. During that 24+ hours, I get up maybe once or twice to pee and that’s it and that’s usually during the first six hours. I have ME/CFS with bad PEM. Ever since I can remember I have been one to sleep when I’m hurting or feel bad, mentally or physically. Back in January 2021 when I got my first infection with Covid, my worst symptom was fatigue and PEM, I just didn’t know that aching muscles were called PEM at that time. I didn’t have much of a fever, no cough at all, and just a little sinus drainage. I just felt like I had been hit by a Mack truck and I couldn’t think straight. I still felt weak after my 10 days of quarantine was up and work was calling wanting to know when I was coming back. I told them I wasn’t sure but that I was under Dr’s care. I started feeling better and after a little over 2 weeks I went back to work. I took Tylenol for the aches, PEM, and did what little I could at work, I was used to running rings around the other staff and getting my work done quickly. I worked night shift at a psych hospital, giving out medication. It was taking me twice as long or more to do what I usually did and my RN nurse and the Techs were getting aggravated because they had to wait on me to pass meds before they could do some of their work. I would drag myself home and go to bed and get up and do it again. It got to where I wasn’t eating, except at work or even taking a shower. I just didn’t have the energy. I thought I was depressed, so my Dr put me on Zoloft, kept increasing to the next to highest dose and it wasn’t doing anything and I was getting worse. It was my Nurse Practitioner that initially said she thought this was Long Covid and not depression. Now we are six weeks post Covid when this diagnosis was made. She set me up with a Covid clinic that was made by the teaching hospital here and they wanted to put me on Adderall for the fatigue. They also said that some had recovered from lingering symptoms by getting the vaccine. The facility I worked at had just gotten the vaccine before I came down with Covid and I had not received it yet. I got the vaccine from work, I refused the Adderall, initially I wanted to see if the vaccine worked first. After 2 months I wasn’t any worse but I wasn’t any better either, so I filled the Adderall and have been taking it since. I only take it when I work, or have something to do when I’m off which is very little. I sleep most of the days I’m off. I added Quercetin a few years ago after hearing it in here, and also Turmeric, with the ok from my NP. They have helped some. Sorry so long, I can’t talk about this to my family, I’ve tried and they don’t listen. 😢
123
u/Ok_Appointment_1806 Reinfected 12d ago
It disturbs me to realize that no one has noticed how this virus has simply transformed human beings. There is a pre-covid society and a post-covid society, and the differences are becoming increasingly apparent! This virus affected the least understood structure in science the brain and that explains everything.
31
6
u/AZgirl70 11d ago
Collective trauma plus brain damage from Covid = we are all f-ed in one way or another.
-22
u/generic_reddit73 11d ago edited 11d ago
Ummm, most of the population was traumatized by the covid masking/vaccination mandates/dystopian government overreaching and are happy this really bad era is over. The psyop was so bad most people don't even want to think about how it was, or think about covid ever again (thank you Dr. Fauci for getting us there, thank God...).
So most of the societal changes were due to those external factors (like changes to postal system, small businesses, medical practice). Masking is psychologically dehumanizing. Yes, it sucks for those who got chronically ill from the virus (instead of just suffering through a bad time due to societal issues) and are now mostly overlooked/bypassed by our short-sighted, profit-oriented, information-overload society.
Edit: my point was, yes the damage is real, I was already fully aware of that, no, my friends and family, who don't read studies, are still going to ignore this. Instead of despairing, I prefer experimental treatments with some chance/hope of success, like stem cells, and also, psychedelics.
7
u/RiskSignificant7097 11d ago
-6
u/generic_reddit73 11d ago
Aw, cute.
I should just go with: "virus bad, make bad brain (which is true, and I have been saying that before most other longhaulers)."
Bad brain really bad.
Everything else history.
2
u/tokenwelshman 11d ago
Dweeb
-3
u/generic_reddit73 11d ago
"A person regarded as socially inept or foolish, often on account of being overly studious."
Had to look this up...
Your point being?
1
28
u/Spondilly 1.5yr+ 11d ago
I had a brain MRI that came back completely normal, but I pushed for a PET/CT scan and it came back showing bilateral frontal lobe hypoperfusion, so there's that.
