I'm 22 years old and suffer from Long COVID for 3 years now. I've written a bout my experience on my blog: https://tunn3l.pro. although not bedridden, my life got totally flipped upside down. I just want to live a normal live again. To all ME/CFS and LC sufferers: Don't give up!
Hi, I couldn't glean from the articles. But it sounds like you have breathing issues from long covid? it may sound ridiculous, but I developed gluten/lactose sensitivity during covid times. If I avoid gluten, lactose, canola oil I get far fewer symptoms. I know this likely isn't your issue but I do experience positive airway pressure, coughing, burping, chronic fatigue, exessive yawning. If that sounds like you maybe a dietary intolerance could be worth checking. For what it's worth, no doctors could diagnose me, they thought I had heartburn or "its in your head". It wasn't, cutting those things out did actually help enormously.
My wife and I got Covid during the first major wave (March/April 2020). I had no symptoms at all, but my wife ended up getting long Covid. GI issues, extreme tiredness, shortness of breath, brain fog, sleep disruption, etc etc. She lost maybe 10-12% of her body weight.
After maybe 8 months of this we somehow decided to do a low-Fodmap diet (I participated for support). That included cutting out gluten and dairy (except butter). She healed right up. When we were re-introducing foods, for whatever reason, mushrooms and garlic both had negative effects, and we ended up keeping both out of our diets for a couple years.
Anyway, that's all to say I'd recommend people seriously look at their diet and try to spend a month or two doing low-fodmap if they're chronically suffering from long Covid. Worst case it doesn't help.
Yet another anecdote, but my wife and I both got COVID. I was quite a bit sicker than she was.
I later found out that I'm a type II diabetic, and almost certainly was at the time I had COVID given the timing. I had fairly severe fatigue symptoms preceding that diagnosis, and the diet/exercise changes I made to bring that under control look a lot like what your wife did, and also seem to have alleviated the fatigue.
There was about a 12 month separation between recovering from COVID and my own fatigue symptoms. Had the timing been a bit different I likely would have assumed I was suffering from long COVID, and would probably have been less inclined to see a doctor as a result.
None of this is to suggest that any given person is suffering from diabetes, that long COVID should be treated the same way, or that any given person with long COVID is self diagnosing. For anyone that is though, definitely consider talking to a doctor. Coincidences happen and you could have something that is both unrelated and treatable going on.
Anecdotally I went through a severe bout of IBS-C in my early 20s and the "cure" was to cut out wheat and dairy for an extended period of time (about a year and a half), at which point I was able to reintroduce them into my diet and I've been ~fine for about 20 years now. I've hypothesized that the lining of my intestine(s) had been damaged by the proteins and/or starches/sugars in those foods and needed a break and time to heal. I'm not a medical professional and my hypothesis has never been confirmed by one.
I had a similar experience with dairy. (Wheat is still out.) It used to give me severe digestive symptoms and inflammation, but after cutting it out for a year or so, I've been able to reintroduce it without any noticeable symptoms. No GI I've seen has really had answers for me, and I'm not really interested in seeing an "alternative medicine" doctor, although I'm sure they would claim to know what's going on. But I'd recommend trying an elimination diet to anyone who has unexplainable symptoms in that vein. The limitations are annoying at first, but you get used to it.
It's pathogenic yeasts that really drive the whole thing, and milk inflames the immune response. The trick with COVID is to take melatonin during and after it. Gut health is a longer journey as leaky gut takes awhile to heal.
I really get the sentiment that if you look at people who are told "it's all in your head" and then they find some obscure condition that is treatable, it might be considered borderline malpractice for the physician to have told them that... but does the frequency with which patients are told that maybe give some insight into how many psychosomatic patients there really are out there?
I don't think so. I have literal objective tested allergies and people ask me if I think the symptoms (allergic rhinitis) are psychosomatic all the time. So many people I talk to have real symptoms and down play them as probably having some mental component.
I mean, we had actual doctors doing the "In your head" song and dance before my wife was diagnosed with RA for a good 3-4 months. There was visible swelling/blistering and she couldn't walk unassisted. This is an anecdote of course, but, this was a very obvious condition, and we got "in your head"ed.
Seems to me like that would be the number one offered advice when you get less than five minutes of time with a doctor under typical US doctor visits. Seems like a very convenient way to cycle patients through faster. The only downside is there's not really any scripts you can write which lowers your quota for which ever bigPharma the doctor has sold their soul
"it's in your head" diagnosis is when the medical establishment gives up and outsources the treatment to the patients themselves and that quite often does not end up well for the patient regardless of the true cause of the illness.
In my mind, that doesn't make the symptoms any less real to the person suffering from them and does absolutely nothing to remedy the situation. Even if it is in the person's head, any doctor offering that advice should be facing consequences for not offering a legitimate path for treatment.
My apologies if my comment sounded insensitive towards people who have real physical ailments, but there are cases where psychology may play a role and I firmly believe the medical system should take responsibility for those cases rather than shrugging them off and leaving the patient to figure it out on their own. First and foremost, they are leaving the patient suffering. Then there are other factors to consider, ranging from patients seeking out ineffective and unproven treatments for something that may not have a physiological basis to something having a physiological basis not being diagnosed because it was dismissed as having a psychological basis.
I'm not a medical professional, but as a firmware engineer I do bristle a bit at the suggestion that "hardware" and "software" problems can be so cleanly separated.
it's in my head but guess what? that's where I live! I didn't think my way into this particular problem and I can't think my way out this particular problem and I need external help to get back to normal.
> I developed gluten/lactose sensitivity during covid times
Same here, at least in regard to gluten. I was in my mid-forties, and I started experiencing painful bloating that often led to difficulty breathing, and after an hour or so of pain, vomiting. The involuntary 'protein spill' alleviated the pain of bloating, but I was left exhausted for the remainder of the day.
At first, these episodes occurred about once every 2 weeks, but they grew more and more common over a few months, until it was a nearly daily occurrence. I had become overweight (I'm still working on that), so my doctor concluded that I just needed to lose some body fat. It felt like there was something more serious more going on, but US health care.
Weeks later, I stumbled upon a science article describing how millions of people develop gluten sensitivity later in life. It described familiar symptoms and progression. As an experiment, I tried eliminating gluten from my diet (which is tricky, that stuff sneaks into surprising places), and I felt much better within a few days.
In the ~2 years since, I've had a few episodes, but I can almost always find a place where gluten snuck into my food (e.g., a taco place that added flour to its corn tortillas). On one occasion, I deliberately ate a bit of bread, and sure enough, 30 minutes later I was begging the porcelain gods for forgiveness.
I miss real bread, but for me, the blowback isn't worth it.
100%. it took me years to consider gluten/lactose as the root cause, because I'd been eating them for years and definitely never almost suffocated like the symptoms it causes now for me now.
It's a long shot, but my mild long covid symptoms practically disappeared since I've been taking MCT oil regularly. I was motivated to try it after reading this article: https://pubmed.ncbi.nlm.nih.gov/37415915/.
I only started taking mct oil a few weeks ago (but I felt the effects basically immediately). I've been using this product (I think it is a local hungarian brand) https://nordvital.hu/products/mct-olaj-500-ml , but I doubt that the effects are specific to this one.
I drink two cups of coffee a day (in the morning and after lunch), and I put a tablespoon of mct oil in each of them.
In the first few days I had minor diarrhea, probably it makes sense to introduce it more incrementally to avoid that.
I do not have full statistics, but people who smoke cigarettes are less prone for developing post-covid, according to the statistics I have.
My immediate thought back then was is that nicotine somehow plays the role of NAD (= B3 vitamin), thus fixing one of the core mechanisms of acquiring mitochondrial dysfunction after the covid (NAD deprivation).
This is interesting, (anecdotally) i have heard of people using nicotine patches for ADHD, and i've also (anecdotally) heard of ritalin etc being used to help people with CFG.
I know two people that are just now getting out of bed and able to do basic things, both diagnosed with Long COVID. Knew another that was sick for a year afterwards, and my brain can't hold info like it used to. It's ugly when it gets a hold of you, that's for sure.
For what it’s worth I had bad nerve pain from Covid and only thing that helped was weight lifting and a carnivore diet. I’d put more stock in the weight lifting though. I believe an increase in testosterone helped regulate my immune system. From what I understand women suffer more from auto immune diseases than men (at least it’s the case with MS) so maybe weight lifting is part of it.. good luck.
I have had the same issue for about as long and it's been a bear of a time to get anything done with it. Kudo's to you for taking a trip to have a treatment that might work done! It is very hard to take a lot of initiative and keep pushing (at least for me) with long covid.
My sister had ME/CFS after she had a burnout after her second kid. She was never permanently bed ridden but sometimes had to spend days resting or recovering after strain. She's not well today, but much better than at her worst. There wasn't really an accepted diagnose for it when my sister got it, and she had to fight to be recognised as sick.
I do wish Dianna the best recovery and future progress.
One of my dearest friends suffers from ME/CFS - she's been bed ridden for 3 years now. Any stimulation is just so painful her. Seeing Dianna actually able to get out of bed has brought a bit of hope back into my life
Check out Midwestern Doctor blog posts. Seems to turn every possible stone to get healthy results. Changed my thinking a lot https://www.midwesterndoctor.com/
Anecdote: Back in October '24 I got Covid. My only symptom that stuck around was lack of taste on my tongue (NOT Anosmia, it's lack of salty/sweet/sour/bitter response on the tongue itself), but only on the right half of my tongue. It slowly got better, but last week I lost taste on that side of my tongue again. The taste is coming back again now.
Anyway, I have no idea what's going on with me; it's not really severe enough to investigate further right now, and my case is only the tiniest part related to Dianna's.
Zinc is a critical cofactor for enzymes involved in the regeneration and function of taste receptor cells. These cells have a high turnover rate, and zinc deficiency can impair their renewal. Zinc supplementation is usually the first line of treatment in taste disturbances, especially when nerve damage is not suspect, and it's often effective. See, e.g.: https://www.sciencedirect.com/science/article/pii/S246854882...
It's possible that covid infection somehow disrupted zinc homeostasis. Taste receptor cells also express ACE2, which is what the virus tends to latch onto... I suppose a feasible mechanism -- or at least a hypothesis -- is that viral binding to ACE2 may have downregulated zinc-dependent signaling pathways (for e.g., those involving metallothioneins or zinc-finger transcription factors).
In circa 2022 I got covid and lost smell. First I couldn't smell the spices in the kitchen, but I thought nothing of it. But some days later, I couldn't smell WD-40. That's when I noticed I can't smell anything at all. My sense of smell never really recovered. After about a year, I could faintly smell menthol. Now I have to really try hard if I want to get some faint sense of smell, but a lot of time I just don't smell anything.
I completely lost taste and smell around 2022 too. It wasn't like a clogged nose, I could absolutely not sense anything with my tongue and nose (except for touch). I read stories about it not coming back for some people and it absolutely shook me. At that moment I realized how much I love delicious food and that smell is a great indicator for things you might not expect (e.g. heat).
It luckily fully came back in my case, but it took many months. But it was properly scary! So weird that a viral infection (that didn't even make me very sick) could have such long-lasting and potentially life-altering effects.
I got covid once back in the summer of '22. I had high fever (40C) for two days but my taste and smell were gone for an entire month. Losing two of my five senses for so long was something I never want to experience again.
Same. Lost both smell and taste for a few days after I got COVID in 2021. My taste came back quickly, but my sense of smell took longer to come back and is still probably about 50% diminished. I can't smell things from a distance, only up-close or if it's really strong. Like I can't tell if my house stinks because my garbage needs to be taken out, but I can smell it up close. I've just relegated myself to not being able to smell much anymore which I guess is better than some of the other Long COVID symptoms out there. I do miss smelling things though.
take a flashlight to your nostrils in a dark room with a mirror, are they inflamed? It could be reflux/silent reflux like I have, gases inflame the sinuses, then it's hard to breathe.
That's great to hear. I remember Simone Giertz breaking out the bad news to her followers and sounding no less serious than when she was talking about her own brain surgery.
My former co-worker got COVID twice, as preventive measures didn't fit into his moral framework, and the second time resulted in a mild case of long COVID. I'm saying "mild" as he was not bedridden, but the cognitive decline was noticeable.
Long COVID is no joke and seriously affect one's work as well private life.
>I'm saying "mild" as he was not bedridden, but the cognitive decline was noticeable.
I've noticed some of that with family members that have gotten covid, but it's hard to say that it's definitely that as they are older and age related decline is hard to nail down too.
Yeah cause people actually follow the rules. I was back in NZ from December 19 to like end of January 2020 and sw covid becoming a thing, back thru Bangkok and everyone's masked up, then to the UK again where people hadn't even heard anything about it ha ha. That was the times of the eerily orange daytime sky because of the Aussie fires.
Lockdown here everyone and their Mum is screwing around at the park, UK does not really have an attitude of social good imo, outside of one's own family.
The entire problem with victim blaming is that "do it to yourself" is a sliding scale and it's hard to know where to properly draw the line.
I think most of us would probably agree that getting covid while doing nothing to protect yourself makes one less sympathetic than many other victims, but I firmly disagree with this sweeping statement about victim blaming in general.
There are people literally claiming masks and vaccines are against their religion. That's not victim blaming, it's stating a fact. It's the same as saying Joe got hurt in a car crash and wasn't wearing a seatbelt.
Like I said, I'm not saying that this was victim blaming, I'm only protesting against this explanation for why it's not:
> It's not really victim blaming if you do it to yourself.
"They did it to themselves" is always the structure of a victim blaming exercise. That doesn't mean that every time someone says "they did it to themselves" it's victim blaming, but you have to actually demonstrate why it's true in this case that the victim did it to themselves.
For example, to add some nuance to your car crash example: if Joe died in a car crash and wasn't wearing his seatbelt, it would obviously not be victim blaming if he were drunk and spun out of control. It probably would be victim blaming if he were hit by a drunk and happened to also not be wearing his seatbelt. Yes, he should have been wearing a seatbelt, but the context makes him a victim regardless, and it would be inappropriate to say "he did it to himself", even if it might have been appropriate in the case where he was also the drunk.
Lots of people are careful while crossing the street, yet some of those careful people still get hit by cars. That doesn't mean that you stop being careful while crossing the street.
As for the whole mask debate. I'm not sure how effective they were ate preventing people from catching COVID. After all, most people wore masks that were poorly fitting. I am fairly confident that it cut down on the amount of airborne COVID, or at least reduced exposure in face-to-face interactions. Unfortunately, most people only seemed to be concerned about the selfish angle and few people seemed to be concerned about the selfless angle.
