A neurologist’s quest to solve Covid-related neurological disorders
chicagomag.com
chicagomag.com
> Of long COVID’s many possible symptoms, brain fog “is by far one of the most disabling and destructive,” Emma Ladds, a primary-care specialist from the University of Oxford, told me. It’s also among the most misunderstood.
> Long-haulers with brain fog say that it’s like none of the things that people—including many medical professionals—jeeringly compare it to. It is more profound than the clouded thinking that accompanies hangovers, stress, or fatigue. ... It is not psychosomatic, and involves real changes to the structure and chemistry of the brain. It is not a mood disorder: “If anyone is saying that this is due to depression and anxiety, they have no basis for that, and data suggest it might be the other direction,” Joanna Hellmuth, a neurologist at UC San Francisco, told me.
> And despite its nebulous name, brain fog is not an umbrella term for every possible mental problem. At its core, Hellmuth said, it is almost always a disorder of “executive function”—the set of mental abilities that includes focusing attention, holding information in mind, and blocking out distractions. These skills are so foundational that when they crumble, much of a person’s cognitive edifice collapses. Anything involving concentration, multitasking, and planning—that is, almost everything important—becomes absurdly arduous.
Like, say, autism, covid-related "brain fog" will probably have a lot of people dubiously diagnosing themselves, but it is still a real disorder with an observable set of symptoms that are being taken quite seriously by medical researchers.
I'd also remind people that it took several years of significant research resources around the world before HIV/AIDS became well understood once it spread into the western nations. Setting aside the obvious differences in severity, we've still got a brand new virus exhibiting many different behaviors in many people, and it's likely that we still have a lot to discover about its mechanisms and long-term effects.
I think ultimately what’s annoying is that even though there may be some real post-viral complications there’s probably a lot of people who are saying they have long covid that don’t. Long covid also doesn’t mean anything, could mean lung damage or it could mean brain fog.
If you follow the ling for the full study, you end up at https://jamanetwork.com/journals/jamainternalmedicine/fullar....
I recommend reading the comments, there are serious concerns about the validity of the study.
There are also fundamental math errors - which the authors acknowledge, search for "we acknowledge" in the comments. Funny part - even while acknowledging it, they still fail to do the math correctly - PPV is 39.7% not 59%.
Still not enough, read Esther Rodriguez' comment on the paper.
Still not enough, read this post on numerical inconsistencies: https://pubpeer.com/publications/0a3dd058f6fb53312c5ddd858ad... (Although I think this is possibly addressed by https://jamanetwork.com/journals/jamainternalmedicine/fullar... - but I currently don't have the time to follow up in detail)
The paper is, as the kids say, "somewhat sus".
Might be innocent mistakes. Might even still be a correct conclusion - but this paper alone can't stand by itself, and there's nothing else backing it up (as far as I can tell with a quick search)
Like having severe flu. But no outwards symptoms. No one believes you. You can sort of function in short bursts. But gotta rest constantly. Trying to think is very hard.
It's strange we live in a world of hyper-connected, hyper-monitored data collection but autoimmune diseases still have decades-long delays on getting a correct diagnosis. There's some real world changing stuff to be made in new tech connecting people to their root illness and allowing the voluntary option to visit a doctor to get it solved.
Someone who owns facial recognition cameras, could also analyze a swarm of other features, by the means of big tech style research and development. Gait analysis, body temperature with millimeter wave scanners, pose and skeletal estimation, arm->body ratio, skin pallor, hair length, face mood and health markers, maybe analyse mouth or teeth images with enough resolution and correct camera angle.
With pose estimation and kinematic animation you could start harvesting body language and mannerisms. Common ticks, impulsive behaviour can be grouped together.
If you also record and analyze speech, across phones and mall microphones, one could isolate out tourettes (and some speech pathologies?).
An awful lot of vaguery could be made clear...
I wonder if treating these diagnostic conditions like a programming language and organising the diagnostic routes properly, we could allow for a technique for the user in combination with a properly designed website, to individually narrow down their own experience into a doctors apppointment, and waste less resources on 'wild goose chase' doctor appointments, intiated by clueless patients.
What ever happened to Watson's autodiagnosing abilities?
