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These numbers don't look so great long term. Especially the no PCC group. The good news is that recent research suggests we can start aggressively targeting virus in trials:

https://www.nature.com/articles/s41590-023-01724-6

https://www.medrxiv.org/content/10.1101/2023.07.27.23293177v...

There are a lot of exciting trials going on for many different antivirals, monoclonal antibodies, immunomodulators/immunotherapy, and even novel molecules to help clear out viral persistence.

I am starting to collect these budding treatments & patient stories as they come on a website here:

https://www.lctreatments.com/

There was some recent study where most patients who received monoclonal antibodies regressed rapidly so I am not sure that's a good pathway. The hypothesis is that the covid antibodies are quite nasty so the body creates anti-antibodies that in turn resemble the original virus wrt certain effects and one ends up in a cycle of doom that first needs to be broken before one starts getting better.
Link the study.
Can't find the paper as it was in 2021 but here is from someone who did it:

https://old.reddit.com/r/covidlonghaulers/comments/1acpmjc/i...

Are you referring to this preprint?

https://www.biorxiv.org/content/10.1101/2023.11.21.567575v1

Regardless, you trust a single redditor's comments with no verifiable proof over peer-reviewed science and on-going clinical trials?

It's one datapoint. Not sure why I should by default distrust somebody whose life was ruined by it and is essentially involved in a human-style reinforcement learning crowdsourcing trying to figure out how to recover by sharing what worked and what didn't.
Trust but verify comes to mind here. I have personally tried to verify this because I work on a project to bring all stories(good, bad, neutral) on novel therapeutics + Long COVID and I have yet to be successful in verifying this with the poster over a couple months.

They told me previously to reach out to a specific Long COVID advocacy group and when I did, that group replied with very limited data as no one had really tried it. Now they are claiming it is a Facebook group with this new post, so something is not adding up here. Let alone all the other public anecdotal and research evidence suggesting the opposite or being neutral. I will continue to try to verify, but I hope you can see why we cannot just trust what is said on the internet as truth.

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Cognitive slowing squares with the depression hypothesis.
More like with neuroinflammation and brain hypoperfusion? Both present and measured in long covid sufferers. M1 polarized microglia, damaged endothelium, dysfunctional mitochondria...
> just that there is no real evidence of this being a real disease

What does this even mean? How do you define a 'real' disease?

Sounds like a god of the gaps fallacy to me. Just because we don't understand and can't treat it yet doesn't mean it's not a real disease. At the very least it looks like a cluster of various kinds of diseases.

Looking at the history of things like fibromyalgia and CFS (remember when that was called “Incline Village Yuppie Syndrome” to dismiss it?), I think your god of the gaps comparison is quite apt and it seems like it’s especially used to minimize diseases which affect people unlike the speaker. It’s no coincidence that all three of these are associated with women, for example.
There is no evidence that your claims are worth anything.

There are tons of known mechanisms, biomarkers, documented physiological alterations and on and on and on.

Do take note that “there is no evidence for x” is an absolutely gargantuan claim. If you intend to carve swathes of epistemological foundations into the void you better have something a little sharper and a little more substantial.

Ironically, the claim you've made in your comment carries exactly as much weight as the claim of the person you're replying to does, which is zero, as both of you have just typed out some generic wide-sweeping opinion about a topic without linking to a single piece of data to support your claim.
Not quite.

I am armed and ready with sources as part of the game, and the statement on epistemology hardly needs qualification.

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The definition that the CDC created backs up my statement. "Long COVID is not one condition. It represents many potentially overlapping entities, likely with different biological causes and different sets of risk factors and outcomes."

https://www.covid.gov/be-informed/longcovid/about#term

Any pain or psychological issue you have after covid can be categorized as "Long Covid". Which is ridiculous because if covid never happened we wouldn't expect joint pain and depression to go away. Those things existed long before covid and should have been expected to exist after covid.

Non reproduced studies that cherry pick data to fit the conclusion do not refute these facts.