If you're hit by a car, there is another party to the incident whose responsibility to avoid hitting people is at play. It is generally understood that a driver has a greater duty to avoid hitting people than people do to avoid getting hit. To wit, people have a right to not be hit by cars. It is a crime or wrongful act.
Victim Blaming is a logical fallacy in which the responsibility for an incident is misattributed, sloughing blame from the more-responsible party to the less-responsible party.
Catching a disease is not like being hit by a car, even by accident, because there is not a legal obligation to avoid infecting other people if you have a disease. If you catch covid, no crime has been committed.
In fact, the presumption of duty is often reversed, except in exceptionally malicious circumstances. The responsibility for being accidentally infected usually lies with the one who failed to avoid it. Although, it is not unthinkable to expect people to have a legal duty to avoid infecting others, say, by wearing a mask...
But if a person denies that idea, they can't at the same time claim it's not their responsibility that they got sick.
Masks, gloves, and frequent hand washing with soap and warm water have been proven to work for both COVID and other viral diseases and this has been settled science for a long, long, time.
Of course your definition of "proven to work" may mean "works 100% of the time with no exceptions" and that is an impossible bar to meet.
My, and many others', definition of "proven to work" is "reduces the rate of spread to the point that pandemics are impossible once an outbreak has been detected".
I've been a volunteer EMT for over 20 years and have interacted with many patients. In the mid-2000s after a particularly nasty bout of gastroenteritis I became the PPE (personal protective equipment) and hygiene tyrant.
Despite handling so many COVID patients it is impossible to even begin counting them, I have never tested positive for COVID and during the height of the pandemic I was being tested weekly (I was both a critical defense worker who needed a passed test to work in person AND a public health worker).
edit: that DOES NOT mean that PPE is 100% effective, it means that PPE in plus my hyper-anal stance on hygiene PLUS good old fashioned random chance favored me.
Even today I will don a mask prior to interacting with a patient if dispatch tells me there are respiratory issues and will put one on the second I hear a cough.
Between PPE and vaccines I can count the number of times I have been sick since 2020 on zero fingers.
> Masks, gloves, and frequent hand washing with soap and warm water have been proven to work for both COVID and other viral diseases and this has been settled science for a long, long, time.
Before COVID times people didn't even do the most basic of measures like staying home while sick, regular hand washing, sneezing into elbows instead of the air or their hands, etc. Once COVID happened and the media told them that they had to everybody became hyper-vigilant about preventative measures. Now that it's been a few years since the height of the pandemic people are back to being out and about with little consideration for how their actions affect others. People go out sick, nobody's getting seasonal vaccines, nobody cares (of course I'm being slightly hyperbolic and n=1 in my anecdata).
I shouldn't be surprised but it is a bit disheartening to be sitting next to somebody at a bar or restaurant and hear them say "oh I'm kind of sick right now" :-/
Intramuscular vaccinations do not significantly prevent infection of the upper respiratory immune compartment (mucosal IgA antibodies, not humoral covered by IgG). The efficiency against infection by sars-cov-2 is about 20%. That means 80% get infected.
Now, the intramuscular injection vaccines do provide tissue resident B (+IgG antibodies) and T cells in the body serum (humoral, not mucosal) immune compartment and this has been proven to prevent serious (hospitalization) by covid-19 with decent (>50%) efficiency. These IgG antibodies do not seep into the upper respiratory (mucosal compartment) and provide protection there though; only the lower lungs.
But infection? The only good mitigation, lacking a proper intranasal vaccine like India has, is wearing a well fit and sealed mask like an N95 with good practices.
I'm not OP, but in my case the answer is the same as flu - it's likely to be a routine annual thing. Eventually it'll probably be part of the flu shot.
It's interesting to me how COVID vaccine skepticism has persisted so long despite the evidence the vaccine was safe and effective.
All the nightmare scenarios and long-term side effects people speculated about never happened and more and more doses of the vaccine have been taken safely.
Regular vaccine skepticism has persisted for far longer, even after one of the cornerstones was exposed as outright fraud. We’ve got a “vaccines cause autism” nut in the Capitol right now about to be put in charge of the government’s health services. Covid vaccine hesitancy is nothing by comparison.
Sure. mRNA vaccines didn't emerge spontaneously during covid. They were studied for many years before, which is why they were so readily available for covid. Just because you never heard of their existence prior to covid doesn't mean they weren't the subject of intense study. The first mRNA vaccines were tested on mice in the 1990s, and on humans in 2013.
I'm still waiting to become magnetic! That and I want to shed spike proteins like a Pokemon.
"Do you have 5 years or more of evidence about this thing that has existed for less than that time?"
Obviously this is not a good faith question.
And yes, we may find out that the vaccines are, over a long period of time, not perfectly safe. But we do have enough data to know they aren't super risky (at least for the vast majority), because big effects would be easy to see, and we do know that COVID is very risky. Classic economic thinking question: "compared to what?"
Do you need big negative effects to outweigh the pros of another booster? If you take an under 40 healthy person who already had covid, the vaccine did basically nothing for them after a few months. It doesnt take a "big effect" to counter that, right?
Depends on a bunch of factors, e.g. which booster, which variant, the person, and the relationship between dependent and independent variables in different risks from both COVID and the vaccine, but for the peak of the pandemic, the answer is no -- the risk of catching COVID was so large and our treatment wasn't honed in that you'd have to assume a pretty high rate of serious unknown long-term issues for it to come out net negative in most cases. Once we got past the peak and with particular variants where the boosters were less effective, that changed (and that was also when you found out that some people's belief in the vaccine was ultimately religious in nature).
There weren't a lot of people trying to model that risk, but of the ones who were the vaccine looked pretty compelling as a better bet for the whole of the peak pandemic. And maybe it turns out that 15 years out from the vaccine everyone suddenly dies! But the expected value there is highly unlikely.
Most people are fully aware that any vaccine can, in rare cases, cause all kinds of problems. I haven't seen many instances of people acting like that isn't the case. The internet is a big place, and I don't doubt that you've felt silenced, but from what I've seen people are largely sympathetic to those who have experienced problems with the vaccines and are often quick to point out the fact that some percentage of the population not being able to take vaccines is exactly why it's so important that those who can take them get them.
The folks I have seen shut down tend to be the ones who say that the vaccine did things like turning them "magnetic" or say that everyone should avoid the vaccine because the risks of the vaccine outweigh the risks of the disease. I guess I'm glad I'm not hanging out in places where people will attack or silence someone for trying to protect themself and others and being unlucky enough to have a bad reaction from it.
A close family member has permanent heart failure caused by the first Covid booster.
They now go to the top heart hospital in the world.
The doctors there say that while nothing can be proven for certain - obviously - the timing of their booster and the onset of their heart symptoms and the fact that there was no indication they had Covid at the time all point to the high probability it was the vaccine.
And they’ve seen this in other patients.
The scary thing is that this person had symptoms of heart failure for months before going to the ER and if they hadn’t, would have probably just died in their sleep long after getting the shot and it would have been a mystery, chalked up to bad luck and age.
Ironically, their current status with heart failure puts them in a high risk group and the recommendation is that they keep getting Covid boosters. The logic here is that the chances of getting another bad reaction from the vaccine is overruled by the chances they’d die from severe Covid.
It’s not as cut and dry as people on either side of this debate want to make it.
Doctors are as susceptible as anyone to all the cognitive biases that result in post hoc ergo propter hoc. I wouldn’t assume they’re correct about the cause just because of the timing and the fact that they’re doctors.
Well no, the idea is just that, like most vaccines, the bad side effects are very uncommon.
The other side is saying that there’s this silent epidemic of terrible side effects hitting a ton of people, but it’s all anecdotal.
You say “anything is possible” like having heart failure due to other causes is some absurdly rare thing. It happens. The odds of this happening by coincidence are not that low.
If there are a ton of people getting heart failure from Covid vaccines, it should show up in the data. Has it?
Side effects can be uncommon while also passing our prior extremely low thresholds for acceptable vaccine safety. That might change the recommendation about who should get it or how often.
Cardiovascular deaths have increased since Covid. Makes sense, because Covid causes heart damage. The vaccine also produces the thing that causes the heart damage - the spike protein - so there's at least a mechanism at play for the vaccine to cause similar looking damage.
And while mRNA vaccines have been tested for decades, the Covid vaccine was only "tested" during the pandemic because we created it on the spot. At this point over 70% of the US population has had both Covid and the vaccine. So if someone drops dead from viral heart disease, there's no way to know if it was from one or the other. We don't have pre-pandemic trials of this vaccine to compare to.
> You say “anything is possible” like having heart failure due to other causes is some absurdly rare thing.
Viral heart damage is rare.
Additionally, in my personal case, the symptoms of heart damage were present for nearly two months before a diagnosis. Early concerns about the vaccine were dismissed by pointing out that side effects from vaccines present very soon - hours, days - after administering. But it's entirely possible to get viral heart damage, not notice it, and chug along for quite a while before it kills you, if it ever does.
All I'm saying is that there seems to be a clear mechanism for the vaccine to cause heart damage, and that I'm not convinced that we can even really know the true rate of damage caused by the vaccine because most people have both been infected with Covid and received the vaccine.
I'm not making any claims about the magnitude, but I don't think it's anything crazy like I dunno, that half of everyone gets heart damage from the shot. But I wouldn't be surprised if it's just high enough that it changes the calculus for people who aren't in a high risk group.
I want to be clear that I think mRNA vaccines are revolutionary and a good thing.
But it also seems like there's more room for catastrophic error because you're no longer just injecting a static dose of dead material. I'm sure we'll also see multiple versions of future vaccines tailored to genetic variations in the population, things like that. For example, maybe some people produce way more spike protein than others from the shot? Maybe that's a small group so it doesn't present in routine testing?
It just seems like we're in the early stages of being able to administer these things as safely as we're used to. Maybe we got lucky with this one. Who knows.
(Some of my questions might have answers and I'm just not aware of them.)
Not OP, but I still wear a mask on planes, wash my hands more often and more thoroughly, avoid touching my eyes, use more air filters, and don't share foods with my kids.
Same! Prior to the pandemic I almost always got sick post flight. I now wear a mask and take better precautions and all that and haven't been sick after being a lot more cautious about it. Frankly, worth it for me as I'd often end up miserable for weeks after a trip. Minor inconvenience of wearing a mask and being more aware of what I'm doing results in far less pain later.
And while kids often end up with just headache and slight fever that goes away after a day - adults end with at least proper flu (e.g. higher fever, joints/muscle pain ...) for a week or two.
The tragedy isn’t that we don’t wear masks routinely, it’s that people think they have a right to infect anyone because of their own sense of personal freedom.
Immediately when restrictions ended here, you could be in a large department store or supermarket and hear people coughing badly, or sneezing. If you know you feel under the weather, pop on a mask. But no, “freedom”, “it’s a conspiracy”. I swear “freedom” is just short hand for “I’m an asshole”.
I don't get it. People just hop on public transit and will be coughing every ten seconds. It is a pleasant surprise if they even go as far as coughing into their elbow.
This was always true before covid. Some of us reset our expectations during covid to expect people to be better than before, but many of us apparently didn't, which shouldn't be entirely surprising. It takes a long time to totally change a culture, and a lot of people were very happy to revert to the way things were before.
Reverting back to the way things were when life was simpler doesn't make them bad people, it just makes them human.
I’ve had long covid for a couple of years now. It’s a really difficult disease, in part because different people react very differently, and there may even be multiple mechanisms so it’s not exactly a single disease.
What has really helped me has been wearing a nicotine patch occasionally. I was never a smoker, but I came across this very small study [1] and thought it was worth a go because a) I was getting desperate and b) nicotine in such low doses is not that risky (7mg patch, worn for 2 weeks).
I know there’s counter-studies suggesting nicotine doesn’t help with resistance. My experience is anecdotal, but I saw rapid improvement in cognition and fatigue level (particularly post-exercise). My guess is that for some people the particular mechanism behind their long covid is one that this can help with, but not for everyone.
That nicotine patches help with focus is no surprise if you have been naive to nicotine before. I have been using patches on and off (like years of no usage in-between) for focus, and 7mg is actually a lot. Is there anything indicating that it is not just the effect of nicotine, and truly helps against whatever lingers inside your body (the spike protein)?
Given other people around me talking about treating their long covid with nicotine since it went through social media last year, I suppose you don't know about / didn't try the Natto (nattokinase) [1] / NAC route [2] (for which there were early studies showing they can dissolve the SARS-Cov2 spike protein)..? Or does the community consider that a dead end by now?
That there is a political echo chamber-driven division between those routes is a bit strange and dangerous, isn't it. With nicotine you will need to be careful about its effects on blood pressure, and it would be better to not even think about vaping (some of the flavoured products could be equally/more addictive to/than cigarettes [3]).
7mg was the weakest patch I could get at a pharmacy (in the UK), and as I understand it that’s the release over 24 hours; I wore them only during the day so it’s a lower dose. If it’s proportional it’s ~5mg, which is 2-3 cigarettes, but cigarettes deliver it much faster, I believe. I have since spoken to a doctor who suggested that if I relapse I should cut them in half to lower the dose. Did you do something like that?
The main reasons I think it had more than just a concentration-enhancing effect are a) the effect after 2 weeks of patches seems to be long-lasting (months, at least) and b) my post-exertional fatigue, which was fairly severe (going for a light jog would leave me partially bedridden for a couple of days) has also gone. But to be fair, if the fatigue is caused by nervous system dysregulation then perhaps that somehow accounts for it, and it’s equally possible both these effects will wear off in time.
I have not seen nattokinase mentioned before, thanks. Interesting that, aside from the effect on the spike protein, it’s also supposed to help prevent blood clots. A friend with long covid was enrolled in a study which treated micro blood clots and she saw significant improvement from that. But I was tested a couple of times for micro blood clots and it came back negative, so again I think the long covid mechanism is not consistent.
I've always bought the flat matrix patches so I could cut them into pieces — worked well for keeping things in limits. If it works for you this is good to hear of course – I wanted to share my2c of skepticism since for above reasons I was suspicious about the hype around it. Btw, if you google a bit deeper you will find a 2020 trial on clinical personell wearing the patches since there were signs it reduces covid infections, so there were early signs that nicotine might help.
As for nattokinase, I'd recommend looking around for diverse real-life experiences (I believe actual studies on long-COVID patients are still lacking). I'm not up to date, but I remember many people went straight for (Amazon-sourced) nattokinase supplements, and for some, it was too much and it made them feel ill.
Otherwise (not sure whether this would deliver the therapeutic dose you might need) natto itself makes a good breakfast — traditionally on rice with a runny egg, but it works as beans on toast too. Good Asian markets carry it in their freezers, imported directly from Japan (buy the versions with soy sauce / mustard). I had it regularly while I was over there, and there’s no difference in taste or effect (comparable to a small dose of aspirin). To the best of my knowledge, deep freezing isn’t an issue with the ingredients.