IBM happened to Watson. They’re still around but I don’t think their approach is very good.
https://en.m.wikipedia.org/wiki/Timeline_of_peptic_ulcer_dis...
There isn’t a single person here that wouldn’t have said they think anxiety depression and stress are major issues in 2019. I’ll be waiting for someone to prove long covid anxiety vs just regular pre-covid anxiety. At the same time, are we ignoring a majorly damaged economy, recession, raising prices, etc?
I’d ask if that is long covid too, but the answer is yes, the debate is just differences in reasoning.
> Koralnik complains that no government money has been earmarked specifically for research into long COVID’s significant neurological manifestations, and that the NIH hasn’t assigned a neurologist to review such grant applications. “Therefore, it’s been very difficult, if not impossible, to get funded for the research for neuro-COVID,” he says.
Would difficulty getting funding bias early prevalence estimates?
Covid isn’t the only virus to cause ME/CFS and it isn’t even the worst. MERS is worse and was studied extensively. It requires a genetic predisposition that appears to only exist in 10% of people. Within that 10% there is a spectrum of severity with half recovering. Unfortunately as someone with the gene mutation for hEDS I’m extremely susceptible to it and do indeed have ME/CFS (predating covid) which to me is largely indistinguishable from LongCovid. I have a strong personal stake and have extensively researched it.
Both severe and death of or in addition to COVID relies on opportunistic infections, as multiple of your bodies' defenses are down.
I've always wondered if there was a parallel viral infection going around, that was discredited solely because somebody qualified never looked.
Given the overlapping similarities, might be worth a closer look, if it can't easily be attributed directly to the Sars-Cov-2 virus, just the experiencing of having COVID.
Paywalled on the article you link, so maybe it's explained more in detail there, but what does "the other direction" mean? Is this doctor claiming that depression/anxiety would protect against it? Or that it causes "the other direction" of symptoms e.g. happiness, relaxation? Neither of those seem to track with other reporting I've seen.
I understood that line to mean that covid-related brain fog may be causing anxiety, depression, etc., but I paused on that line of the article too.
I'm not one of the people that completely denies long COVID is a thing, but this statement seems strange. It at least reads as "it's not psychosomatic because it causes real changes" but a psychosomatic illness causes real changes without a clear cause.
They could be two unconnected statements poorly quoted, but "it caused physical changes" is too often used to dismiss a psychosomatic cause.
Many people with anxiety/depression/miscelaneous psychological diagnoses have conditions triggered by long acting neurological effects triggered by diseases such as viruses.
It's an inflammation-causing disease, and it doesn't seem to stop at the respiratory system.
Heart damage may not be permanent. Too early to tell.
[1] https://health.clevelandclinic.org/covid-19-can-also-damage-...
[2] https://publichealth.jhu.edu/2022/covid-and-the-heart-it-spa...
My last COVID infection was about 11 months ago, that I know of.
All this is to say that I'm not surprised by your comment at all. We'll never really know if my stroke specifically was caused by COVID, but I think it's becoming more and more that there are a whole host of ongoing health concerns directly related to it.
it makes me sad to read on hackernews how it's probably just depression, anxiety and we should not believe what "the media is telling us."
https://www.medscape.com/viewarticle/980527
“ In an analysis of almost 55,000 adult participants in three ongoing studies, having depression, anxiety, worry, perceived stress, or loneliness early in the pandemic, before SARS-CoV-2 infection, was associated with a 50% increased risk for developing long COVID”
So are people with HIV, Parkinson’s etc… I’m not sure how that is at all relevant here
It’s the underpinnings of many different problems. And think about it for a sec, if you found yourself hypersensitive to cortisol how do you think your brain would react?
Medicine isn't 'think about it for a sec' - you made direct claims using unscientific terms - Cushings is a very specific and relatively rare disease that has no realm of relevance here. Not sure where you are trying to go with this but it is obvious you have no medical background or standing.
And please enlighten me on your medical background / standing. I used to teach stats to doctors to help them understand medical tooling.
People with chronic fatigue syndrome have problem getting a diagnosis.
There is not enough meat to trust the experts, but you do you.
thanks for the "very helpful" suggestion.