The CDC statement does not back up your claim. Neither of the two diseases you mentioned are actually caused by anxiety or depression, and the CDC is not saying that anything you have after COVID is long COVID but rather that the real problems people are having do not have a single simple cause. This is true of many other things - consider how family history, diet, exercise, sleep, past infections, pollution, etc. all affect who develops heart problems or dementia - but if those have unambiguous symptoms, we don’t have people coming out of the woodwork to say that they’re imaginary or the result of poor moral fiber. Not everything is that easy to link to a cause - think about what we now know about tick-born diseases versus how sufferers were told they had a psychosomatic condition or weren’t eating right back in the 80s – but that only means that medical researchers need more time and data to understand the very real things patients are experiencing.
So if the real problems people are having "do not have a single simple cause", why are we calling it "Long Covid"?

The name implies that there is a known cause, and the diagnosis IS Long Covid.

Because diseases are complicated and your body’s response involves a number of factors. We know that there is a large group of people who had no known health conditions prior to some number of COVID cases, at which point they did have a chronic condition, and tests have failed to link it to other known diseases. This again is similar to other things - for example, arthritis has some components like age or genetic predisposition but also risk slog goes up with things like obesity, smoking, exposure to certain chemicals, or bacterial / viral infections in and so there isn’t a simple cause or effect relationship because for any given trait you can find people who have it but did not develop the condition or vice versa. What researchers have done is find correlations in large groups to identify how the many factors increase your odds of developing the disease - even if most people don’t develop it, we have a large enough population that many people will.

Long COVID is similar in that they have identified risk factors like age or not being vaccinated and have some theories for the underlying mechanism and biomarkers which hopefully will make it easier for clinicians to identify patients or warn people with high risk factors.

https://erictopol.substack.com/p/lighting-up-long-covid

Correlation isn't causation. The highest risk factor of Long Covid is probably frequency of hearing about it from social media. Much like Fibromyalgia.
I would strongly suggest reading the previous link and the Science paper it leads with (https://www.science.org/doi/10.1126/science.adg7942). When a large number of medical professionals say there’s something real and there are peer reviewed publications in top journals discussing options for treatment, it is highly unlikely that some rando with no relevant expertise is correct in arbitrarily dismissing it.
I would strongly suggest not blindly trusting "peer reviewed" and "top journals", especially on topics that are not easily provable.

"We conclude that despite widespread use of narcotic drugs in hospitals, the development of addiction is rare in medical patients with no history of addiction. "https://www.nejm.org/doi/10.1056/NEJM198001103020221 "Our analyses clearly show that SARS-CoV-2 is not a laboratory construct or a purposefully manipulated virus." https://www.nature.com/articles/s41591-020-0820-9

Over 14,000 published articles suggest otherwise:

https://www.ncbi.nlm.nih.gov/research/coronavirus/docsum?fil...

Don't forget the use of bots, AI-generated articles, etc.
Are you implying there are 14k articles produced by bots just about fibromyalgia? ChatGPT isn’t even 2 years old!
No, I am implying that 14k articles were produced on the topic of Long COVID clearly differentiating it from "fibromyalgia". Which is a viewpoint only shared by a select few not even researching the condition.

These syndromes are best described by their respective pathogen: https://www.nature.com/articles/s41591-022-01810-6

EDIT: Sorry, you were talking to someone else. Disregard this comment.

Not sure if others have experienced this, but you tend to forget nouns (object names, names of people, places, etc) after getting hit with COVID. I googled about this and something called "anomic aphasia" came up.

I often caught myself saying "that thing" many times because I couldn't recall the names of even basic objects or street names, etc after getting hit with Omicron.

Just curious if others have experienced this as well.

Sounds like having children. My mum could never get our names right and I could never understand why. Had children, now I do exactly the same thing. Still don't really understand why though tbh.
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Since 2019 I've been:

- Vaccinated for COVID once

- Infected with COVID 3 times

- Infected with RSV once

- Infected with unknown ?? upper respiratory, two times.

I am absolutely less "sharp". It feels like both my cognitive and physical ability have taken a serious blow. I'm far less creative, less excited about work, less interested in challenging topics, and less capable of solving complex problems.