I think skepticism is really sensible with all of this – if there’s multiple mechanisms and confounding factors this is all going to take a lot more study to tease out. I was skeptical myself, but tried it because the downside risk didn’t seem too high, and I’m very grateful that it worked so well for me personally.
That’s cool – I’ll definitely try adding some natto to my diet!
This is such great news! The best news of my day. She is standing in a brightly lit room and smiling! This is so much better than her condition before.
I would say we don't really know if it's so called Long COVID. I mean that I have taken care of an ME/CFS sufferer long before COVID was around. So it's a set of diseases grouped by their similar symptoms. Autism and ADHD seem similar in that regard
Weird gatekeeping but ok; COVID causes chronic fatigue syndrome in some people. Because so many were affected (millions worldwide), it got its own nickname. ME/CFS developed after a covid infection.
Modern understanding of autism / ADHD sees the two as part of a spectrum of neurodiverse conditions (think of an audio mixer of many different traits, more than a side-to-side slider), but I don't see the connection with ME/CFS, whether or not it's caused by a covid infection.
> Weird gatekeeping but ok; COVID causes chronic fatigue syndrome in some people. Because so many were affected (millions worldwide), it got its own nickname. ME/CFS developed after a covid infection.
ME/CFS has been around for way longer - prior to Covid, the Epstein-Barr virus was strongly suspected to be a trigger for it. Unfortunately ME/CFS was (and in many cases still isn't) widely known among doctors, so diagnoses were hard to come by and treatment even harder.
At least now that there is money flowing into ME/CFS research and knowledge about it gets more widespread, "old time" ME/CFS sufferers have a perspective now...
The "so called Long COVID" really just means "I got covid and I remain unwell in some way, long term". I'm not sure it needs to be questioned if those two qualifying things are given. Very well might be the same thing as ME/CFS, or might not, I don't think we have a conclusive answer yet about what causes either.
"Long COVID" encompasses several very distinct nosological categories, which makes it a difficult term to talk about. There are at least four distinct subtypes - people who had severe acute illness and suffered respiratory injury, people who had severe acute illness and suffered cardiovascular or renal injury, people who had a relatively mild acute illness but developed long-term neurological or musculoskeletal sequelae, and people who developed those latter symptoms during the COVID pandemic without actually being infected with COVID. All of those types of suffering are very real, but may have very different causes and require different treatments.
> The final study population comprised 341 participants (90.6% females) who completed blood sampling and answered the questionnaire. A total of 232 (68%) were seropositive
How does this compare to the base rate in a similar population? Two thirds sounds like a reasonable estimate for "ever had COVID" in Denmark in 2022, though maybe a smaller percentage would in fact be seropositive. It would be interesting if self-reported long COVID had little or no correlation with having had COVID at all.
note that this is 'self reported long covid'. For a proper study you'd need an objective measure otherwise it can't be determined what might be long covid vs. fatigue from working late hours at work, changes in mood due to season, changes due to age etc.
Probably but that doesn't stop people from selectively reading or twisting the Bible to serve their own ends, bringing the weight of God behind their own desires and goals. They know most believers never actually read their own holy book on their own much less with a critical eye to how well it matches what they're being told.
Reading utopic rulebooks - the intent is of no value. What is of value, is the reproduceable outcome of the rule-book interacting with actual humans, not idealized or demonized concepts.
It's not that it sucks to have this brought up, it's that the people who do are pretty consistently dismissive and infantilising about it. Naturally, folks that this happens to develop an aversion to people that say the same thing for the millionth time. It's not novel, it's not interesting (in that it never leads anywhere novel either) and it's frequently hostile.
If anything I feel like it’s actually more interesting if it’s a psychiatric condition.
Does someone’s visceral sense of having control of their own life being detonated have an impact on their body? Probably? What if they have been conditioned to act like they are not bothered by this aspect of the situation, and therefore don’t process this feeling and it remains unresolved. That is like the definition of trauma.
Eh, the advantage of "long Covid" is that syndromes are clusters of symptoms without a known underlying cause. "Long Covid" may give ME/CFS symptoms, but if you solicit 100 Long Covid sufferers for a study, you are more likely to be able to find underlying similarities than for 100 ME/CFS suffers.
The results would potentially scale to some sunset of ME/CFS suffers neho never had Covid, but it makes sense to start with the group we at least have a common starting point on the cause.
That's what I am wondering, is it the right cluster?
Some long covid symptoms are nothing like ME/CFS such as a persistant loss of taste and smell. And there are people with ME/CFS who never had covid.
Anyways, I am sure that research goes both way, that is, studying the consequences of covid and the causes of ME/CFS. "meet in the middle" can be a good exploration strategy.
I think the point being made was diseases can be difficult to diagnose. Some diseases don’t have explicit tests.
ADHD is diagnosed by looking at just symptoms if I remember correctly. I’m not sure about autism.
I knew someone who became sick. At first it was thought to be Lyme, it took a long while to determine and a bunch of other theories to determine it was lupus. Tests were not fully accurate and these illnesses manifest a little differently in different people.
Autism diagnosis requires (or at least should, for it to be done properly) a multidisciplinary evaluation.
In the case of my children, there were certain tests that were absolutely definitive, and not reliant on interpretation - namely, idioms and metaphors. It's raining cats and dogs, for example.
Right, but that specific sign still doesn't give definitive info about all the other aspects of autism. Ignoring the name you give "literal-lnaguahe syndrome" , it is unknown if the menu of signs and symptoms is diagnostically clustered in imto one label in an effective way.
I am not objecting to the general point that diseases are hard to diagnose. The wording OP used does not just say that - phrases like "so-called" come with an implication that the thing being referred to is just made up. That's why my comment asks if they would say the same thing about ADHD and Autism. They probably wouldn't, because it would carry an implication that they thought ADHD and Autism were somehow "fake".
ADHD and Autism are interesting, because they are entirely based on certain clinical presentations and the opinion of the diagnosing practitioner. There are a certain set of traits that are "classically" ADHD for example, so what happens if you show 80% of those traits and show the counter-case for 20% of the traits? I expect that neurodivergence is going to become far more nuanced in its assessment, with a better understanding of an individual's whole psychological profile.
In the Cincinnati area they throw up their hands if you are over the age of 12 and suspect ADHD. There is little to no help if you are an adult or close to it.
You can literally see ADHD in a brain scan, especially if you contrast it with after someone has taken the proper medication for it. This isn't some sort of witchcraft, it's a physical thing that's measurable.
That's not how you get diagnosed however, nor do I know if you would receive a diagnosis of adhd when a brain scan shows behavior similar to that of ADHD but you show no symptoms and aren't seeking a diagnosis. If you go in for an ADHD evaluation you typically get a psychological assessment, potentially do some tests which aren't always conclusive and your symptoms will be evaluated. In that sense, it's not really measurable in the same way that we can test for a specific disease, infection or virus.
It's not a strict relationship as far as I understand though. As in, frontal lobe issues are visible on many brain scans, but those brain scans are not specific enough to map onto ADHD diagnosis. So we don't have a good diagnostic test right now even though we have many population-level confirmed differences that we can run tests and statistics on.
In some cases we don't really know if your kid has autism. Under the DSM-5 criteria there are three levels of autism spectrum disorder: 1, 2, 3. Down at the less severe end of the spectrum, clinicians often assign different diagnoses. One psychiatrist might diagnose a patient with ASD Level 1, and then the next day a different psychiatrist might say that the same patient doesn't have ASD at all and actually suffers from ADHD or something else. It's highly subjective and reproducibility is low.
I mention elsewhere that I am not objecting to the general point that diseases are hard to diagnose. The wording OP used does not just say that - phrases like "so-called" come with an implication that the thing being referred to is just made up. That's why my comment asks if they would say the same thing about ADHD and Autism. They probably wouldn't, because it would carry an implication that they thought ADHD and Autism were somehow "fake".
I find it interesting that she's both kept her Patreon up during this time and has also become far more successful https://graphtreon.com/creator/physicsgirl, in spite of posting no content.
So patreon essentially acts as a health insurance and long term disability plan? I am unsure of “estimate earnings per month” accuracy given the wide range — “12K-147K” — but even at the low end that should be enough to get constantly seek treatments (traditional and non-orthodox) and still provide for basic necessities (food, rent, bills, …). American health system is a joke.
Glad she’s making progress and has a very supportive partner. Not sure what he does for a living but seems like he has been the primary care giver throughout this.
I don't disagree, but having some kind of medical situation isn't a prerequisite for gaming the Patreon system. I used to be a monthly patreon subscriber to someone years ago who put out weekly asmr videos. One day they just stopped cold turkey with no announcement, yet years later their Patreon is still up and still taking monthly donations.
Patreon fundamentally is a way to support your favorite artist.Be a PATRON of the arts. Some(most?) creators use it as an ad-hoc subscription method but it really isn't what Patreon is fundamentally built for.
if you're complaining about subscriptions that go into perpetuity your first target should be app stores that set up 10 year recurring payments in the biggest chunk possible for something you'll probably use for a couple of months before forgetting about.
Why is that shocking? Her existing subscribers continued to support her, but also multiple other famous youtubers talked about her which got her new attention/subscribers. I've seen at least 3 other channels giving her a dedicated video and YouTube is still serving me her shorts.
Is it really a grift if the person is upfront about asking for money to pay their medical bills and there's no expectation of a product that isn't being delivered? GoFundMe isn't pretending that there's a laptop or shoes or something expensive and then not delivering aka a scam, it's straightforwardsly asking for money to pay for medical bills.
For the sake of society, let's hope it's "let's figure out how to defend against viruses soon" and not "let's figure out how to make more fun gain-of-function viruses!"
I have been burnt out for almost three years now, was mostly bedridden at first but I can do much more now.
I can do moderate training 1-2 times a week, go out to get socialization 1-2 times a week and do much more at home.
So it have gotten better, just a very slow pace and it's really hard.
You have to learn to know when you have to rest and when to push yourself and that line can be super thin.
Not good to do too much and not too little, very hard to read signals imo.
Hopefully we will see more breakthrough in understanding and reading the signals of the body in the future
Yes, Wikipedia: In July 2022, Cowern reported that she had developed long COVID. She was hospitalized in March 2023, as her symptoms similar to myalgic encephalomyelitis/chronic fatigue syndrome continued to worsen, leaving her unable to move
I'm seeing the abbreviation ME/CFS in a lot of comments and didn't know what it means, but... I'll take the abbreviation over "myalgic encephalomyelitis"!
The state of all things Me/CFS is so bad. I remember reading about cases as a child in some boulevard or women’s magazine at my grandmas house, so it must have been about 25 years ago. Seemingly nothing happened since then.
Even the explosion of cases after Covid hit somehow doesn’t lead to change. In Germany many doctors still don’t know it, a lot of them think it’s psychological.
There is some research, but it looks like the study of the promising compound „BC007“ got botched by bad study design, so even after some very promising results in some participants it is likely to get scrapped.
„Hidden disease“ fits it so well, because the people affected „just disappear“, too weak advocating for themselves and with potentially every activity leading to a crash.
I’ve had a family member (Aunt) who’s been diagnosed with CFS since the early 90s whos now in their 60s
There is some good research into anti-virals for treatment. And this has been known for at least a decade. A challenge js few doctors will prescribe the course.
Anecdotally in the late 00s early 10s my Aunt was losing mobility due to CFS causing neurodegeneration. It was at the point she would sometimes crawl rather than walk up a flight of stairs.
Her and I flew to a specialist to get prescribed a cocktail of anti virals (most used for AIDS) and the results were more than a placebo.
Within a year the degeneration didn’t just stop but reversed. Its not a cure for her but it allowed her to reverse enough to have a high quality of life and mobility. Over time she’s progressed back down but who's to say if thats age or condition.
Here’s a link that discusses it, but a search for cfs and antiviruals will return cfs community material and journals.
no worse feeling in the world than hearing a doctor confidently tell you that it's all in your head and that you're wasting their time. Ask me how I know..
it's wild to me, because ME/CFS can, in rare cases, be terminal. autopsy reveals various findings: inflammation of the dorsal root ganglion, degeneration of the frontal lobe, metabolic issues and tangles of proteins in neurons and glia.
RIP to the author of "The Sleepy Girl's Guide to SSDI", who died young to ME/CFS, attributed to neuroinflammation in her autopsy.
Nocebos, the opposite of placebos, are extremely interesting. [1] The thing most people don't appreciate about placebos (and nocebos) is that the effect isn't just 'in your head.' It actually physically manifests - people can e.g. recover from illnesses measurably more quickly with placebos.
And the opposite is true of nocebos. So for instance one of the most common examples of nocebos is somebody will be given a terminal cancer diagnosis but then die long before the cancer could have been the cause of their death. They're so convinced that they're dying imminently that it becomes a self fulfilling prophecy. I expect a similar phenomena is why elderly couples tend to follow each other into the grave in short order. Dying of heart break or loneliness is not necessarily just rhetorical.
if only we could objectively (and easily) measure pain and energy levels (feeling tired) and even stress. stress is used here as a dismissal (not by you but the hypothetical doctor you are parodying) but stress too is a real health factor that people need help with.
Nobel Laureate Barry Marshall (co discoverer of Helicobacter Pylori, cause of stomach ulcers) gave a talk to a graduating class at the university he went to (can't find link, but it's on the net somewhere). He talks about "stress" being a fertile area of research for medical advances. His argument is that stress is rarely the direct cause of anything. It might be a secondary cause, or it might be a symptom, but research into ailments currently attributed to "stress" is a really good direction for the aspiring young medical research scientists out there.
Yeah, sorry, that wasn't meant to be dismissive of stress or burnout. There's probably a reason doctors always ask about it, but it can be an annoying to have to talk about your job when you've got physical symptoms.
(As a sidenote, why do doctors always assume stress is work related? Work is fine, but have you looked at the world...)
that wasn't meant to be dismissive of stress or burnout
just to be clear, i knew it wasn't.
why do doctors always assume stress is work related? Work is fine, but have you looked at the world
oh absolutely so much. i hide in my work when i have stress at home. i can think of two factors. as far as the world is going, most people don't care enough about it to let that stress them, so they do't even see it. myself i avoid stress from world affairs by actively working on making things better (within my means, by showing my friends and neighbors that there is hope yet for the future). but there is also stress at home, and that seems to be also overlooked. i think the reason here is that the doctors are not trained to deal with that and also don't want you to come to them to handle your family problems. there are other trained professionals for that. though personally it would really be nice if we had a family doctor who not only deals with physical but also mental health.