I have a long history of psychiatric troubles such as C-PTSD, anxiety, etc. I have steadfastly resisted medication for it, but when I did accept medication I was afflicted with brain fog and other terrible side-effects. However, I recently committed to an organic diet of fresh fruits, vegetables and meals prepared from scratch. Contrast this with my previous diet of fast food, casual restaurants and plenty of delivery, and it was like night and day.
One of the chief benefits of switching to a healthy diet was the end of brain fog and an absolute renaissance of good sleep hygiene. I woke up with the dawn and I had plenty of energy throughout the day. I ate several small meals on a regular basis and I slept soundly and restfully. My blood pressure dropped to normal levels and I experienced much less stress, and I benefited from increased exercise through housework and meal prep.
As soon as I "fall off the wagon" and begin to eat restaurant food again, I return to horrible insomnia, brain fog, and reduced executive function. I have trouble working through the day.
So I can't blame the psychoparmaceuticals for this stuff anymore, it was 95% my diet. I'm super glad that I found a way out, and I'm grateful for the clarity and health promised by better lifestyle choices.
So, can you come over and cook for me? Because reduced executive function sure makes it hard to cook! Or even meal plan!
Also you'll have to figure something out for my incredibly picky 4 year old... good luck!
Another thing that makes a difference is self care: clean your place, throw stuff away, take a warm bath for relaxation (not to get clean), moisturize your body and be thankful toward it. Do some stretches for 15 minutes. Buy new towels & bedding. Buy something that makes your place smell nice. Wash all your clothes, bedding, towels frequently. If you have crappy old furniture, get rid of it, esp if it makes you feel icky. If you have permanent carpets, get rid of them and get wood floors or decent tiles. Try to get rid of all plastics and replace it with glass (kitchen) or cotton (clothing & fabrics).
If you are used to always having music playing, experiment with music deprivation for a few days, or at least, music without lyrics.
Not going to get into alcohol consumption, nicotine and cannabis - they all have effects on your mental state and modulating how often you use them makes a massive difference.
Lastly, do get therapy (and medication) if you need to or a good friend you can talk to, it makes a difference. Walks in nature while talking about life can help.
Try to prefer long form content over short ones, especially comments. Reading hundreds of comments a day is like having hundreds of conversations a day - it will exhaust you. By extension, do not do it before bed. Leave your phone in another room to charge. The bedroom's purpose should be rest and relaxation (sleep & sex & self care) only. Try to remove every other thing from it that gives it more functions (tv/desk/excercise equipment). Do not eat in bed.
Remove work email/chat programs from your phone if possible. Switch off notifications for all apps except a handful of apps. Mute all group chats if you are on WhatsApp/similar. If you use slack, you can set you active hours so it won't send notifications.
Remember to schedule leave, try to take at least one day off a month to do nothing (I recommend spending time in nature if possible). Travel to a different part of your city/province if you can, a change in scenery is good.
Basically, you need to curate exactly what your time and attention span gets spent on every day. You only have so many "attention points" to spend, so make sure you spend them on stuff that matters to you. Automate the things that you cannot escape (getting a dishwasher is worth it washing dishes agitates you or you spend 2+ hours a week on it). Calculate how much you are worth per hour in money terms, when deciding to buy something or paying for some service (like getting a cleaning crew to clean your place instead of doing it yourself).
As does Johns Hopkins: https://www.hopkinsmedicine.org/coronavirus/pact/index.html
Something to consider: maybe it's your usage of long covid that's incorrect?
If you investigate you'd probably be surprised just how behind the 8-ball these institutions are. Their inability to predict the bleedingly obvious as corona viruses have a history of triggering ME/CFS. Their many decades of gaslighting patients and recommending harmful treatments such as exercise and cognitive behavioural therapy.
Those of us from the ME/CFS space knew this was coming and knew people with Long Covid were going to be gaslit so we've been educating them on what to expect and how best to treat it. Plus we don't mind that they're rebranding ME/CFS as Long Covid as we'd like these institutions to actually do their job and do some research. We're not expecting an apology for the decades of gaslighting. The main thing we want is for people to not waste time rediscovering what we already know. Conflating the Long Covid (ME/CFS) part of PASC with the organ damage part muddies the water and diminishes focus.
Hope your smell returns sooner rather than later. My mom has been without hers for 9 months now, which seems to be in the rather unlucky category.