I will sometimes stare at my IDE and find myself unable to write a single line. It takes minutes of reorienting my mind to find context again and beginning to put some stuff down.

And that's for languages and projects that I already know.

I'm trying to learn a new programming language now in a new domain, and finding it very challenging. I'm not sure if this is the direct result of COVID, or if it's just part of getting older... maybe it's both. All I can say is that it came on quickly and definitely feels like something changed in how my brain works. Sucks.

The obvious answer to this that I believe you already know is to check with health specialists. The part of being older and/or changing interest is another factor to take into account.

Since we are slowly understanding more things about COVID and other diseases you can also try new things and no believe 100% in what is published. Trial and error is a good problem solving skill. For example, engaging in new activities that "play" with one or more of our senses (e.g. music).

Vaccinated three times, had it twice. The first time, no long term effects. The second time, well... I think it is getting better, but I feel you. Stuff I know I know the solution to, I know I can do in the blonk of an eye just seems to be hidden behind some wall of fog. Takes sheer willpower to get through that, then it is done in a heart beat. After that, my energy seems to be gone.

Wasn't a problem at work, for now.

Physically, well, I am low on stamina. Did hit the gym since, I don't feel like 2 hours of boxing are a particularly good idea at the moment.

Sucks, you are right. My significant other so told me it goes away, and sometimes I feel close to break through whatever that shit is. Still better of than a friends son: 10 years old, unable to follow school since October, unable to do more than 2 hours worth learning per day, unable to excercise. All this despite being fully vacinated three times, the second time Covid hit him, it hit hard. I can only imagine how it would be without vaccination...

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That's interesting because after the first time I got COVID, I honestly felt OK. It was after the second time that I felt like "hmm, have I fully recovered?"

After the third time, that's when I felt for SURE I was struggling relative to before. Granted, I've had other infections over the last 3 years so it's hard to say it was all COVID.

How do you distinguish the feeling of being less sharp from the psychological impact of lockdown?
Are there any studies that locking down has long term cognitive decline? Generally most of the time when I’m locked down I’m chill energy but as soon as I’m regularly out and about I’m back to normal within weeks. I’ve never heard of being unable to do extremely basic exercises after the lockdowns (which were maybe 2 weeks actual isolation if you were exposed, every other time you could still spend time outside, get groceries etc). I’ve never heard of being unable to think of words or program a single line months after a 2 week isolation.
fine. I believe you because I am experiencing the same things.

did you eliminate depression as a possible cause? I don't know how. there is no "expert help" in my country. I believe everyone around me is faking whatever they are doing, including therapy.

another thing to note: isolation. i think my isolation level just kept increasing. i entered a hole with the lockdown and i never got out, contrary. isolation could be a cause of cognitive impairment, yes? we are social animals?

can you make any sense of what i'm saying?

p.s. also my short term memory is broken.

p.s. I am also becoming increasingly paranoid because of this apparent cognitive impairment.

Do you exercise?

I forced myself to do workout classes like it was important non negotiable work

no :-| for various reasons, invented or real: 2 big physical injuries in a sequence, depression, tv... at least 2 years of stationary life. there goes the real root of my (our) cognitive impairment, no matter how much i want to blame an external uncontrollable factor.
find a reason to walk brisky everyday, it sucks when its cold out but my dog is my reason.

The physical injuries are always challenging to work with when trying to be active. My wife deals with all kinds of tendonitis and knee and ankle setbacks.

You gotta dig real deep somehow and fight for it when you got a setback like long covid or injuries.

Hey, to chip in: try cardio, especially running. Men loose muscle mass with age, as you are already aware, resistance training is important, but cardio should be on top of your list.

I was there with you in terms of brain fog, general mental slowdown, what is called cognitive decline, and mind you, I presume we are healthy, without cognitive degeneration or serius injuries or conditions.

Running 3 times per week should get you on track in about a month. Try it and notice the difference. We are made for movement. If you're healthy and don't feel like running, in my case, i immediately know i should be doing the thing I don't feel like doing. Running. 1x interval training, 1x hill repeats, 1, long run in cardio zone 2. If you can, get s Garmin watch. Stats will help you maintain focus on the big picture. Streaks can help reframe for consistency.