I agree with this, as a monist. Unfortunately medicine is still very much in its infancy in this regard - many things are too subtle or just still hidden.
It seems no doctor takes it seriously still: just you being a whiner and get over it. My mother had it in the 80s and it was really not a thing; must see a shrink, she did, didn't help of course etc etc. Never got any help besides 'well, just rest and don't worry too much'.
I am in the process of recovering from CFS (currently back to working 100%, though still not being where I want to be with everything else) and at no point my doctor has done anything but take it seriously. Of course, a doctor can only do so much with a disease as nebulous as this, but he (as well as work, family and other people around me) giving me breathing space and adapting to my situation has been crucial for my improvement, I'm pretty sure.
It is, in general, a poorly understood disease (as lots of others in the thread are pointing out). And everybody's case is different.
I will point out that I've never gotten so much unsolicited low-quality advice before, though; people who barely know me will make a very confident diagnosis on-the-spot once they hear I've got a long-term illness. E.g., “you're vitamin D deficient” (no, I'm not, and anyways, I've been taking vitamin D supplements for three months just in case, with no effect). I'm sure they mean well, but it becomes tiring really fast when everyone does it. (There's a select few people who seem to be much more careful about throwing our random crap like that, including, unsurprisingly, all the doctors I know.)
I think it has more to do with the doctor thinking about the absolute nightmare they are going to have to deal with interfacing with insurance companies trying to treat you. The dismissal is just their self preservation.
I have noticed that a lot of their job is playing insurance games to treat (get past preauthorizations) easily documented health issues, let alone things like ME/CFS or long COVID.
That’s a US-specific problem. Doctors dismiss patients’ complaints all the time in countries with universal healthcare.
I think the issue is much simpler than that: if the doctor is out of ideas (and doesn’t know of a specialist to refer to) they just get frustrated and give up.
Since it hasn't been mentioned yet, I had two debilitating flare ups of EBV (Epstein Barr Virus) post covid. It's commonly latent (apparently 90% of humans carry it) and will opportunistically flare up when the immune system is compromised. It commonly causes mono in teenagers, but more generally will cause crushing fatigue and related symptoms. There are no known cures, but plenty of things you can do to support the immune system. It can be detected with a blood test. If you think you have long covid, get an EBV test - might help.
my heart skipped a beat reading her name, thought something untoward happened but good to see she is back on her feet, literally. I donated a couple of bucks when that video of her illness came out. Very happy to see she is better now.
Long Covid (probably a form of ME/CFS triggered by Covid) is one of the worse diseases one can get. It invalidates you as a person physically and mentally and there are no solutions around. At the same time you are gaslighted by doctors and people because there is no clear diagnosis.
My wife is already on her 3rd year and I just could witness first hand how shallow is the knowledge of most doctors, how they have zero curiosity or enthusiasm to help and especially in Europe, how are they extremely averse to try anything with the "do not harm" in mind.
They think that doing nothing is better than trying a non-approved treatment and I'll put an example. My wife had a respiratory tract infection back in October which probably got while going to the GP by the way. With Long Covid her immune system seems very compromised, she never leaves home if it's not imperative because even with a wheelchair is too much effort. I don't attend almost any social event and I take a lot of precautions. Anyway, with the infection she was coughing blood for 3 days and then she was unable to breath properly, having drops of oxygen saturation down to 86% and waking up breathless in the middle of the night.
She documented her symptoms very well including her saturation measurements. The GP just told her to wait for a few weeks for full recovery and everything will be back to normal and he literally said he had no time to read her notes. She asked please to get an oxygen concentrator or at least be sent to a pulmonologist. This request was denied and of course the only option she had was to buy the concentrator on her own which helped a ton. Probably if she got it the 1st year she would be much better by now.
She is taking like 10 supplements and medications, she is using infrared light, oxygen concentrator, wheelchair, special pillows, asthma inhaler, etc... All this helps her to have a bearable existence but guess what, not a single thing was proposed and prescribed by the doctors. Almost everything she takes is based on small studies from internet and experiences from patients. Mostly from the USA where doctors are much more open minded and willing to take risks which is necessary when your default baseline is almost like being a tetraplegic with dementia and chronic pain.
She has to get pretty harmless drugs like Sulodexide (a blood thinner) from other countries in a shady way because the Doctors in the Netherlands won't even prescribe this.
There is some progress in diagnosis or biomarkers detection and some promising studies for cures like monoclonal antibodies, antivirals and others. But meanwhile it's a pure nightmare to live with Long Covid.
I was halfway through your comment and wondered which country this would be. Well, hello fellow Dutchie.
Since my father's death, I say In the Netherlands, doctors only start acting when you are dying.
My father's GP let him die of acute leukemia, guessing his severe tiredness had something to do with an onset of diabetes. It was not a single visit. Had no bloodwork done. GP claimed to be specialized in geriatrics. My father was 63.
About a day after his last visit my mom took him to the ER, which did bloodwork, and a couple of days later he died ( they tried an emergency chemo ).
I'm very sorry to hear that your father died a preventable death.
I'm currently in a Dutch hospital, recovering from an (attmpted, they ended up leaving it inside me, can't fully explain why) appendectomy. From calling the after hours huisarts number with a stomach ache to being on the operating table was less than 24 hours for me. The hospital stay have been amazing and I doubt I would have had such prompt treatment back in Canada.
But I have also had to argue with the receptionist for over 10 minutes to be able to speak with my GP here for a consult after I paid for private bloodwork with two critical results and 6 out of normal range... So I feel like it's down to luck here when they decide to take things seriously.
I don't know what happened in your case but the standard of care for simple appendicitis is now to try a course of antibiotics first before a surgical appendectomy.
I'm currently on a course of antibiotics. They said the tissue around the appendix was to infected and they were scared they would rip it and damage something. They are giving me the option to have the appendectomy after I successfully recover with antibiotics but advise against it. I wish we had started with the antibiotics but here we are now.
There is obviously whole medical system for cash paying upper class. That’s why I am trying to have some cash on hand for medical emergency. Few thousand euros can make a difference of 50 years in treatment methods here in Germany. The outcome may be massively better this way. Sadly I learned this lesson the hard way.
This is what pisses me off about public medicine. If you're going to provide a service that's so bad I have to save for a private doctor anyway, why in the hell am I paying so much in taxes towards it? Out of the goodness of my heart for others (so they can also receive shitty care)?
And yeah the dying comment is 100% true for Denmark too. The doctors have no clue about what preventative treatment is and will just let it fester into something more serious they're forced to treat - diabetes is a huge example of this.
From personal experience, I was left waiting for a testicular cancer biopsy for over a year. After the operation I found out if I did have cancer there was a high chance the biopsy would've caused it to progress much more rapidly (as opposed to other methods of checking). So great you let the cancer grow in my nuts for a year, and then you make it more aggressive? wtf?? Thankfully I was diagnosed cancer free.
We pay a lot of taxes for healthcare insurance, and the primary level of healthcare is totally fscked. When the employer has to deduct the insurance from your paycheck, even goddamn cent is double checked by the government... when your primary care physician quits/dies/retires, well, "sorry, there are no doctors taking new patients in your area". Further away? Nope. Somewhere finally a new doctor starts and accepts new patients... this: https://images.24ur.com/media/images/1106xX/Sep2024/5916255a... (yes, this is the line of people without a primary doctor trying to get one).
So, fever, general unwell feeling... could be a flu.. could be bacterial.. probably just a flu.. or a cold... it's always just a cold.. but are you sure? You could go to a private doctor, pay for the checkup, pay for the blood work, but will you pay if it's probaby just a cold/flu?
Feeling really bad and also start vomiting + diarrhea? Go to the only place where you can get checked out fast... the emergency room... and then emergency protocols have to be implemented there, because there are too many people there, and they can't handle it.
that is a horrible way to be treated by a doctor. In Germany you have free choice of your doctors. Although sometimes you have to wait quite a bit to get appointments...
I am not sure, but with a a European health insurance card you should be able to also go to doctors in other countries and be at least partially covered by your insurance.
GPs here are just absolutely useless. Have you tried reaching out to one of the specialized clinics? I've been under treatment for ME/CFS at Vermoeidheidkliniek (yeah, not the best name) and all of the specialists there have been incredibly helpful and willing to try different things.
They don't have very good reviews in Google but I can give it a try. My wife is in the queue for the new "Long Covid Clinics" but who knows when there will be room... they opened in November and we didn't hear anything else since then.
Anything not immediately fatal is indeed treated by just taking it easy and perhaps some paracetamol for the placebo effect.
I have a chronic illness in the same kind of category and it took me years to find out what it was and to get proper treatment. Which has improved my quality of life dramatically!
But even now I travel halfway across the country to a university hospital where a specialist takes me seriously, the GP is still a bit 'meh whatever'. I'm fairly sure he put a "psychosomatic/hypochondriac" flag on my file and never removed it when the specialists diagnosed me.
Our healthcare system has overcorrected on what they dismiss as 'aanstellerij' en 'Amerikaanse toestanden' and many in the field are actually quite proud of this.
I find specialists here have zero intellectual curiosity. Sure, they recognize the most common condition in their field when blatantly obvious.
When it comes to the second most common issue in their field or anything not blatantly obvious (significant test result and 10/10 excruciating pain), they will just offer no diagnosis and go no further.
Just getting them to do an exam or even order a test is a huge challenge…
It seems to depend on who you see and, probably, where you are in the country. Every time I go in to see my GP he seems to schedule a battery off lab work. And when I went to a dermatologist for an annual mole exam I left with prescriptions for dandruff and eczema.
I've been following her and rooting for her along with thousands of others, and reading this just now made me smile and tear up a little. I'm so happy for her!
Fully armed spikes (or it's pieces) which are multifunction weapon with unknown mechanisms and side effects.. as a remedy ? - it's like fighting a fire with a fire - but there _was_ some advise to avoid physical activity after vaccination as it could keep that fire only in the muscle - ignoring that more or less of the vaccine will be moved with the blood and do random unknown damage anyway.. to be studied later what maybe could be avoided, "saving" on costs of that half baked experiment needed to make a way to use of "newer, better" vaccines :/
We already had deeply insightful discussions on this topic here, but I will repeat for new HN people.
Covid-19 tends to cause post-viral complications, which manifest themselves as chronic fatigue, body temperature dysregulation, air hunger / shortness of breath with SpO2 of 99%, various neurological symptoms: pain/tingling/numbing sensations in the extremities, parosmia (a distorted sense of smell), parageusia (a distorted sense of taste), difficulties swallowing, cognitive decline.
According to numerous trials and errors by different people, it was collectively concluded that the condition is caused by some kind of metabolic impairment that presumably affects the ability of mitochondria to produce the adequate levels of ATP. As a direct consequence of that insufficiency, the immune system gets activated and starts to attack body's own tissues. When this happens, the blood vessels start to develop micro-clotting, causing blood flow problems that exacerbate metabolic issues even further. Additional tell signs are increased HOMA-IR and/or triglycerides in the blood work, suggesting that cells of the body cannot utilize the nutrient substrates in full.
This represents a vicious cycle of a typical post-Covid pathology. The good news is that it can be treated and healed. The bad news is that it may take some time (months, years) and will power, while medical workers around the corner have no clue. The core of therapy consists of a light immunosuppression in conjunction with therapeutical doses of specific vitamins and vitamin-like substances, all being supported with minerals, vitamin-rich diet, good rest, good sleep, mild physical and mental activities every day.
For those people who still suffering from it, I am putting a link to a site [0] that aggregates some first-hand evidences and research information. A usual note of caution is that every situation is different and you should consult your doctor.
Edit: "collectively concluded" is used in the sense that post-covid suffers were able to gain observable improvements in their condition being "a collective of people" suffering from post-covid.
There has been no such collective conclusion. It could be correct and there are several viable hypotheses in there worthy of further research but nothing that meets the standards of evidence-based medicine.
Survival comes first, while evidence-based, official, one-size-fits-all approvals do not come into existence until a large enough statistical samples are collected. Chicken and egg dilemma of its own.
P.S. People are preparing for WW III with a far greater enthusiasm now, imho. Which is sad.
I've read that certain people can't convert NMN to NAD very well and the accumulation of NMN can actually result in serious neurological issues. Seems to be working fine for you, but I would caution people here to do their research before using any supplements. Some of them can be very harmful, especially in early stages where they haven't been properly studied.
> ...the condition is caused by some kind of metabolic impairment that presumably affects the ability of mitochondria to produce the adequate levels of ATP. As a direct consequence of that insufficiency, the immune system gets activated and starts to attack body's own tissues.
Why would the metabolic impairment cause the immune system to get activated? Also do tests show which immune cells get activated? Are there existing medications that can moderate those immune cells that might work?
Some people have high levels of COVID-19 spike protein, long after main infection is gone. There is very easy way to test for it.
Some retroviruses like HIV are able to modify DNA, and embed themselves into cells permanently. Perhaps COVID-19 is doing something similar! It would be nice to do DNA scan, for sequences that produce spike proteins, on people with long COVID symptoms!
Coronaviruses are RNA based and do not carry the reverse-transcriptase proteins (as retroviruses like HIV do) which would be necessary to embed genetic material in host cells' DNA. They directly cause production of the proteins to copy their RNA into new virus capsids.
Proteins like reverse-transcriptase are quite complex, it’s not a mutation that would appear so suddenly. Also, having such a protein would significantly change how the virus operates, and it would be visible upon sequencing it.
I am way outside my area of expertise and speculating wildly here, but aren't various retroviruses quite common in our environment? Enough so that many COVID-19 infections must have occurred simultaneously with one of many such viruses?
So, logically, COVID-19 viral components likely have coexisted inside our bodies with some quantity of reverse transcriptase, no?
I do know that we find viral DNA in human DNA, likely as a result of past retroviral activity. I wonder if we ever find sequences from non-retroviruses that have hitched a ride so to speak.
Virus genes aren't like lego pieces that just snap together and work. Genetics is a very delicate balance. Retroviral RNA evolved to be packaged up in such a way that it's ready to be transcribed by the reverse transcriptase. Coronaviruses didn't do this.
If this was actually what was happening then we'd expect to either see:
* (if it utilizes a present retroviral reverse transcriptase) only people with active retrovirus infections getting long COVID
* (if a variant picked up the gene from another retrovirus) evidence for reverse transcriptase being copied into a widely circulating variant that for some reason is only activated in some people
We don't see either of these things happening. It would be extremely obvious from the data and genetic samples that that happened. There's also generally very little evidence for viruses picking up features across long genetic distances. If this was common we'd see more of it.
SARS-CoV-2 also generally infects different types of cells than the ones that HIV does, so even if that was a possibility genetically, it's unlikely because they're not active in the same cells.