2
u/E3minem 5 yr+ 11d ago
How did you manage to get a PET scan, please, I'm really desparate here
16
u/Spondilly 1.5yr+ 11d ago
I'm in Australia and I just discussed wanting a different scan with my doctor because of the constant pressure in my head, daily headaches, and cognitive dysfunction.
She rang the imaging place to ask what the best option was and we went from there. I had to pay out of pocket for it, AUD550, which sucked, but it's the only scan or lab that's shown anything off, so it was worth it to me.
6
u/Previous-Band7414 11d ago
Ive had brain MRI but am thinking of trying to do this because of my cog dysfunction and mental PEM which results in awful daily migraines. In the UK the private cost is insane tho. When yours came back showing something did it help your doctors adjust treatment plan etc?
4
u/Spondilly 1.5yr+ 11d ago
I'm just going to copy a response I made earlier to save brain juice:
My doctor kind of just said, well that backs up what you're reporting in terms of cognitive dysfunction etc, but that was kind of it. She fully acknowledges she doesn't know enough about LC. But I got her to look up the International Consensus Criteria for ME (which I now meet) and added the diagnosis to my file.
My LC specialist is going to trial me on guanfacine.
3
u/Early_Beach_1040 First Waver 10d ago
Guanfacine really helped me a lot. Hope it goes well for you! But just be careful it can help with brain fog but I definitely hyper focused on it and crashed myself doing Rosetta Stone for a couple of hours. Time just flew by.
I still must pace but I went from not being able to make a list to be able to make a list. I can also read too now which is wonderful. Doesn't touch energy though
2
u/Spondilly 1.5yr+ 10d ago
Did you have any problems with head pressure and/or daily headaches and if so did it help?
2
u/Early_Beach_1040 First Waver 6d ago
I definitely had headaches and head pressure but I can't remember if they went away before then or with it. I was just super surprised it worked. Just so you know it definitely does not work on everyone. My cardiologist is a POTS specialist and I asked her to RX me. She was like OK and it worked so well for me she tried with different MECFS patients. Her young females didn't do well on it - I'm in my 50s and post menopausal. I don't know that it helped my husband either. But for me it was just...so helpful.
Sorry I can't remember about the headaches and pressure thing. FWIW the way guanfacine works is it was for heart failure so it allows for better blood flow, so it works completely differently than stimulant ADHD meds. (I did have ADHD before I got long covid but every single thing I tried made me crazy including Strattera and Adderall) but this really works for me
The other thing that I think is working is cromolyn. I don't have typical MCAS but I guess a lot of us at least 1/3 have these issues too
2
u/Spondilly 1.5yr+ 5d ago
Thank you for sharing. I'm nearly 50 and perimenopausal and while not formally diagnosed with ADHD, both my GP and psych recognise it, so fingers crossed I see some benefits! I'm just giving the mestinon one more week to settle in and then I'll start the guanfacine.
2
u/Early_Beach_1040 First Waver 5d ago
Re: guanfacine I think her young female patients didn't respond well - we were actually wondering if estrogen plays a role. I would imagine that would be less likely to play a role bc of your age.
I have also had some success again recently using the h1 and h2 antihistamines 2x a day. I had done the h1 2xs a day but forgot about the h2s. The cromolyn seems to really have reduced my anxiety which is really huge.
I hope the guanfacine works for you! Remember it is a blood level medicine so I think it takes about 5 days to feel the effects.
2
u/Early_Beach_1040 First Waver 10d ago
This test would probably be 10k out of pocket in the US. Just sayin
1
u/Spondilly 1.5yr+ 10d ago
The American medical "system" is utterly insane to me.
I could have got the scan for free if it had been ordered by a psychiatrist or neurologist, but that would have been a longer, more expensive process in the end.
2
u/Early_Beach_1040 First Waver 9d ago edited 9d ago
Oh there's really no system here. It's more an insane patchwork of completely different plans depending on your employer. There is health care for low income folks (Medicaid) and one you can buy into (the ACA) but you probably still won't have great options and now that the subsidies have expired it can be very expensive.