I started training when corona hit, this is the best I've felt ever. Slowly progressed to cycling on off days for better recovery. Bought smart watches for friends, now we keep each other in check, we sometimes even meet at the pool at 6 am for a quick swim session. I now do some kind of activity 6 times per week. If i ever stop working on software, I'll help others train and get better to feel good and feel healthy - that's how much it gave me and i absolutely love it.

hint: optimize for training the next 20-30 years (I'm 39) which means injury prevention, recovery activities, everything else as nutrition and rest follows as you observe your own body and get in tune with what it needs. Honest good luck to you, I'm excited for you!

Agree. Also testosterone. I was lucky enough to have lab work before and after getting covid twice. My T numbers halved in less than a year. I was still within the “normal range” so it took some arguing with the doctors to get a prescription for a very low dose. Within 24 hours of starting, I felt like myself again. Brain fog was gone, energy was back, my mood rebounded. No negative side effects thus far. I had tried a lot prior to starting: intense therapy, ketamine, lots of exercise, losing weight, supplementation, lots of lab work. Nothing was as impactful as getting that jab.

Side note: the normal range for T is so wide that it’s meaningless.

The challenges here is that testosterone was found to be lower for folks with covid/long covid. So your observations add up.

https://www.thelancet.com/journals/ebiom/article/PIIS2352-39...

> A significant proportion of male COVID-19 patients also display persistent low testosterone levels, reminiscent of absent or aberrant GnRH production, and SARS-CoV-2 has been shown to invade the brain. Taken together, these findings raise the possibility that in such patients, the GnRH system may be infected or dysfunctional, leading to the accelerated aging and cognitive deficits observed in patients with “long-COVID” or post-COVID syndrome. However, in what way and for how long GnRH neurons or their function may be affected in COVID-19 patients is still unknown.

This piques my interest because when I first started noticing these symptoms that's actually the first thing I thought of. I'm in my mid 30s and I've heard that's around when T starts to drop off. Probably worth mentioning this to my doctor eh?
Doesn’t hurt. Be prepared for resistance though. The steroid taboo means there are very few doctors in the US that are both experienced and comfortable prescribing.

I saw massive results at 1ml per month, try pitching that. The dose is so low it rules out abuse and lowers the possibility of side effects.

Re: running / activity...

I've always been a runner of sorts, but not super consistent. On average I would say I run 2-3 miles a week. But that could mean 15 miles in 1 week, followed by 2-3 weeks of low, or even zero running.

My main problem is consistency and I can only hazard a guess that its consistency that produces the really beneficial effects? Because on those weeks where I do run a lot, I generally don't feel much better. In fact, in the last 2 years I've started feeling worse. Beat down, tired, and not energized by the run.

I've recently tried going from distance running (5 miles) to speed running. I'll run two miles, in a 6:30 pace, rather than 5 miles in a 8:00 pace.

The result is actually a much more brutal feeling, with much heavier breathing, and much more soreness. But surprisingly, I actually feel a little bit of that positive feeling. I've only JUST started doing this so its too early to tell, but the really high cardio and heavy breathing seems like it may have some potential to reverse some of the negatives I've accrued.

To sum it up - I've actually always been active and I'm in good/ok shape, but I generally am not really pushing it. I run distance, not speed. I rest a lot. Maybe I'm just not active ENOUGH.

I hear you. Consistency is key. Scheduling a race few months in the future can clarify the immediate 'why' - the big picture is not the race but health. The path is the goal, really. This becomes clearer with consistent training. Like with anything, progressive overload comes naturally as consistent training builds endurance and an/aerobic capacity. You just operate at the increasing levels of effort your body and mind can handle. Consult your doctor if any health concerns arise as you progress and observe your body. Good luck, I'm off to my morning run!
When/if biomarkers come out, you should do a test for Long COVID. The persistence studies are pretty telling and it is very possible that lingering viral antigen may be causing these issues for you and a large chunk of the global population.

Other folks like me have more syndromic Long COVID where it affects many more organs and it is a bit more obvious that it was a direct result of a COVID infection or vaccination(post vaccination syndrome is absolutely a thing).