Yep, something like spike protein that is more persistent than usual may provoke an inadequate immune response in the body, which is known to cause clotting, which is known to cause tissue hypoxia, which, in turn, is known to induce a mitochondrial dysfunction, starting the vicious cycle of pathology.
Chicken and Egg dilemma. We have a lot to discover and formalize. I do not say that you are not right, your suggestion is plausible, we have to find out.
Covid-19 is not a retrovirus. Otherwise, the people would not be able to reliably overcome it again and again. The same applies to post-covid - once you tame it by finding methods of correcting it, it goes away. I agree with you on necessity of further researches, but they require not only money, but also plenty of time, decades perhaps.
I would disagree with that. We are only a few years in, many people did not recover yet. And taking severe medication is not exactly "correction".
There is a research that suggest some unusual COVID-19 variants are able to penetrate cell nucleus. That is why we need DNA sequencing studies! And not just on patients, but their microbiome as well!
And I do not think it will take decades, but couple of years maybe months!
Long covid, and CFS, are almost certainly the same disease. The person you're replying to is massively overselling the efficacy of treatment though, most people with this kind of fatigue tend to improve to a lower level of functioning than before their fatigue. Nobody has much idea of what the underlying disease is, and there's no evidence that you can cure it with any treatment
If you talk about ME/CFS, then it is known to be helpful in some specific cases, but not universally. People with ME/CFS tend to be driven by autoimmunity as a primal factor of the disease.
There is a clear problem of diagnosis and intersection of the symptoms. What we call ME/CFS today may be several distinct diseases with overlapping symptoms.
To give you a direct answer: it helps with chronic fatigue, but only if one of the causes of the illness has a metabolic impairment component in it. Otherwise, no improvements are observed.
I've read about long COVID and the hallmarks but it seems like Dianna is experiencing something far worse than average. Chronic fatigue is one thing but unable to stand for two years is horrendous. Are there any other recorded cases this severe?
To further this, is "long COVID" actually something we can definitively diagnose? Clearly something is going on with Dianna, but if the symptoms or severity don't match other long COVID cases perhaps there is something else going on there.
Usual blood work panel tends to be excellent for post covid suffers. So no widely available diagnostic abilities so far, except looking for hallmark symptoms and trying to get slightest hints from the blood work variations.
Potentially, for mild and heavy forms of post-covid, measuring blood lactate and bicarbonate levels may be helpful [0]. But nobody seems to care enough to follow up with organized evaluations to introduce it into general practice.
I am not aware about anyone being hit harder than Dianna by post-covid. Her case is extreme.
While she is gaining her power back, there is still a considerable probability of acquiring dementia for her, she is in the grey zone now.
And note, we read only what meets the eye. Below that line, there were extreme panic attacks (crashes) with a sense of imminent death. I think that in many cases, the death by itself is more peaceful than 100x repetitions of the associated experiences.
Panic attacks are usually treated as a psychological phenomenon, but in case of post-covid they have metabolic nature. Tiny parts of body tissues literally die out of energy starvation. It applies to energy-hungry organs first, brain, nervous system, heart, liver, muscles. The heavy cases of post covid is like being a zombie who is still alive, but with tissue hypoxia and consequential tiny necrotic spots hidden inside under a healthy rosy skin.
Take a look at Fig. 1 here [0]. That image was taken using muscle biopsy from someone suffering from a metabolic condition.
We can clearly see and observe affected spots in tissues using direct material extraction (biopsy). However, not all parts of the body are easily reachable using that method without causing more harm to a living organism. The effect is also observable using CT scanning (way less conclusive).
So the last paragraph is quite real, unfortunately. I presume that a tiny part of the brain/nervous system dies when you have a metabolic panic attack, because there is a pronounced cognitive decline after each such attack.
I’m going to ask, not because I have an agenda but because I’m genuinely ignorant but curious: I see a lot of people mentioning things like mitochondria and spike proteins; can any of this be caused by the virus OR the vaccine? or just the whole virus? Thanks!
Let's imagine for a moment that the antigen produced by the vaccine was the exact one that does cause all of these symptoms. Even in this hypothetical world, only the whole virus can cause long term symptoms, because only it can replicate itself and persist.
The vaccine expresses itself once, and is gone. All that's left after a few days is the immune system's memory, no different than any other antigen.
There is no mechanism for the body to chronically begin to create vaccine spike proteins after receiving the vaccine.
There is however a mechanism for the body to attribute any random real or imagined symptom to something they heard about and think sounds right.
Any virus and any vaccine can extremely rarely cause a post-viral malaise with similar symptoms. But Covid-19 (as a virus) stands out in terms of frequency of these occurrences moving the needle from "extremely rarely (~never)" to "occasionally (~it happens with my friends and family)".
In terms of outcomes and probabilities, having a vaccine is 10000x better than facing a virus directly. Note that in some rare cases, the burden of certain chronical health conditions may overweight the benefits of a vaccine, so it is always better to consult to a doctor who knows you well.
Personal anecdotes: I do not know anyone who developed a post-covid condition after being vaccinated, but I know plenty of people who developed a post-covid after covid. I knew people who died from covid not being vaccinated.
There is a tiny handful of people that developed adverse reactions to just the vaccine and it's dishonest to pretend those cases didn't happen just because dumbfucks are going to hear that story and use that as an excuse to not get the vaccine
The question here is specifically about chronic, long-term, Long-Covid-like adverse reactions.
The vaccine certainly has occasionally caused immediate, acute issues with people, which is why you aren't supposed to leave the administration site for 15 minutes after you get it.
But there are not chronic adverse reactions to the vaccines.
The mRNA vaccine tells your cells to create the spike protein that was isolated from the original virus for about 48 hours at levels much lower than the virus itself. mRNA is used up by this process which is why your cells stop producing the spike protein and go back to their previous functions. Your immune system then attacks the spike protein and is better adapted to do this next time giving you better protection.
The virus takes over your cells completely turning them into covid virus factories destroying them in the process the new viruses then continues until your immune system can stop this. During this time the amount of spike protein from the viruses are much higher by order of magnitude than with the mRNA vaccine along with the damage cause by the virus replicating itself.
The spike protein is thought to have some adverse effects around heart issues, it is not well understood. However the risk is thought to be much higher from the virus than the vaccine due to shear volume of spike protein and the data seems to confirm this.
One hallmark sign of a post-covid malaise is that your body stays capable way longer than your neurological and cognitive functions.
While you have expressed healthy grains of doubt, the case of Dianna goes in line with a post-covid progression. Not being able to get out of the bed means that she physically could do it from time to time for sure, but her brain could not reliably cope with navigational tasks, so she was risking sudden falls and further traumatization. Add the extreme fatigue every such exercise had caused. It is not exactly a bedridden condition, you are right, but it is bed-attached for sure.
It is not a "psycho" part of the illness as you view it. It is an organic condition caused by metabolic and immunological derangements occurring in the body of a post-covid patient. You are not alone in your views, many medical doctors make the same judgements when they see post-covid patients for the first time. In their world, it is always an organic/psycho separation, but when the underlying metabolic mechanisms are impaired, you get the full spectrum of manifestations.
You provided good points though, something I did not think about.
I appreciate you at least responding, but it's clear that you were offended by me expressing skepticism about a specific person claiming to be a COVID long hauler, who directly profits from doing so, and who presents a purported symptomology that contradicts human physiology and exercise science, despite me bending over backwards to be tactful regarding the subject of long COVID. Do you really want this person being your poster child?
I am not offended at all, mind you. In reverse, I applaud to your criticism because it gives a fresh perspective, so I upvoted your post :) The only mistake you make is believing that there is a significant psy component in it, and that a human body and its biochemistry is a mechanical Newtonian-like macro-world apparatus.
Do we know the exact origins of every virus? Does it matter in the grand scheme? Perhaps it helps in developing treatments, but I would question what specific advantages you get knowing the exact origin of a mutating virus with multiple strains. I guess my point is that it seems like our time would be better spent developing treatments and protections against this and future pandemics instead.
Understanding the origin is the most critical piece of information to avoid future pandemics. Current data is inconclusive even for the most basic questions, such as the origin being natural or not, which very much matters, but investigation efforts are actively suppressed. Or at least I would think it matters, you and everyone else do not seem to care.
If you're thinking about having St John's Wort, and are currently taking any head-medications such as antidepressants or benzos, make sure you speak to your doctor/GP first.
Even though it's a plant and is natural, it can either reduce the effect of some medications or increase the strength. So wouldn't take it without medical advice.
Anyone who suffers from what? Why is St John’s Wort good for it?
I will never watch this type of video, but it sure does sounds like whatever affected @physicsgirl was awfully serious if it left her non-ambulatory for multiple years.
It sounds like maybe you’ve had a positive experience that you might be willing to elaborate on?
> And what's with this HN pattern of acting all innocuous and going "uh... care to elaborate a little further? hmm?? hm???"
The 'pattern' is that comments are supposed to provide some value and not just generic statements. The HN community overall doesn't want the comment section to turn into a Facebook comment style section.
So if you're going to comment, at least have something to back it up or give something that contributes to the quality of the discussion.
If you advertise/recommend something it is your obligation to make the case for it. Not for the reader to research it. We should want this board to keep its high information value, not devolve into low information spam.
"Ignore your illness, and just keep working" is not a viable course of action, especially not with long-covid, speaking from experience here. In third-world countries without a socialized healthcare, this simply means these people work themselves to death, starve themselves to death, or need to rely on others for their survival. It is an absurd illusion that one can just ignore a serious health issue this way.
Or, in language a non-empath like you you would comprehend: the world is better off without your opinion.
I live in Kenya and have not heard of a single person who got "long covid", or knows someone who does. It has nothing to do with working oneself to death as you imagine, this is a phenomenon that does not exist outside a certain social bubble.
You say you speak from experience. What exactly is your third world experience based on?
Post-viral fatigue definitely happens in Africa, but only very privileged people with the means to lay around doing nothing will allow it to knock them down so hard they literally don't stand up once in two years. Post-viral fatigue to this degree is a phenomenon of the idle upper class. It doesn't paralyze you, it just makes you tired and miserable. Normal people push through and carry on, because they must.
From long covid? And because they didn't go two years without standing? You can't really believe this. Going outside would not kill her. Choosing to stay in bed for two years has done her far more damage. Staying in bed is worse for you than hard drugs.
Unless you got cold fever and you're literally too frozen to get outside, or you got your leg broken, there is absolutely no way you wouldn't get out at the very least once a day.
I believe it's a mix of depression and lack of will, being hungry and having nothing to eat is the best way to make someone get back on his feet. It happens everyday with the lower class, but people in the top of society don't feel that very often, or even at all.
I'm 22 years old and suffer from Long COVID for 3 years now. I've written a bout my experience on my blog: https://tunn3l.pro. although not bedridden, my life got totally flipped upside down. I just want to live a normal live again. To all ME/CFS and LC sufferers: Don't give up!
Hi, I couldn't glean from the articles. But it sounds like you have breathing issues from long covid? it may sound ridiculous, but I developed gluten/lactose sensitivity during covid times. If I avoid gluten, lactose, canola oil I get far fewer symptoms. I know this likely isn't your issue but I do experience positive airway pressure, coughing, burping, chronic fatigue, exessive yawning. If that sounds like you maybe a dietary intolerance could be worth checking. For what it's worth, no doctors could diagnose me, they thought I had heartburn or "its in your head". It wasn't, cutting those things out did actually help enormously.
My wife and I got Covid during the first major wave (March/April 2020). I had no symptoms at all, but my wife ended up getting long Covid. GI issues, extreme tiredness, shortness of breath, brain fog, sleep disruption, etc etc. She lost maybe 10-12% of her body weight.
After maybe 8 months of this we somehow decided to do a low-Fodmap diet (I participated for support). That included cutting out gluten and dairy (except butter). She healed right up. When we were re-introducing foods, for whatever reason, mushrooms and garlic both had negative effects, and we ended up keeping both out of our diets for a couple years.
Anyway, that's all to say I'd recommend people seriously look at their diet and try to spend a month or two doing low-fodmap if they're chronically suffering from long Covid. Worst case it doesn't help.
Yet another anecdote, but my wife and I both got COVID. I was quite a bit sicker than she was.
I later found out that I'm a type II diabetic, and almost certainly was at the time I had COVID given the timing. I had fairly severe fatigue symptoms preceding that diagnosis, and the diet/exercise changes I made to bring that under control look a lot like what your wife did, and also seem to have alleviated the fatigue.
There was about a 12 month separation between recovering from COVID and my own fatigue symptoms. Had the timing been a bit different I likely would have assumed I was suffering from long COVID, and would probably have been less inclined to see a doctor as a result.
None of this is to suggest that any given person is suffering from diabetes, that long COVID should be treated the same way, or that any given person with long COVID is self diagnosing. For anyone that is though, definitely consider talking to a doctor. Coincidences happen and you could have something that is both unrelated and treatable going on.
Anecdotally I went through a severe bout of IBS-C in my early 20s and the "cure" was to cut out wheat and dairy for an extended period of time (about a year and a half), at which point I was able to reintroduce them into my diet and I've been ~fine for about 20 years now. I've hypothesized that the lining of my intestine(s) had been damaged by the proteins and/or starches/sugars in those foods and needed a break and time to heal. I'm not a medical professional and my hypothesis has never been confirmed by one.
I had a similar experience with dairy. (Wheat is still out.) It used to give me severe digestive symptoms and inflammation, but after cutting it out for a year or so, I've been able to reintroduce it without any noticeable symptoms. No GI I've seen has really had answers for me, and I'm not really interested in seeing an "alternative medicine" doctor, although I'm sure they would claim to know what's going on. But I'd recommend trying an elimination diet to anyone who has unexplainable symptoms in that vein. The limitations are annoying at first, but you get used to it.
It's pathogenic yeasts that really drive the whole thing, and milk inflames the immune response. The trick with COVID is to take melatonin during and after it. Gut health is a longer journey as leaky gut takes awhile to heal.
> "its in your head"
insane that it's still so common...
I really get the sentiment that if you look at people who are told "it's all in your head" and then they find some obscure condition that is treatable, it might be considered borderline malpractice for the physician to have told them that... but does the frequency with which patients are told that maybe give some insight into how many psychosomatic patients there really are out there?
I don't think so. I have literal objective tested allergies and people ask me if I think the symptoms (allergic rhinitis) are psychosomatic all the time. So many people I talk to have real symptoms and down play them as probably having some mental component.
I mean, we had actual doctors doing the "In your head" song and dance before my wife was diagnosed with RA for a good 3-4 months. There was visible swelling/blistering and she couldn't walk unassisted. This is an anecdote of course, but, this was a very obvious condition, and we got "in your head"ed.