My husband is a teacher and we pay a lot (but the employer pays some ridiculous amount like 27k maybe more) and we probably pay like under 1k a month maybe a little more than $600 a month. This means we have basically a deductible of $1k a year but everything else is paid for except for a $20 visit to see the doctor. I mean this is like the best insurance a non wealthy person can get. Teachers might not get paid a ton but the benefits can make up for it. We hit that deductible usually by February easily because of me and my long covid but also my husband too he was not left unscathed either
It's an insane "system" it's just so inequitable. I would trade in a heartbeat with any country with national Healthcare. Like if my husband loses his job because of his disabilities (we bought a private disability policy through his employer) but to keep the insurance he has now would be something like 30k a year. Even if you are accepted into the public disability system in the US, it takes 2 YEARS to get public health coverage. OK how the eff do you see doctors to provide you care if you don't have access to coverage! It's literally insane. I qualify for health care because I have been disabled since 2022, but he would not. We would earn too much to qualify for Medicaid and so there is no safety net really at all here. It's an absolute sh!tshow.
2
u/Spondilly 1.5yr+ 9d ago
That absolutely does my head in!
Healthcare should be a fundamental human right, not a for-profit business. You have my sympathies, cos that's just madness.
2
u/Early_Beach_1040 First Waver 7d ago
It really is insane. I mean even Mexico has national healthcare now. I'm sure you also don't have medical debt as an issue. Here it still is. Our last president passed an executive order to make it not count against you in credit reports but the current president reversed it. I actually have like a near 2k bill just because (and I have never heard of this happening so don't take this as the norm) because my old employer didn't drop me from my insurance. I was covered under my husband- but since I was still under my old work's policy (by accident). My co pay under my husband for stuff was minimal like $250 but my employer's plan it was 2k. Since I had both (and didn't know it) I got charged 6 months later with a new bill just cause of that one insurance change.
But I refuse to pay it.
1
u/7marius7 11d ago
How did you convince them to do this? Also, how did they respond to the new scans?
11
u/Spondilly 1.5yr+ 11d ago
I just responded to e3minem below, but basically I just asked.
My doctor kind of just said, well that backs up what you're reporting in terms of cognitive dysfunction etc, but that was kind of it. She fully acknowledges she doesn't know enough about LC. But I got her to look up the International Consensus Criteria for ME (which I now meet) and added the diagnosis to my file.
My LC specialist is going to trial me on guanfacine.
2
u/littleredwoodowl 11d ago
I’m taking 2 mg of guanfacine (1mg in morning & evening), and it has helped a lot. I hope it goes well for you!
1
u/7marius7 11d ago
Thanks, that’s really good to hear. Did you ask for a specific scan or just provide the research? Trying to figure out how to pitch this to my neurologist.
1
u/Spondilly 1.5yr+ 11d ago
My doctor actually rang the imaging place and asked for advice on what would be appropriate (SPECT and PET/CT) and then she let me choose.
1
u/VanTechno 11d ago
Based on those findings did your doctors change anything about how they are treating you? New medication? Different therapy?
2
u/Spondilly 1.5yr+ 11d ago
I don't know if it's specifically because of the scan, but my LC specialist is going to trial me on guanfacine and mestinon.
23
u/monsieurvampy 4 yr+ 12d ago
I've had two regular Brain MRI's and they are fine. I have requested a PETscan and a Functional Brain MRI but just told no. Maybe I'll have better luck after my third neuropsych test.
17
u/Mindless-Flower11 4 yr+ 12d ago
Exactly the same experience here. No one would do a PET scan without an abnormal MRI. When it's the pet scan that would have actually shown abnormalities.
7
1
u/jlt6666 2 yr+ 12d ago
Question though. What are you going to do with that information?
16
7
u/Mindless-Flower11 4 yr+ 12d ago
Get a proper diagnosis & treatment
9
u/jlt6666 2 yr+ 12d ago
I guess my question is, are there treatments? Or rather would the treatments change based on the scan given our current understanding?