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> I'm far less creative, less excited about work, less interested in challenging topics, and less capable of solving complex problems.

So, just to point this out: none of those symptoms are remotely unique to Long Covid, or any other disorder. They correlate with real/known/unsurprising conditions like depression, alcoholism, aging and even stuff like poor diet even more strongly than with covid; and of course they're the kind of thing we all deal with as we go through life. No one works at peak performance through their whole career. Everyone has rough patches.

Does that invalidate your covid experience? No. I'm just saying this is the kind of thing you (and I, and all of us) were going to deal with at some point anyway.

Yup, that's totally fair and correct.

I honestly do not know if its related to COVID or if I'm just getting older and my body / mind are finally starting the inevitable downward spiral that takes place over the next 30-40 years.

It's hard to say for sure. All I can say is, relative to who I was in 2019 I feel like I'm easily 50% of that person both physically and mentally. Maybe that's "natural" for someone in their mid-30s, but to me it feels a little accelerated.

There's nothing natural about a downward spiral in your mid-30s. I mean there will be some gradual deterioration but biologically a significant downward spiral doesn't have to hit until your 70s. There are plenty of masters athletes still turning in great performances at advanced ages. And they aren't genetic outliers; mostly they are just persistent and consistent.

Before blaming unlikely exotic causes like "long COVID" I would suggest fully optimizing the basics: sleep hygiene, body composition, nutrition, exercise, sun exposure, alcohol, etc. If you fix all that stuff and still feel worse than you did in 2019 then there may be something else going on.

https://peterattiamd.com/outlive/

https://www.hubermanlab.com/newsletter

When I was suffering from this I tried to hack it and what I noticed was that when I got more blood to the brain (e.g. by being upside down), it improved (for a minute or two). So that led to the brain hypoperfusion theory and then I decided to ramp up the red blood cell count to give my brain the ability to do more with less, by taking liposomal iron, lactoferrin and liposomal sublingual B12. This led to a massive boost that I could work normally for 8 hours (but had to take rest afterwards).
Do you have test results to show that your red blood cell count increased?
I've had 5 covid vaccines, and never had covid (as far as I know). My wife and kids all got it, I never did... and yes i tested a heap.

I got sick the other night, the first time I've felt sick in about 4 years... I was achey all over, I got the shiver and shakes and I was sweating non stop. I went to bed and had a very very rough nights sleep. but when i woke up I was fine.

Yet, I definitely feel like in the last 2 years my cognitive abilities have dropped. Also If I dont get at least 7 hours of sleep I'm just a zombie.

My typing accuracy and spelling has taken a massive nosedive.

physical activity is very hard... I used to cycle and do push ups etc all the time, but I'm really struggling to do a bare minimum now. It just feels harder, and I'm not getting the "buzz" or benefits I used to get.

I turn 50 this year, Its got me really concerned about my next 20 years of employability. I've given up drinking, I try very hard to get the sleep i need... but i'm just not seeing improvements.

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https://www.thelancet.com/cms/10.1016/j.eclinm.2024.102434/a...

Pre-existing conditions

For 111 of 194 PCC patients, we also obtained their history of pre-existing neurological/psychiatric conditions.

31 of them (27.9%) had pre-existing neurological or psychiatric conditions.

16 of them had a history of depression (n=14) and/or anxiety (n=3).

One had a suspected addiction to alcohol.

One had a history of bulimia.

Nine of them had various neurological conditions, for example, migraine, tinnitus, trigeminal neuralgia, rotatory vertigo, amyloid angiopathy, fibromyalgia, polyneuropathy.

Unfortunately, we did not acquire the information about preexisting conditions from our controls but based on their self-reported no history of neurological and psychiatric diseases, suggesting that they would have no pre-existing conditions.

“Self reported” is exactly the standard of evidence I expect from Covid researchers. Thank you for the thoughtful reply. Next up please control for vaccine status. Long vaccine anyone?
For me COVID somehow coincided with the most depressive period in my life. The brain fog and tiredness was something that I had never experienced before.