I was told I was “imagining” things, probably as a result of stress from overworking. And told if I relaxed, I’d find out I in fact had no problems.
lol, I had a spinal cord injury.
I laugh when I think about it, but there has been a lot of anger to get here.
Seems to me like that would be the number one offered advice when you get less than five minutes of time with a doctor under typical US doctor visits. Seems like a very convenient way to cycle patients through faster. The only downside is there's not really any scripts you can write which lowers your quota for which ever bigPharma the doctor has sold their soul
"it's in your head" diagnosis is when the medical establishment gives up and outsources the treatment to the patients themselves and that quite often does not end up well for the patient regardless of the true cause of the illness.
In my mind, that doesn't make the symptoms any less real to the person suffering from them and does absolutely nothing to remedy the situation. Even if it is in the person's head, any doctor offering that advice should be facing consequences for not offering a legitimate path for treatment.
Many conditions aren't well understood and simply don't have effective treatments.
My apologies if my comment sounded insensitive towards people who have real physical ailments, but there are cases where psychology may play a role and I firmly believe the medical system should take responsibility for those cases rather than shrugging them off and leaving the patient to figure it out on their own. First and foremost, they are leaving the patient suffering. Then there are other factors to consider, ranging from patients seeking out ineffective and unproven treatments for something that may not have a physiological basis to something having a physiological basis not being diagnosed because it was dismissed as having a psychological basis.
They do - we call them therapists and they are on the hook. Medical doctors deal with BODY related issues.
I'm not a medical professional, but as a firmware engineer I do bristle a bit at the suggestion that "hardware" and "software" problems can be so cleanly separated.
I had the same reaction. And it's so disappointing.
it's in my head but guess what? that's where I live! I didn't think my way into this particular problem and I can't think my way out this particular problem and I need external help to get back to normal.
It’s frustrating how often things get dismissed as "in your head" when the right tweak can make a huge difference.
> I developed gluten/lactose sensitivity during covid times
Same here, at least in regard to gluten. I was in my mid-forties, and I started experiencing painful bloating that often led to difficulty breathing, and after an hour or so of pain, vomiting. The involuntary 'protein spill' alleviated the pain of bloating, but I was left exhausted for the remainder of the day.
At first, these episodes occurred about once every 2 weeks, but they grew more and more common over a few months, until it was a nearly daily occurrence. I had become overweight (I'm still working on that), so my doctor concluded that I just needed to lose some body fat. It felt like there was something more serious more going on, but US health care.
Weeks later, I stumbled upon a science article describing how millions of people develop gluten sensitivity later in life. It described familiar symptoms and progression. As an experiment, I tried eliminating gluten from my diet (which is tricky, that stuff sneaks into surprising places), and I felt much better within a few days.
In the ~2 years since, I've had a few episodes, but I can almost always find a place where gluten snuck into my food (e.g., a taco place that added flour to its corn tortillas). On one occasion, I deliberately ate a bit of bread, and sure enough, 30 minutes later I was begging the porcelain gods for forgiveness.
I miss real bread, but for me, the blowback isn't worth it.
100%. it took me years to consider gluten/lactose as the root cause, because I'd been eating them for years and definitely never almost suffocated like the symptoms it causes now for me now.
You write very well, and there are some nice insights in there. I clicked through out of curiosity but ended up reading a lot.
It's a long shot, but my mild long covid symptoms practically disappeared since I've been taking MCT oil regularly. I was motivated to try it after reading this article: https://pubmed.ncbi.nlm.nih.gov/37415915/.
Which oil do you use?
I only started taking mct oil a few weeks ago (but I felt the effects basically immediately). I've been using this product (I think it is a local hungarian brand) https://nordvital.hu/products/mct-olaj-500-ml , but I doubt that the effects are specific to this one.
What's your regimen look like?
I drink two cups of coffee a day (in the morning and after lunch), and I put a tablespoon of mct oil in each of them. In the first few days I had minor diarrhea, probably it makes sense to introduce it more incrementally to avoid that.
I’ve had it for a few years too, it’s really hard, hang in there!
If you want another thing to try, I found that temporarily wearing a nicotine patch [1] helped a lot. But it seems like it doesn’t work for everyone.
[1] https://pubmed.ncbi.nlm.nih.gov/36650574/
I do not have full statistics, but people who smoke cigarettes are less prone for developing post-covid, according to the statistics I have.
My immediate thought back then was is that nicotine somehow plays the role of NAD (= B3 vitamin), thus fixing one of the core mechanisms of acquiring mitochondrial dysfunction after the covid (NAD deprivation).
This is interesting, (anecdotally) i have heard of people using nicotine patches for ADHD, and i've also (anecdotally) heard of ritalin etc being used to help people with CFG.
For people curious about the use of nicotine patches in the treatment of Long Covid, check https://x.com/TheNicotineTest/status/1884186271792390266
And if you have the ability, please support research into ME/cfs, Long Covid, and other post infection illness.
I know two people that are just now getting out of bed and able to do basic things, both diagnosed with Long COVID. Knew another that was sick for a year afterwards, and my brain can't hold info like it used to. It's ugly when it gets a hold of you, that's for sure.
For what it’s worth I had bad nerve pain from Covid and only thing that helped was weight lifting and a carnivore diet. I’d put more stock in the weight lifting though. I believe an increase in testosterone helped regulate my immune system. From what I understand women suffer more from auto immune diseases than men (at least it’s the case with MS) so maybe weight lifting is part of it.. good luck.
I have had the same issue for about as long and it's been a bear of a time to get anything done with it. Kudo's to you for taking a trip to have a treatment that might work done! It is very hard to take a lot of initiative and keep pushing (at least for me) with long covid.
My sister had ME/CFS after she had a burnout after her second kid. She was never permanently bed ridden but sometimes had to spend days resting or recovering after strain. She's not well today, but much better than at her worst. There wasn't really an accepted diagnose for it when my sister got it, and she had to fight to be recognised as sick.
I do wish Dianna the best recovery and future progress.
One of my dearest friends suffers from ME/CFS - she's been bed ridden for 3 years now. Any stimulation is just so painful her. Seeing Dianna actually able to get out of bed has brought a bit of hope back into my life
Check out Midwestern Doctor blog posts. Seems to turn every possible stone to get healthy results. Changed my thinking a lot https://www.midwesterndoctor.com/
Anecdote: Back in October '24 I got Covid. My only symptom that stuck around was lack of taste on my tongue (NOT Anosmia, it's lack of salty/sweet/sour/bitter response on the tongue itself), but only on the right half of my tongue. It slowly got better, but last week I lost taste on that side of my tongue again. The taste is coming back again now.
Anyway, I have no idea what's going on with me; it's not really severe enough to investigate further right now, and my case is only the tiniest part related to Dianna's.
Zinc is a critical cofactor for enzymes involved in the regeneration and function of taste receptor cells. These cells have a high turnover rate, and zinc deficiency can impair their renewal. Zinc supplementation is usually the first line of treatment in taste disturbances, especially when nerve damage is not suspect, and it's often effective. See, e.g.: https://www.sciencedirect.com/science/article/pii/S246854882...
Also: https://pubmed.ncbi.nlm.nih.gov/23305423/
It's possible that covid infection somehow disrupted zinc homeostasis. Taste receptor cells also express ACE2, which is what the virus tends to latch onto... I suppose a feasible mechanism -- or at least a hypothesis -- is that viral binding to ACE2 may have downregulated zinc-dependent signaling pathways (for e.g., those involving metallothioneins or zinc-finger transcription factors).
In circa 2022 I got covid and lost smell. First I couldn't smell the spices in the kitchen, but I thought nothing of it. But some days later, I couldn't smell WD-40. That's when I noticed I can't smell anything at all. My sense of smell never really recovered. After about a year, I could faintly smell menthol. Now I have to really try hard if I want to get some faint sense of smell, but a lot of time I just don't smell anything.
I completely lost taste and smell around 2022 too. It wasn't like a clogged nose, I could absolutely not sense anything with my tongue and nose (except for touch). I read stories about it not coming back for some people and it absolutely shook me. At that moment I realized how much I love delicious food and that smell is a great indicator for things you might not expect (e.g. heat).
It luckily fully came back in my case, but it took many months. But it was properly scary! So weird that a viral infection (that didn't even make me very sick) could have such long-lasting and potentially life-altering effects.
I got covid once back in the summer of '22. I had high fever (40C) for two days but my taste and smell were gone for an entire month. Losing two of my five senses for so long was something I never want to experience again.
Same. Lost both smell and taste for a few days after I got COVID in 2021. My taste came back quickly, but my sense of smell took longer to come back and is still probably about 50% diminished. I can't smell things from a distance, only up-close or if it's really strong. Like I can't tell if my house stinks because my garbage needs to be taken out, but I can smell it up close. I've just relegated myself to not being able to smell much anymore which I guess is better than some of the other Long COVID symptoms out there. I do miss smelling things though.
take a flashlight to your nostrils in a dark room with a mirror, are they inflamed? It could be reflux/silent reflux like I have, gases inflame the sinuses, then it's hard to breathe.
For any sinus inflammation issues, I would recommend trying Neti.
I had more or less constant inflammation growing up, two weeks of daily Neti solved that problem for good.
that didn't work for me. It helped in the moment but didn't address the underlying problem.
sorry to hear that, good luck
Fungi infections can also mess with your taste.
That's great to hear. I remember Simone Giertz breaking out the bad news to her followers and sounding no less serious than when she was talking about her own brain surgery.
My former co-worker got COVID twice, as preventive measures didn't fit into his moral framework, and the second time resulted in a mild case of long COVID. I'm saying "mild" as he was not bedridden, but the cognitive decline was noticeable.
Long COVID is no joke and seriously affect one's work as well private life.
>I'm saying "mild" as he was not bedridden, but the cognitive decline was noticeable.
I've noticed some of that with family members that have gotten covid, but it's hard to say that it's definitely that as they are older and age related decline is hard to nail down too.
My co-worker reported general "brain fog" - very much like due to prolonged sleep deprivation.
No false memories or loss of perception of time like in my older relatives going through age-related cognitive decline.
I've had COVID four times. No noticeable effects but I was triple vaxed. Also in NZ we didn't get COVID until it had gotten pretty mild.
Yeah cause people actually follow the rules. I was back in NZ from December 19 to like end of January 2020 and sw covid becoming a thing, back thru Bangkok and everyone's masked up, then to the UK again where people hadn't even heard anything about it ha ha. That was the times of the eerily orange daytime sky because of the Aussie fires.
Lockdown here everyone and their Mum is screwing around at the park, UK does not really have an attitude of social good imo, outside of one's own family.
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The entire problem with victim blaming is that "do it to yourself" is a sliding scale and it's hard to know where to properly draw the line.
I think most of us would probably agree that getting covid while doing nothing to protect yourself makes one less sympathetic than many other victims, but I firmly disagree with this sweeping statement about victim blaming in general.
There are people literally claiming masks and vaccines are against their religion. That's not victim blaming, it's stating a fact. It's the same as saying Joe got hurt in a car crash and wasn't wearing a seatbelt.
Like I said, I'm not saying that this was victim blaming, I'm only protesting against this explanation for why it's not:
> It's not really victim blaming if you do it to yourself.
"They did it to themselves" is always the structure of a victim blaming exercise. That doesn't mean that every time someone says "they did it to themselves" it's victim blaming, but you have to actually demonstrate why it's true in this case that the victim did it to themselves.
For example, to add some nuance to your car crash example: if Joe died in a car crash and wasn't wearing his seatbelt, it would obviously not be victim blaming if he were drunk and spun out of control. It probably would be victim blaming if he were hit by a drunk and happened to also not be wearing his seatbelt. Yes, he should have been wearing a seatbelt, but the context makes him a victim regardless, and it would be inappropriate to say "he did it to himself", even if it might have been appropriate in the case where he was also the drunk.
I see, so something you can't help is your fault. Nice look.
This is literally the definition of victim-blaming:
"Victim blaming occurs when the victim of a crime or any wrongful act is held entirely or partially at fault for the harm that befell them."
Imagine if I said "She always wore low-cut dresses. Her lack of preventative measures caused her to get raped. She did it to herself!"
Lots of people masking up still get COVID.
> Lots of people masking up still get COVID.
Lots of people are careful while crossing the street, yet some of those careful people still get hit by cars. That doesn't mean that you stop being careful while crossing the street.
As for the whole mask debate. I'm not sure how effective they were ate preventing people from catching COVID. After all, most people wore masks that were poorly fitting. I am fairly confident that it cut down on the amount of airborne COVID, or at least reduced exposure in face-to-face interactions. Unfortunately, most people only seemed to be concerned about the selfish angle and few people seemed to be concerned about the selfless angle.
If you're hit by a car, there is another party to the incident whose responsibility to avoid hitting people is at play. It is generally understood that a driver has a greater duty to avoid hitting people than people do to avoid getting hit. To wit, people have a right to not be hit by cars. It is a crime or wrongful act.
Victim Blaming is a logical fallacy in which the responsibility for an incident is misattributed, sloughing blame from the more-responsible party to the less-responsible party.
Catching a disease is not like being hit by a car, even by accident, because there is not a legal obligation to avoid infecting other people if you have a disease. If you catch covid, no crime has been committed.
In fact, the presumption of duty is often reversed, except in exceptionally malicious circumstances. The responsibility for being accidentally infected usually lies with the one who failed to avoid it. Although, it is not unthinkable to expect people to have a legal duty to avoid infecting others, say, by wearing a mask...
But if a person denies that idea, they can't at the same time claim it's not their responsibility that they got sick.
Getting sick with COVID isn't a crime or wrongful act. There is no perpetrator.
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Masks, gloves, and frequent hand washing with soap and warm water have been proven to work for both COVID and other viral diseases and this has been settled science for a long, long, time.
Of course your definition of "proven to work" may mean "works 100% of the time with no exceptions" and that is an impossible bar to meet.
My, and many others', definition of "proven to work" is "reduces the rate of spread to the point that pandemics are impossible once an outbreak has been detected".
I've been a volunteer EMT for over 20 years and have interacted with many patients. In the mid-2000s after a particularly nasty bout of gastroenteritis I became the PPE (personal protective equipment) and hygiene tyrant.
Despite handling so many COVID patients it is impossible to even begin counting them, I have never tested positive for COVID and during the height of the pandemic I was being tested weekly (I was both a critical defense worker who needed a passed test to work in person AND a public health worker).
edit: that DOES NOT mean that PPE is 100% effective, it means that PPE in plus my hyper-anal stance on hygiene PLUS good old fashioned random chance favored me.
Even today I will don a mask prior to interacting with a patient if dispatch tells me there are respiratory issues and will put one on the second I hear a cough.