I don't see anyone claiming loss of smell is long COVID, it's two entirely different things, loss of smell is symptom of COVID and you can have it longer or shorter. "Long COVID" is now catchphrase to cover pretty much anything for hypochondriacs. Sure minority of people claiming they have long term issues after COVID can have something which we could call "long COVID", but most of people claiming they have long COVID are hypochondriacs. Ocassional headache? Long COVID. Tiredness? Long COVID. Etc. I've had "long COVID" years ago before COVID.
Honestly I'm not surprised US nation addicted to drugs especially antidepressants is major nation experiecing long COVID, while this long COVID pretty much doesn't exist poorer the country you go and it's exclusive to few western countries.
If you had to just try 2 of them, I'd try EGCg and Magnesium Threonate -- but it might help you recover your senses. The only thing off for me now is eggs, I'm super sensitive to the sulfur in them.
Even their comment about the impact of vaccines can be explained in this context:
> The vaccines are certainly helping. Before they became available, about one-third of everyone infected with the virus came down with long COVID, Koralnik says. “There is brand-new data showing that if you’ve been double vaccinated and boosted, then the risk of developing long COVID, if you get COVID, is probably more like 16, 17 percent
If your state of mind and anxiety about things are included as “long COVID” symptoms, it makes sense that the peace of mind offered to people who get vaccinated would put them in a better head space to not experience these symptoms regardless of how effective the vaccines are.
None of this means that it is impossible to have lingering COVID symptoms. Of course that can happen, but that can happen with any disease.
Correlation does not equal causation.
But if people who have tested positive experience these symptoms at a higher rate than people who haven’t, while both populations are exposed to mandates, inflation, etc., then it is reasonable to question whether mandates, inflation, etc. are the cause or the long-term effects of COVID.
> They ran an analysis of the first 509 COVID patients treated at Northwestern Memorial Hospital and, in a paper published later that year, reported that 42 percent of them experienced neurological symptoms upon contracting COVID, 63 percent upon being hospitalized, and 82 percent over the entire course of the disease.
From what I have seen, this is the same with the other long COVID studies I have seen as well as the other references in this article. Do you have an example of a study that compares long COVID symptoms of people who tested positive compared to people who never had COVID? I would be very interested in reading that.
Also, people who took tests in the first place are people who were more likely to feel stressed due to the existence of this disease than people who never did any test at all.
I not humbly disagree. I dont see how we could ever even begin to be a society if we allow mistrust & rejection of possibilities to be the primary shaper of our opinions & positions. The refusal to regard here is actively harmful.
> I read some of the “Long COVID” studies a while back, and they all included things like anxiety, depression, and mental state weeks or months after testing positive for COVID. Linking this to COVID is an example of bad science.
Yo, what? Excuse you? You're going to disregard people's reports & assessments, call it bad science, just throw up correlation does not equal causation qed & pretend like the job is done? People feel like shit, have incredibly fuzzy brain states for a while after covid. Even those who physically (aerobically) recover still doubt how healed their are, are anxious because the brain still feels behind. Maybe some of this anxiety you disregard is because they are never sure if they ever will really truly ever recover; this has felt like shit to me and Im never sure Im back to who I was before this ordeal. That seems widely reported, real to me & I'd expect some familiarity with thay from others. That feeling of brain fog is real, that worrying & anxiety is real although perhaps not directly entirely attributable, but a serious & clear & inarguable & concerning secondary effect that we frankly dont have a ton of good data to help people fully through. Even if we did have the data, people are still allowed to be afraid. Afraid of flying, afraid of escallators, afraid their bloody mind is scrambled & not really recovering like it should be.
Sorry comrade but science aint always so simple & clear & direct. Finding out can be hard. Just because the facts dont conveniently line up to make sometbing clear right away doesnt give you license to disresged, to ignore possibly real information. There's a word for argumentation that tries to make information in general less believed, less real: disinformation. Please dont border so close to being actively denialist of possoble validity.
No, it does not. It's just saying that anxiety and depression are completely normal reactions to the global pandemic crisis. If someone is claiming that "long" COVID is a thing, they need to have better evidence than "people are depressed and anxious".
The rest of your post is written in a confrontational attitude that I don't even want to read.