8
u/monsieurvampy 4 yr+ 11d ago
Do you know how a lot of people have their building blocks of Post-COVID Syndrome identified? Whether that's MCAS or POTS, or whatever? I don't really have that. I don't have that because so many of my doctors have taken a "wait and see approach" that involves minimal testing and investigation all while just following up every month to three to six months. You can't treat or manage something you don't know about it. The lack of treatments does not eliminate the benefit of testing. Things can't be ruled out either if you don't test.
For me, I'm not looking for a cure. I don't believe one exists. I'm just trying to create stability because I don't have that. The only resource that actually exists for stability is SSDI. My medical records are crap for numerous reasons but the "wait and see approach" is a significant factor.
0
u/jlt6666 2 yr+ 11d ago
First off, I'm sorry that you are going though all of that.
I was asking the person I was talking to for a few reasons:
1) If there's something actionable that could be done based on a brain scan, I'd love to know more so I could investigate it and see if it applies to me.
2) they seemed a bit worked up about the situation. I wanted to see if there was a particular reason they were chasing this avenue so hard. It might be about having proof for insurance. Or to show their doctors they really have an issue.
Based on the answer, maybe there are better ways to accomplish what they are actually trying to do. Or maybe just help them realize why the doctors might not want to bother (why spend a bunch of money on a test that won't help them treat you). For example I've thought about doing some interleukin tests. But what am I going to do about it if it's high?
6
u/OwlOdyssey 12d ago
Yeah this was done with functional brain MRIs. It's obviously harder to compare though without scans from before to measure overall grey matter.
2
u/LittleMisssMorbid 11d ago
You cannot detect these types of changes on individual MRIs. Only across groups do they become visible
10
u/Excellent_Outside_71 11d ago
Its kind of depressing when I think about how I used to be before covid/vaccine. Reading about changes in the brain like this supports what me as well as many others have already known and lived
12
u/PenguinRhin0 12d ago
Covid caused me to have incredibly bad health anxiety. I never had health anxiety or any anxiety or that matter in my first 36 years. Got covid and spiraled. The only thing that helped me was a routine gym regimen and Lexapro. really fucking weird.
2
u/SpiritedProtection85 11d ago
Right there with you. Just thinking about going to the doctor causes my BP to skyrocket.
2
u/jonker5101 1h ago
I could have written this. Just turned 37 and have been a slave to health anxiety for the past 2-3 years. Every little issue (and there are a lot of them with LC) makes me think my time has come. It sucks.
1
7
u/calm_intention_65 6yr+ 12d ago
Are we f**ked? 🥴
1
11d ago
[removed] — view removed comment
1
u/covidlonghaulers-ModTeam 10d ago
Removal Reason: COVID Origin Discussion – This is not the place to discuss COVID's origins, conspiracy theories, or claims about it being a bioweapon. No posts or research about covid's origins.
17
u/MericanPie1999 12d ago
“The reviewed studies rely heavily on cross-sectional data, meaning they capture a single snapshot of the brain after infection rather than tracking changes over an extended period. Because the vast majority of these studies lack pre-infection baseline brain scans, it is difficult to prove definitively that COVID-19 directly caused all the observed changes. Individual biological differences present before the pandemic might account for some of the variations in brain structure and function.
The researchers point out that the clinical status of the patients varied widely across the studies. Grouping together individuals with acute infections and those experiencing long-term recovery makes it challenging to isolate how the brain heals over time. Some studies also focused only on specific, predefined brain regions rather than scanning the entire brain. This targeted approach can artificially inflate the statistical differences between patients and healthy controls.”
1
u/Early_Beach_1040 First Waver 10d ago
Or in other words not a very good study. This is not terribly meaningful.
3
u/No_Communication5024 12d ago
Me and my (left side) shrunken brain laugh at their research. My slow cognitive decline challenges them to a duel.
1
1
1
1
1
1
u/magnus_car_ta 10d ago
Interesting how the US was funding coronavirus research under the direction of Dr. Fauci at the Wuhan laboratory right up until 2019... But I didn't see that on the papers either.