Between PPE and vaccines I can count the number of times I have been sick since 2020 on zero fingers.
> Masks, gloves, and frequent hand washing with soap and warm water have been proven to work for both COVID and other viral diseases and this has been settled science for a long, long, time.
Before COVID times people didn't even do the most basic of measures like staying home while sick, regular hand washing, sneezing into elbows instead of the air or their hands, etc. Once COVID happened and the media told them that they had to everybody became hyper-vigilant about preventative measures. Now that it's been a few years since the height of the pandemic people are back to being out and about with little consideration for how their actions affect others. People go out sick, nobody's getting seasonal vaccines, nobody cares (of course I'm being slightly hyperbolic and n=1 in my anecdata).
I shouldn't be surprised but it is a bit disheartening to be sitting next to somebody at a bar or restaurant and hear them say "oh I'm kind of sick right now" :-/
Joining the current century and getting vaccinated perhaps?
I was vaccinated and boosted, ended up catching covid 3x so far.
Now, hop in your time machine and do the A/B test.
Intramuscular vaccinations do not significantly prevent infection of the upper respiratory immune compartment (mucosal IgA antibodies, not humoral covered by IgG). The efficiency against infection by sars-cov-2 is about 20%. That means 80% get infected.
Now, the intramuscular injection vaccines do provide tissue resident B (+IgG antibodies) and T cells in the body serum (humoral, not mucosal) immune compartment and this has been proven to prevent serious (hospitalization) by covid-19 with decent (>50%) efficiency. These IgG antibodies do not seep into the upper respiratory (mucosal compartment) and provide protection there though; only the lower lungs.
But infection? The only good mitigation, lacking a proper intranasal vaccine like India has, is wearing a well fit and sealed mask like an N95 with good practices.
Infection isn't the only concern.
Severity of disease course is a consideration.
Read my second paragraph.
Serious question: How many boosters, and how many more do you plan to take until you give up?
I'm not OP, but in my case the answer is the same as flu - it's likely to be a routine annual thing. Eventually it'll probably be part of the flu shot.
Why “give up”? It’s just like a flu shot, might as well take it every year. (Until Republicans decide to ban it outright, that is: https://amp.idahostatesman.com/news/politics-government/stat...)
Because the poster said that he had covid 3 times despite the shot.
It's not a prophylactic, but it can significantly reduce severity of symptoms as well as the chances of getting long COVID.
Joining the current century! Get an mRNA injection!
Great PR.
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It's interesting to me how COVID vaccine skepticism has persisted so long despite the evidence the vaccine was safe and effective.
All the nightmare scenarios and long-term side effects people speculated about never happened and more and more doses of the vaccine have been taken safely.
Regular vaccine skepticism has persisted for far longer, even after one of the cornerstones was exposed as outright fraud. We’ve got a “vaccines cause autism” nut in the Capitol right now about to be put in charge of the government’s health services. Covid vaccine hesitancy is nothing by comparison.
> safe and effective
Do you have any long studies you can point to? Let’s go very short. 5 years or more?
The “The Science” crowd is so perplexing. You can’t believe in the upside in just faith. That’s exactly what you’re pretending not to do.
James 2:17
“So also faith by itself, if it does not have works, is dead.”
People are not doing science in lieu of faith. They are putting action to their beliefs and trying to improve the shared human condition.
Water wells do not build themselves.
Sure. mRNA vaccines didn't emerge spontaneously during covid. They were studied for many years before, which is why they were so readily available for covid. Just because you never heard of their existence prior to covid doesn't mean they weren't the subject of intense study. The first mRNA vaccines were tested on mice in the 1990s, and on humans in 2013.
I'm still waiting to become magnetic! That and I want to shed spike proteins like a Pokemon.
"Do you have 5 years or more of evidence about this thing that has existed for less than that time?"
Obviously this is not a good faith question.
And yes, we may find out that the vaccines are, over a long period of time, not perfectly safe. But we do have enough data to know they aren't super risky (at least for the vast majority), because big effects would be easy to see, and we do know that COVID is very risky. Classic economic thinking question: "compared to what?"
Do you need big negative effects to outweigh the pros of another booster? If you take an under 40 healthy person who already had covid, the vaccine did basically nothing for them after a few months. It doesnt take a "big effect" to counter that, right?
Depends on a bunch of factors, e.g. which booster, which variant, the person, and the relationship between dependent and independent variables in different risks from both COVID and the vaccine, but for the peak of the pandemic, the answer is no -- the risk of catching COVID was so large and our treatment wasn't honed in that you'd have to assume a pretty high rate of serious unknown long-term issues for it to come out net negative in most cases. Once we got past the peak and with particular variants where the boosters were less effective, that changed (and that was also when you found out that some people's belief in the vaccine was ultimately religious in nature).
There weren't a lot of people trying to model that risk, but of the ones who were the vaccine looked pretty compelling as a better bet for the whole of the peak pandemic. And maybe it turns out that 15 years out from the vaccine everyone suddenly dies! But the expected value there is highly unlikely.
So I guess the question is with everything we know today, when and for whom was it a net benefit to go out and get the shot?
E.g. it almost certainly wasn't for kids at any point. For people who'd already had it and recovered, it probably wasn't.
For folks over 65 with comorbidities and no previous exposure, it was probably a solid win to get it.
Would it be a good idea for everyone to go out and get one today?
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Most people are fully aware that any vaccine can, in rare cases, cause all kinds of problems. I haven't seen many instances of people acting like that isn't the case. The internet is a big place, and I don't doubt that you've felt silenced, but from what I've seen people are largely sympathetic to those who have experienced problems with the vaccines and are often quick to point out the fact that some percentage of the population not being able to take vaccines is exactly why it's so important that those who can take them get them.
The folks I have seen shut down tend to be the ones who say that the vaccine did things like turning them "magnetic" or say that everyone should avoid the vaccine because the risks of the vaccine outweigh the risks of the disease. I guess I'm glad I'm not hanging out in places where people will attack or silence someone for trying to protect themself and others and being unlucky enough to have a bad reaction from it.
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A close family member has permanent heart failure caused by the first Covid booster.
They now go to the top heart hospital in the world.
The doctors there say that while nothing can be proven for certain - obviously - the timing of their booster and the onset of their heart symptoms and the fact that there was no indication they had Covid at the time all point to the high probability it was the vaccine.
And they’ve seen this in other patients.
The scary thing is that this person had symptoms of heart failure for months before going to the ER and if they hadn’t, would have probably just died in their sleep long after getting the shot and it would have been a mystery, chalked up to bad luck and age.
Ironically, their current status with heart failure puts them in a high risk group and the recommendation is that they keep getting Covid boosters. The logic here is that the chances of getting another bad reaction from the vaccine is overruled by the chances they’d die from severe Covid.
It’s not as cut and dry as people on either side of this debate want to make it.
Doctors are as susceptible as anyone to all the cognitive biases that result in post hoc ergo propter hoc. I wouldn’t assume they’re correct about the cause just because of the timing and the fact that they’re doctors.
Sure. Anything is possible.
But this is a case of a person with no positive Covid tests or symptoms suddenly developing heart failure mere days after getting the booster.
There is this absurd idea that unlike every other vaccine, the Covid vaccines have absolutely no harmful side effects for anyone, ever.
Well no, the idea is just that, like most vaccines, the bad side effects are very uncommon.
The other side is saying that there’s this silent epidemic of terrible side effects hitting a ton of people, but it’s all anecdotal.
You say “anything is possible” like having heart failure due to other causes is some absurdly rare thing. It happens. The odds of this happening by coincidence are not that low.
If there are a ton of people getting heart failure from Covid vaccines, it should show up in the data. Has it?
Side effects can be uncommon while also passing our prior extremely low thresholds for acceptable vaccine safety. That might change the recommendation about who should get it or how often.
Cardiovascular deaths have increased since Covid. Makes sense, because Covid causes heart damage. The vaccine also produces the thing that causes the heart damage - the spike protein - so there's at least a mechanism at play for the vaccine to cause similar looking damage.
And while mRNA vaccines have been tested for decades, the Covid vaccine was only "tested" during the pandemic because we created it on the spot. At this point over 70% of the US population has had both Covid and the vaccine. So if someone drops dead from viral heart disease, there's no way to know if it was from one or the other. We don't have pre-pandemic trials of this vaccine to compare to.
> You say “anything is possible” like having heart failure due to other causes is some absurdly rare thing.
Viral heart damage is rare.
Additionally, in my personal case, the symptoms of heart damage were present for nearly two months before a diagnosis. Early concerns about the vaccine were dismissed by pointing out that side effects from vaccines present very soon - hours, days - after administering. But it's entirely possible to get viral heart damage, not notice it, and chug along for quite a while before it kills you, if it ever does.
All I'm saying is that there seems to be a clear mechanism for the vaccine to cause heart damage, and that I'm not convinced that we can even really know the true rate of damage caused by the vaccine because most people have both been infected with Covid and received the vaccine.
I'm not making any claims about the magnitude, but I don't think it's anything crazy like I dunno, that half of everyone gets heart damage from the shot. But I wouldn't be surprised if it's just high enough that it changes the calculus for people who aren't in a high risk group.
I want to be clear that I think mRNA vaccines are revolutionary and a good thing.
But it also seems like there's more room for catastrophic error because you're no longer just injecting a static dose of dead material. I'm sure we'll also see multiple versions of future vaccines tailored to genetic variations in the population, things like that. For example, maybe some people produce way more spike protein than others from the shot? Maybe that's a small group so it doesn't present in routine testing?
It just seems like we're in the early stages of being able to administer these things as safely as we're used to. Maybe we got lucky with this one. Who knows.
(Some of my questions might have answers and I'm just not aware of them.)
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Not OP, but I still wear a mask on planes, wash my hands more often and more thoroughly, avoid touching my eyes, use more air filters, and don't share foods with my kids.
Same! Prior to the pandemic I almost always got sick post flight. I now wear a mask and take better precautions and all that and haven't been sick after being a lot more cautious about it. Frankly, worth it for me as I'd often end up miserable for weeks after a trip. Minor inconvenience of wearing a mask and being more aware of what I'm doing results in far less pain later.
Yeah, I'm not paying for a week in the South Pacific to spend the whole time recovering from a cold.
Cannot speak for the person before, but I gave up on any protection. With 3 children from 3-10 it will catch me anyhow.
And while kids often end up with just headache and slight fever that goes away after a day - adults end with at least proper flu (e.g. higher fever, joints/muscle pain ...) for a week or two.
The tragedy isn’t that we don’t wear masks routinely, it’s that people think they have a right to infect anyone because of their own sense of personal freedom.
Immediately when restrictions ended here, you could be in a large department store or supermarket and hear people coughing badly, or sneezing. If you know you feel under the weather, pop on a mask. But no, “freedom”, “it’s a conspiracy”. I swear “freedom” is just short hand for “I’m an asshole”.
I don't get it. People just hop on public transit and will be coughing every ten seconds. It is a pleasant surprise if they even go as far as coughing into their elbow.
This was always true before covid. Some of us reset our expectations during covid to expect people to be better than before, but many of us apparently didn't, which shouldn't be entirely surprising. It takes a long time to totally change a culture, and a lot of people were very happy to revert to the way things were before.
Reverting back to the way things were when life was simpler doesn't make them bad people, it just makes them human.
I’ve had long covid for a couple of years now. It’s a really difficult disease, in part because different people react very differently, and there may even be multiple mechanisms so it’s not exactly a single disease.
What has really helped me has been wearing a nicotine patch occasionally. I was never a smoker, but I came across this very small study [1] and thought it was worth a go because a) I was getting desperate and b) nicotine in such low doses is not that risky (7mg patch, worn for 2 weeks).
I know there’s counter-studies suggesting nicotine doesn’t help with resistance. My experience is anecdotal, but I saw rapid improvement in cognition and fatigue level (particularly post-exercise). My guess is that for some people the particular mechanism behind their long covid is one that this can help with, but not for everyone.
[1] https://pubmed.ncbi.nlm.nih.gov/36650574/
That nicotine patches help with focus is no surprise if you have been naive to nicotine before. I have been using patches on and off (like years of no usage in-between) for focus, and 7mg is actually a lot. Is there anything indicating that it is not just the effect of nicotine, and truly helps against whatever lingers inside your body (the spike protein)?
Given other people around me talking about treating their long covid with nicotine since it went through social media last year, I suppose you don't know about / didn't try the Natto (nattokinase) [1] / NAC route [2] (for which there were early studies showing they can dissolve the SARS-Cov2 spike protein)..? Or does the community consider that a dead end by now?
That there is a political echo chamber-driven division between those routes is a bit strange and dangerous, isn't it. With nicotine you will need to be careful about its effects on blood pressure, and it would be better to not even think about vaping (some of the flavoured products could be equally/more addictive to/than cigarettes [3]).
[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC9458005/
[2] https://pmc.ncbi.nlm.nih.gov/articles/PMC9663386/
[3] https://pubmed.ncbi.nlm.nih.gov/31536738/
Good questions, and I don’t have great answers.
7mg was the weakest patch I could get at a pharmacy (in the UK), and as I understand it that’s the release over 24 hours; I wore them only during the day so it’s a lower dose. If it’s proportional it’s ~5mg, which is 2-3 cigarettes, but cigarettes deliver it much faster, I believe. I have since spoken to a doctor who suggested that if I relapse I should cut them in half to lower the dose. Did you do something like that?
The main reasons I think it had more than just a concentration-enhancing effect are a) the effect after 2 weeks of patches seems to be long-lasting (months, at least) and b) my post-exertional fatigue, which was fairly severe (going for a light jog would leave me partially bedridden for a couple of days) has also gone. But to be fair, if the fatigue is caused by nervous system dysregulation then perhaps that somehow accounts for it, and it’s equally possible both these effects will wear off in time.
I have not seen nattokinase mentioned before, thanks. Interesting that, aside from the effect on the spike protein, it’s also supposed to help prevent blood clots. A friend with long covid was enrolled in a study which treated micro blood clots and she saw significant improvement from that. But I was tested a couple of times for micro blood clots and it came back negative, so again I think the long covid mechanism is not consistent.
I've always bought the flat matrix patches so I could cut them into pieces — worked well for keeping things in limits. If it works for you this is good to hear of course – I wanted to share my2c of skepticism since for above reasons I was suspicious about the hype around it. Btw, if you google a bit deeper you will find a 2020 trial on clinical personell wearing the patches since there were signs it reduces covid infections, so there were early signs that nicotine might help.
As for nattokinase, I'd recommend looking around for diverse real-life experiences (I believe actual studies on long-COVID patients are still lacking). I'm not up to date, but I remember many people went straight for (Amazon-sourced) nattokinase supplements, and for some, it was too much and it made them feel ill.