That's a shame. I felt the same way when I started reading your post, but I did finish it. That's how I know you'd benefit from reading a little further - they go on to explain what you're missing.
You forgot "mental state" in that list of things the person said were almost certainly not covid & shouldnt be believed or trusted as being a part of long covid.
> The rest of your post is written in a confrontational attitude that I don't even want to read.
The original @fsociety999 parent was "confrontational" against reports & beliefs that are widely reported & I dont want to read that disinformation & cruel hot take skepticism either. But I did & I responded, because it matters & even the bad, especially the bad, needs addressing. My post is far from perfect & saintly & I absolutely could do better, but this was actively disdainful posting making up preffered causes & excuses to disregard what seems like quite possibly real & evident meaning.
The GP was very dismissive - or at least cast FUD on the whole notion.
We are in this place where we are the best experts about our own body, yet at the same time that experience and knowledge is being cast doubt on because ... why exactly? Why is it so hard to take people seriously?
Other comments in here seem to be basically like "well you were fragile/brain weird before so whatever I guess".
Just remember, every person who is struggling after a bout of COVID and not feeling right... that is a person, that could be your friend, parent, sibling, loved one...
Ultimately the proper response imo is "that is really concerning and we should do more research" rather than "well this happens after every illness". Which is "true" but also not really true, simply because long covid is way more prevalent than lingering symptoms after EB, the flu, colds, etc.
I'm not surprised that people are more depressed and anxious after 2 years of no fun, no social interaction and being locked up in their homes.
Calling it "long COVID" is just another piece of disinformation trying to make COVID look bigger than what it is.
That's part of the problem. We don't have clear biomarkers, we don't have a clear definition what it is, we don't have agreement what symptoms exactly are included, and we aren't even fully aligned on what "long" means. (>4 weeks? >6 weeks? >3 months?)
Long COVID is really more of a syndrome, a rough grouping of symptoms rather that a specific condition. It's so vague and covers such a wide range of different symptoms as to be clinically useless.
Long Covid is ME/CFS re-branded. Some people / institutions muddy the water with other PASC organ damage but a real effort is being made to disambiguate it.
That said, it's always disappointing to see people push quackery like dietary fixes or claiming it's just a sociological thing. Especially the sociological angle because it isn't just limited to places like the US (where I presume people are pushing the theory for political reasons). It appears in places regardless if they did full on lockdowns or did a more light touch like in Sweden. It makes me think that nowadays people would claim Shingles is fake and made up and unrelated to Chicken Pox.
High quality disease research takes place over years and decades through hundreds to thousands of studies. We’re still looking for a cure for HIV, long COVID could be harder to treat. We have no idea.
1) Does Long Covid exist differentially relative to others who went through the pandemic?
2) Has the medical establishment been sweeping aside a whole host of genuine complaints of unspecified origin that are now landing under "Long Covid"?
What is becoming increasingly clear is that viruses suck worse than anybody thought, and we need to start paying attention to that.
It's taking out athletes, professional athletes, left and right.
There are multiple studies showing severe mitochondria dysfunction for months, years afterwards.
It's even identical to the years after the original SARS in 2003.
But yeah, must not be real because you read some papers.
I guess one person at a time has to experience it for themselves but then it's too late because there's no actual cure like ME-CFS, your life quality just sucks for whatever time you have left.
As syndromes become better understood, they can morph into a disease. For example, swollen lymph nodes in gay men was a syndrome in 1981, but as knowledge evolved, we came to know it as AIDS and then HIV.
So "long covid" is definitely a syndrome. Hopefully medical science will someday learn enough to know whether it is a disease or not.
https://edition.cnn.com/2022/08/30/health/oral-inhaled-stero...
https://bmjopen.bmj.com/content/12/8/e062446
This is also given to sufferers of asthma and hayfever.
Of course, that's purely anecdotal but it does hint that there must be something else happening.
With every new infection, more damage accumulates. Huge increases in heart disease, strokes, and risk of Long Covid. The answer is not to give up and just catch every variant, but to delay it as long as possible with reasonable measures like never eating indoor at a restaurant and wearing a NIOSH approved mask when you go out.
But do go on about "irrational fears."