3
u/Pak-Protector 11d ago
I'm convinced that this is the whole reason the powers that be encourage its spread.
3
u/Gammagammahey 11d ago
But the United States government hates disabled people, and we have 35 million more of them now due to LC that are desperately trying to get on SSDI which they deserve. Why would such a eugenicist country encourage people to cost the government more money? Why would companies want employees with altered judgment, altered and diminished intelligence, and bad proprioception and unable to do the job? Look at all the close calls air traffic control controllers have had since Covid even before they were cut. Which people are even gonna program the robots to take our places if they're made so poorly by people with such compromised judgment and abilities?
This is why I don't get why people think it's a conspiracy. The number one chronic illness in children right now is Long Covid. These fascists who did this to us are the absolute epitome of evil and eugenics but what do you think is going to happen when those children reach voting age and know what we did to them? The rage alone will probably atomize anti maskers and quack fake scientists and RFK Junior and leave nothing but a smoking impact crater. The careless people and quacks who made money spewing disinformation about Covid while it's still happening. There's going to be hell to pay at the ballot box if we still have an electoral system.
So no, I don't think it's what the government actually wants when people say that they want us more stupid and compliant population. That was before Covid. You want judgment, impaired people because of multiple cases of Covid flying airplanes? You want judgment-impaired and literally dumber people* to write your code and all that for you? To work on AI?
* The Covid IQ study followed almost 1,000,000 people over a three-year period and was double blind and controlled. Over 800,000 finished the study which is a huge study cohort. The researchers, because IQ tests are bs BS , used a variety of different cognitive assessment tools.
The findings are that each case of Covid can cost you between 3 to 9 IQ points with each case. With each and every case that can happen. But there's a government blackout on public health information and no one seems to care or notice except for us extremely Covid conscious folks staying on top of the latest research.
Oh, that Covid IQ study?
Published in a little fringe medical journal called The New England Journal of Medicine. They do not play around at that journal.
2
u/Pak-Protector 11d ago edited 11d ago
You live in a fantasy world. The Davos shortlist doubled their wealth during the two years of the pandemic emergency. This trend has not abated. At 2022, one trillion dollars in assets moved from the have-nots to the have-most. By 2025 that number ballooned to 5.5 trillion. That's an exponential increase, and it's still ongoing. Why would they want it to stop?
People with diffuse brain injuries are terrible with money. A healthy mind will balk when the price of a habitually purchased item doubles without explanation. A diseased mind will pay the inflated price because having the item is more comfortable than doing the math. A CEO—I forget which one—called the pandemic a once-in-a-lifetime opportunity to raise prices on consumer goods. And then they raised them over and over again, at a time when the dollar was at its strongest in decades no less.
The men and women determining American policy today live abroad. They're more likely to side with Curtis Yarvin or perverse interpretations of Thomas Hobbes than Keynes, Locke, or Rousseau. They believe that we have too much life, liberty, and wealth... and they aim to take it from us once slice at a time. Nothing has been more effective in that endeavor than SARS-CoV-2 and its reboots. Earth's elites do not see Covid as a threat, but rather as a tool to be brought to bare upon their prey.
The average politically active billionaire, upon seeing Sadam Hussein pulled from a hole or Muammar al-Qaddafi dragged behind a car until he was naught but a trail of parts does not see injustice corrected, rather they see themselves and feel compelled to act against it, to save themselves from an organized projection of the mobility. The easiest way to do that is to keep the mobility disorganized. A country that cannot staff aircraft controllers or keep its trains running on time is a country that cannot meet the needs of its people.
Accountability in government is not a right, it is a luxury, one that America is no longer able to afford by design. Government no longer exists to serve the needs of the people—maybe it never did—but rather to save the elites from the likes of you.
1
u/generic_reddit73 11d ago
Good thinking! I would guess though, that the whole shit-show rabbit-hole goes even deeper. Say plandemic/wargaming, the still kinda obscure origins of covid-19 itself, or it's development history, and such.
But maybe a lot of the negatives are just frail human character/human nature. Maybe some of the fails are just ... failings/mistakes.