My context window was so narrow felt like I was operating at 2 percent capacity. It’s normal for depression to cause fatigue but literally cleaning my apartment once a month would drain me for week and a half. I love to journal I’d sit down and somehow words weren’t flowing. The entire system was haywire.

I ate well, started even going to the gym but only at the end of summer 2023 did my energy slowly come back. I was also mistakenly attributing this to getting older.

My mind is now alpha zero and depression is gone. Crazy times pandemic plus depression plus bad SWE market. It was basically hell and I thought Id never recover. Health is the most important thing in this life.

I am somewhat skeptical about the long covid thing. Not that the disease doesn't exist of course, but of the relationship with covid specifically.

To put it simply, we all got in contact with covid at some point. Some were asymptomatic, some mistook it for a cold, and some were confirmed cases. Plus there are vaccines, that are said not to be as effective at preventing long covid than they are at preventing severe (accute) covid. Some even say the vaccine itself can cause long covid-like symptoms.

So how many of these case really "long covid" and not just a condition no one really took into account before a global pandemic affected us all in a relatively short amount of time. There are some conditions that are known to get triggered with any kind of infection (ex: EBV), or other kind of disturbances. Covid is one of them, but so is the flu, or anything else really.

And then, there were the lockdowns, raise of remote work and all the resulting social changes. People took some weight, others lost some, sleep patterns, eating habits, etc... have changed for many people. All these could be potential triggers for some condition that while not caused by the SARS-CoV-2 virus, is a result of the pandemic.

I say all that because of a personal experience. In late 2020, I got unwell, very unspecific symptoms which felt mostly psychosomatic, and it lingered for months, with ups and down, and a global trend towards improvement. When I talk about it, "long covid" is usually the first suggestion, and I would believe it, except I didn't get covid at the time. No contact, no symptom, PCR and IG tests negative, etc... it was before I got vaccinated. I finally ended up getting covid for (I think) the first time last year, and it was a typical, milder than average case, with none of the "unwell" symptoms resurfacing. I still don't know what happened to me, and why, though the lifestyle changes caused by the pandemic may have something to do with it. But had it happened after a covid infection, I am sure it would have been attributed to it.

You are skeptical that a condition named after the pathogen itself cannot be attributed to long term sequelae?

There are so many studies that help answer all the questions you have on this topic. Peer reviewed and from reputable journals. LitCovid is very helpful here.

Quite a few studies have found the ME/CFS 50% of Long Covid tracks with ME/CFS from other sources, a condition caused by a number of different mostly infectious challenges to the body including quite often EBV. So in this regard you are right the symptoms and a lot of the biological changes track ME/CFS. In this case we know the causing infection so we may as well keep that information because it does help in studying it.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10278546/

But about half of Long Covid is other things, like heart attacks, strokes and cancer all of which are significantly up since the pandemic started across most of the world and showing up in excess deaths.

Its also worth keeping in mind the post Polio diseases only impacted about 1% of people who contracted the disease. Just because it only impacts a small number of infections over the world it can be a very large number of people especially when people are catching Covid so often.

My background: i have been vaccinated 3 times, but still caught Covid on May24, 2023. I’ve spent the following 8 months recovering.

I’ve been dealing with extreme fatigue, brain fog, headaches, migraines, dizziness, shaking, and more. It feels like I’ve had a concussion for 8 months.

But at no point did I have any issues with my lungs, heart, or anything below my neck.

Medically the condition is called PASC. Post SARS-Covid 19 sequelae. Sequelae is the key term. It is a term for “injury after an infection”. “Long Covid” isn’t a diagnosis, it is just the common name people are using.

And Long Covid SUCKS.

As the internist told me when, after a long and strange bout with covid at the very beginning of the pandemic (March to July 2020), he diagnosed me with fibromyalgia: "In the end, we may never know if you really have fibromyalgia or not. What matters is will the medication make you feel better."

And boy, did it work. Low dose amitriptyline changed my life.

PS: I was feeling like shit before covid. Covid only made it so much worse that it became impossible to ignore. For me and the multiple doctors I've seen at the time.