- age, gender, weight, race
- country, state, city
- medical interventions attempted, vaccine status, etc
- prior medical history
- drugs taken on a daily basis
I have a sneaking suspicion there’s some key factors here. This isn’t unheard of for viruses, even the flu can cause “brain fog”.
There’s also a chance the spike protein can cause this. There’s a few discussions on it, but it’s one of the reasons people were concerned about potential side effects from the vaccines (which utilize the spike protein).
Funny enough, the later point was mentioned in the global planning scenario of a coronavirus outbreak in oct 2019. Page 59 discusses vaccine side effects causing neurological issues
https://jhsphcenterforhealthsecurity.s3.amazonaws.com/spars-...
> While the federal government appeared to have appropriately addressed concerns around the acute side effects of Corovax, the long-term, chronic effects of the vaccine were still largely unknown. Nearing the end of 2027, reports of new neurological symptoms began to emerge. After showing no adverse side effects for nearly a year, several vaccine recipients slowly began to experience symptoms such as blurry vision, headaches, and numbness in their extremities. Due to the small number of these cases, the significance of their association with Corovax was never determined.
I’m sure it’s unrelated, but interesting none-the-less.
Because it's not 2027 yet and people aren't newly discovering this and it's almost never from the vaccine but rather from the virus itself? In what way do you think it could be "related", like that they planned out the pandemic and published it? I'm assuming I've misunderstood this part of your comment.
It seems to be pretty uncommon in Europe and poorer the countries you go, it's almost as if there was causation between people taking antidepressants and visiting shrink and long COVID, especially combined with how much talked the "long COVID" is in MSM.
Lower availability of psychologists, drugs and long COVID coverage in MSM usally results in almost none long COVID cases.
The simplest explanation here is that there’s also no correlation between COVID and “Long Covid”
“ In an analysis of almost 55,000 adult participants in three ongoing studies, having depression, anxiety, worry, perceived stress, or loneliness early in the pandemic, before SARS-CoV-2 infection, was associated with a 50% increased risk for developing long COVID”
https://www.bu.edu/articles/2021/depression-rates-tripled-wh...
Read more carefully that isn't what the paper showed - it showed that those with previous psychological problems were 50% more likely to have long covid COMPARED to those that didn't have previous problems
I took advantage of a nearly 2-year paid "work from home" vacation, and did a lot of other things I probably would not have done otherwise, including joining a gym and getting myself in shape for the first time in my life, and making some new friends.
All of those symptoms seem like they could be stress induced to me at any rate. If you find any reviewed studies let me know.
I and many others don't doubt that Long Covid is real for some people, but the degree to which it's supposedly presenting (30% of infections claimed in this article) seems really odd without some kind of controlled study. I'd like to see something comparing Long Covid rates in people whose lives were minimally impacted by the pandemic (if such people exist - maybe in countries that didn't lock down?) to those whose lives were significantly impacted.
The effect is basically non-existent in people under age 55. And I'd love to see them do a follow-up study since the scans were done fairly soon after infection recovery whereas there's decent evidence that for some people full recovery might take many months.
If you think you know where the experts are at then please tell us so we can test your hypothesis.
Even a month later, I just don't feel like there's any real power in my body. Like if I'm walking and want to launch into a sprint, my legs simply don't feel like they have the power to do so.
I've also had brain fog where I forget things and mispronounce words and names.
Weird disease.
It's the hidden cause of most cancer, a major driver of the obesity epidemic, and is surely subtracting more years of life from more people than the covid pandemic ever did. I'm optimistic that we'll have the diagnostic criteria and awareness in the medical field in the future where we will be able to diagnose, measure, and treat chronic autoimmune inflammation rather than debating whether or not everybody's faking it.
Disclaimer: Some people are definitely faking it. I know it. You know it. Everybody knows it. I'm not disputing that. If we can start understanding it as chronic autoimmune inflammation, for which there can be solid diagnostic criteria, rather than as "long covid" or "chronic lyme disease" or whatever, we can separate the legitimately ill from the disability scammers.
Wow that sure takes a load off, time to relax and drink some inflammation increasing alcohol!
Also, do we trust these people to tell us the truth?
Like, a mild COVID is coupled with fear and isolation and media-bombs.
Could the weeks of mental stress cause a measurable affect (or effect?) for months after?