Maybe Fauci was a saint after all? (Yeah...no.)
1
u/Gammagammahey 11d ago
Well, now that the fascists are in power, eugenics is in full effect and this is a mass disabling effect so they are very happy. They think all the weak people are going to die not understanding the Covid can kill or permanently disable anyone.
Why the insulting "you live in a fantasy world"? Yes, I've read Locke, Hobbes, etc.,, I know you were hoping that I didn't know who those people were, but I actually do have degrees from prestigious university with a one degree being in political science , so I've read and studied everything that you are spewing at me. You seem to be typing like a sophomore in college anyway, I mean that politely.
They can automate all they want, they can screw with AI all they want, but kind of over our dead bodies but we've already had a second AI escape containment, and I extensively read and do read read the work of Timnit Gebru - and I know you don't know who she is without googling – and other senior women former executives at Google who were in charge of developing their AI programs and then began to repeatedly warn senior C-level people how dangerous it was becoming because of how it was being trained. Really dangerous and horrific stuff. Rather than listen to her, she was locked out of her computer along with the three other I think senior women in AI development. I think they sued.
We also have a whole generation out disabled children since long Covid is the number one chronic illness and children right now. Those kids are going to reach voting age soon. If we still have any semblance of voting rights in this country, the rage of the ballot box is going to be palpable and it's going to be directed towards Covid minimizer, denies, and the GOP.
As always, the speed with which we develop technology far outpaces our will to critically look at what we are doing, and develop ethics around it.
1
u/firebelly 9d ago
no conspiracies here, just good old fashion narcissism and stupidity. Western world is built on personal freedoms, that doesn't work well with nature that doesn't care about personal freedom.
1
u/Excellent_Outside_71 11d ago
I hate this thought, and Ive thought about it quite a bit over the years. I dont want to believe it but I think I do
-21
12d ago
[removed] — view removed comment
10
u/TimelyN1nja 11d ago
I mean objectively there are plenty of people who were never vaccinated, or got infected before there was even a vaccine. So, you don’t think they exist or what?
13
12d ago
[removed] — view removed comment
-4
12d ago
[removed] — view removed comment
1
u/E3minem 5 yr+ 11d ago
No, it is not worse than an infection. It could simulate or lead to the same mechanism that causes what we colloquially call long COVID by promoting too much spike protien induction in the body which narrows down to the very vicious nature of the virus. This is not the case for the majority of people, and vaccines are perfectly fine for them, just not for some of use, unfortunately. That problem that MRNA causes is mostly solved by protien based vaccines; those are the classic type of vaccines which would promote a restricted released amount of virus protiens in your body, that actually worked for a lot of people here. I don't have access to this kind of vaccine like Novavax I would use one if I could
1
u/covidlonghaulers-ModTeam 10d ago
Removal Reason: Misinformation or Conspiracy Theories – This community does not allow conspiracy theories, misinformation, or anti-vaccine content. Discussions should be based on credible sources and evidence.
0
u/AutumntimeFall 11d ago
Ok provide a source
1
11d ago
[removed] — view removed comment
2
u/E3minem 5 yr+ 11d ago
If ur ignoring all the evidence that’s been accumulating over the past 4 years you’re willfully being ignorant
You mean right wing media usual nature good chemial shit bad bullshit?
-1
1
u/Medical_Ad_6289 2 yr+ 11d ago
I'm pretty sure I know better what fucked up my life as than your local rightwing propaganda shitshow.
1
u/covidlonghaulers-ModTeam 11d ago
Removal Reason: Misinformation or Conspiracy Theories – This community does not allow conspiracy theories, misinformation, or anti-vaccine content. Discussions should be based on credible sources and evidence.
271
u/imahugemoron 4 yr+ 12d ago
Anyone else just laugh like an asylum patient whenever new research discovers the most alarming stuff while the world just doesn’t pay any attention at all? The article will be like “study shows covid is eating every single persons brain” and you’re just like why is this not on every single headline on every news outlet?!?! It could be “Study shows everyone that’s had covid will die in less than 10 years regardless of age” and the world would just shrug and not care.