Otherwise (not sure whether this would deliver the therapeutic dose you might need) natto itself makes a good breakfast — traditionally on rice with a runny egg, but it works as beans on toast too. Good Asian markets carry it in their freezers, imported directly from Japan (buy the versions with soy sauce / mustard). I had it regularly while I was over there, and there’s no difference in taste or effect (comparable to a small dose of aspirin). To the best of my knowledge, deep freezing isn’t an issue with the ingredients.
I think skepticism is really sensible with all of this – if there’s multiple mechanisms and confounding factors this is all going to take a lot more study to tease out. I was skeptical myself, but tried it because the downside risk didn’t seem too high, and I’m very grateful that it worked so well for me personally.
That’s cool – I’ll definitely try adding some natto to my diet!
This is such great news! The best news of my day. She is standing in a brightly lit room and smiling! This is so much better than her condition before.
Keeping my fingers crossed for a quick recovery!
I would say we don't really know if it's so called Long COVID. I mean that I have taken care of an ME/CFS sufferer long before COVID was around. So it's a set of diseases grouped by their similar symptoms. Autism and ADHD seem similar in that regard
Weird gatekeeping but ok; COVID causes chronic fatigue syndrome in some people. Because so many were affected (millions worldwide), it got its own nickname. ME/CFS developed after a covid infection.
Modern understanding of autism / ADHD sees the two as part of a spectrum of neurodiverse conditions (think of an audio mixer of many different traits, more than a side-to-side slider), but I don't see the connection with ME/CFS, whether or not it's caused by a covid infection.
>>COVID causes chronic fatigue syndrome in some people. Because so many were affected (millions worldwide), it got its own nickname.
It already had a name - post-viral fatigue syndrome. It's happened after other viruses before.
> Weird gatekeeping but ok; COVID causes chronic fatigue syndrome in some people. Because so many were affected (millions worldwide), it got its own nickname. ME/CFS developed after a covid infection.
ME/CFS has been around for way longer - prior to Covid, the Epstein-Barr virus was strongly suspected to be a trigger for it. Unfortunately ME/CFS was (and in many cases still isn't) widely known among doctors, so diagnoses were hard to come by and treatment even harder.
At least now that there is money flowing into ME/CFS research and knowledge about it gets more widespread, "old time" ME/CFS sufferers have a perspective now...
The "so called Long COVID" really just means "I got covid and I remain unwell in some way, long term". I'm not sure it needs to be questioned if those two qualifying things are given. Very well might be the same thing as ME/CFS, or might not, I don't think we have a conclusive answer yet about what causes either.
"Long COVID" encompasses several very distinct nosological categories, which makes it a difficult term to talk about. There are at least four distinct subtypes - people who had severe acute illness and suffered respiratory injury, people who had severe acute illness and suffered cardiovascular or renal injury, people who had a relatively mild acute illness but developed long-term neurological or musculoskeletal sequelae, and people who developed those latter symptoms during the COVID pandemic without actually being infected with COVID. All of those types of suffering are very real, but may have very different causes and require different treatments.
Without knowingly being infected with COVID is probably a better way to phrase that.
https://journals.asm.org/doi/10.1128/spectrum.02537-22
> The final study population comprised 341 participants (90.6% females) who completed blood sampling and answered the questionnaire. A total of 232 (68%) were seropositive
How does this compare to the base rate in a similar population? Two thirds sounds like a reasonable estimate for "ever had COVID" in Denmark in 2022, though maybe a smaller percentage would in fact be seropositive. It would be interesting if self-reported long COVID had little or no correlation with having had COVID at all.
note that this is 'self reported long covid'. For a proper study you'd need an objective measure otherwise it can't be determined what might be long covid vs. fatigue from working late hours at work, changes in mood due to season, changes due to age etc.
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Doesn’t the Bible specifically mention against this line of thinking?
Probably but that doesn't stop people from selectively reading or twisting the Bible to serve their own ends, bringing the weight of God behind their own desires and goals. They know most believers never actually read their own holy book on their own much less with a critical eye to how well it matches what they're being told.
Reading utopic rulebooks - the intent is of no value. What is of value, is the reproduceable outcome of the rule-book interacting with actual humans, not idealized or demonized concepts.
I believe they might be facetious.
… along with mental/emotional disorders being a character fault.
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It's not that it sucks to have this brought up, it's that the people who do are pretty consistently dismissive and infantilising about it. Naturally, folks that this happens to develop an aversion to people that say the same thing for the millionth time. It's not novel, it's not interesting (in that it never leads anywhere novel either) and it's frequently hostile.
If anything I feel like it’s actually more interesting if it’s a psychiatric condition.
Does someone’s visceral sense of having control of their own life being detonated have an impact on their body? Probably? What if they have been conditioned to act like they are not bothered by this aspect of the situation, and therefore don’t process this feeling and it remains unresolved. That is like the definition of trauma.
The bigger problem is that nothing seems to be "interesting", in the sense that nothing leads anywhere with this disorder - no test, and no treatment.
Yeah a relative of mine had it decades before Covid.
A better term may be "Long Virus" since multiple viruses can trigger it, Covid just happens to be the most recent pandemic.
Eh, the advantage of "long Covid" is that syndromes are clusters of symptoms without a known underlying cause. "Long Covid" may give ME/CFS symptoms, but if you solicit 100 Long Covid sufferers for a study, you are more likely to be able to find underlying similarities than for 100 ME/CFS suffers.
The results would potentially scale to some sunset of ME/CFS suffers neho never had Covid, but it makes sense to start with the group we at least have a common starting point on the cause.
That's what I am wondering, is it the right cluster?
Some long covid symptoms are nothing like ME/CFS such as a persistant loss of taste and smell. And there are people with ME/CFS who never had covid.
Anyways, I am sure that research goes both way, that is, studying the consequences of covid and the causes of ME/CFS. "meet in the middle" can be a good exploration strategy.
The symptoms may be very different but the causes may be similar: permanent damage to tissues and organs which the body is unable to heal over time.
Mono (Epstein–Barr) can as well cause prolonged (many months and even years) illness.
> Autism and ADHD seem similar in that regard
Do you go around telling people "I would say we don't really know if your kid has so-called Autism" too?
I think the point being made was diseases can be difficult to diagnose. Some diseases don’t have explicit tests.
ADHD is diagnosed by looking at just symptoms if I remember correctly. I’m not sure about autism.
I knew someone who became sick. At first it was thought to be Lyme, it took a long while to determine and a bunch of other theories to determine it was lupus. Tests were not fully accurate and these illnesses manifest a little differently in different people.
Autism diagnosis requires (or at least should, for it to be done properly) a multidisciplinary evaluation.
In the case of my children, there were certain tests that were absolutely definitive, and not reliant on interpretation - namely, idioms and metaphors. It's raining cats and dogs, for example.
Right, but that specific sign still doesn't give definitive info about all the other aspects of autism. Ignoring the name you give "literal-lnaguahe syndrome" , it is unknown if the menu of signs and symptoms is diagnostically clustered in imto one label in an effective way.
I am not objecting to the general point that diseases are hard to diagnose. The wording OP used does not just say that - phrases like "so-called" come with an implication that the thing being referred to is just made up. That's why my comment asks if they would say the same thing about ADHD and Autism. They probably wouldn't, because it would carry an implication that they thought ADHD and Autism were somehow "fake".
ADHD and Autism are interesting, because they are entirely based on certain clinical presentations and the opinion of the diagnosing practitioner. There are a certain set of traits that are "classically" ADHD for example, so what happens if you show 80% of those traits and show the counter-case for 20% of the traits? I expect that neurodivergence is going to become far more nuanced in its assessment, with a better understanding of an individual's whole psychological profile.
Most of mental health is like this.
In the Cincinnati area they throw up their hands if you are over the age of 12 and suspect ADHD. There is little to no help if you are an adult or close to it.
You can literally see ADHD in a brain scan, especially if you contrast it with after someone has taken the proper medication for it. This isn't some sort of witchcraft, it's a physical thing that's measurable.
That's not how you get diagnosed however, nor do I know if you would receive a diagnosis of adhd when a brain scan shows behavior similar to that of ADHD but you show no symptoms and aren't seeking a diagnosis. If you go in for an ADHD evaluation you typically get a psychological assessment, potentially do some tests which aren't always conclusive and your symptoms will be evaluated. In that sense, it's not really measurable in the same way that we can test for a specific disease, infection or virus.
It's not a strict relationship as far as I understand though. As in, frontal lobe issues are visible on many brain scans, but those brain scans are not specific enough to map onto ADHD diagnosis. So we don't have a good diagnostic test right now even though we have many population-level confirmed differences that we can run tests and statistics on.
In some cases we don't really know if your kid has autism. Under the DSM-5 criteria there are three levels of autism spectrum disorder: 1, 2, 3. Down at the less severe end of the spectrum, clinicians often assign different diagnoses. One psychiatrist might diagnose a patient with ASD Level 1, and then the next day a different psychiatrist might say that the same patient doesn't have ASD at all and actually suffers from ADHD or something else. It's highly subjective and reproducibility is low.
https://peterattiamd.com/trennasutcliffe/
At the more severe end of the spectrum, diagnoses tend to be more objective and consistent.
I mention elsewhere that I am not objecting to the general point that diseases are hard to diagnose. The wording OP used does not just say that - phrases like "so-called" come with an implication that the thing being referred to is just made up. That's why my comment asks if they would say the same thing about ADHD and Autism. They probably wouldn't, because it would carry an implication that they thought ADHD and Autism were somehow "fake".
I’m following her progress on Patreon and the fact that she’s getting better is great! Can’t wait her comeback video!
I find it interesting that she's both kept her Patreon up during this time and has also become far more successful https://graphtreon.com/creator/physicsgirl, in spite of posting no content.
So patreon essentially acts as a health insurance and long term disability plan? I am unsure of “estimate earnings per month” accuracy given the wide range — “12K-147K” — but even at the low end that should be enough to get constantly seek treatments (traditional and non-orthodox) and still provide for basic necessities (food, rent, bills, …). American health system is a joke.
Glad she’s making progress and has a very supportive partner. Not sure what he does for a living but seems like he has been the primary care giver throughout this.
> American health system is a joke.
I don't disagree, but having some kind of medical situation isn't a prerequisite for gaming the Patreon system. I used to be a monthly patreon subscriber to someone years ago who put out weekly asmr videos. One day they just stopped cold turkey with no announcement, yet years later their Patreon is still up and still taking monthly donations.
Patreon fundamentally is a way to support your favorite artist.Be a PATRON of the arts. Some(most?) creators use it as an ad-hoc subscription method but it really isn't what Patreon is fundamentally built for.
if you're complaining about subscriptions that go into perpetuity your first target should be app stores that set up 10 year recurring payments in the biggest chunk possible for something you'll probably use for a couple of months before forgetting about.
This is honestly shocking and I don't know how to process this information.
Why is that shocking? Her existing subscribers continued to support her, but also multiple other famous youtubers talked about her which got her new attention/subscribers. I've seen at least 3 other channels giving her a dedicated video and YouTube is still serving me her shorts.
Subscriber is the technical term but really it's donor, because they aren't paying for access to new work product.
Most people who suffer a GoFundMe-type catastrophe don't attract new long-term financial backers over time.
I'm not saying it's a grift, but I'm not saying I'd be surprised if it turned out to be one as well.
Internet people are weird. Not all of us though, obviously.
https://en.wikipedia.org/wiki/Belle_Gibson
Is it really a grift if the person is upfront about asking for money to pay their medical bills and there's no expectation of a product that isn't being delivered? GoFundMe isn't pretending that there's a laptop or shoes or something expensive and then not delivering aka a scam, it's straightforwardsly asking for money to pay for medical bills.
I meant "grift" in the sense of the illness could be not real or exaggerated.
What’s more “shocking” is how these services (patreon,gofundme) essentially acts as long term disability and health insurance plans.
American healthcare is a massive price fixing scam and a complete joke.
So great to see and hear. I honestly did not think this was going to improve and expected the worst. Very glad to see otherwise.
Unfortunately I experienced a similar thing though much milder and shorter last summer.
Hope we can figure out viruses better soon!
For the sake of society, let's hope it's "let's figure out how to defend against viruses soon" and not "let's figure out how to make more fun gain-of-function viruses!"
I have been burnt out for almost three years now, was mostly bedridden at first but I can do much more now. I can do moderate training 1-2 times a week, go out to get socialization 1-2 times a week and do much more at home. So it have gotten better, just a very slow pace and it's really hard. You have to learn to know when you have to rest and when to push yourself and that line can be super thin. Not good to do too much and not too little, very hard to read signals imo.
Hopefully we will see more breakthrough in understanding and reading the signals of the body in the future
What was wrong with her? Some type of long Covid or something?
Yes, Wikipedia: In July 2022, Cowern reported that she had developed long COVID. She was hospitalized in March 2023, as her symptoms similar to myalgic encephalomyelitis/chronic fatigue syndrome continued to worsen, leaving her unable to move
I'm seeing the abbreviation ME/CFS in a lot of comments and didn't know what it means, but... I'll take the abbreviation over "myalgic encephalomyelitis"!
https://youtu.be/vydgkCCXbTA?si=bIOBVn1wAsgPVLLr
yeap long covid
Severe ME/CFS. I am a carer for my wife who has this forgotten & hidden disease.
I am so glad Physics Girl is getting better with rest!
The state of all things Me/CFS is so bad. I remember reading about cases as a child in some boulevard or women’s magazine at my grandmas house, so it must have been about 25 years ago. Seemingly nothing happened since then.
Even the explosion of cases after Covid hit somehow doesn’t lead to change. In Germany many doctors still don’t know it, a lot of them think it’s psychological.
There is some research, but it looks like the study of the promising compound „BC007“ got botched by bad study design, so even after some very promising results in some participants it is likely to get scrapped.
„Hidden disease“ fits it so well, because the people affected „just disappear“, too weak advocating for themselves and with potentially every activity leading to a crash.
I’ve had a family member (Aunt) who’s been diagnosed with CFS since the early 90s whos now in their 60s
There is some good research into anti-virals for treatment. And this has been known for at least a decade. A challenge js few doctors will prescribe the course.
Anecdotally in the late 00s early 10s my Aunt was losing mobility due to CFS causing neurodegeneration. It was at the point she would sometimes crawl rather than walk up a flight of stairs.
Her and I flew to a specialist to get prescribed a cocktail of anti virals (most used for AIDS) and the results were more than a placebo.
Within a year the degeneration didn’t just stop but reversed. Its not a cure for her but it allowed her to reverse enough to have a high quality of life and mobility. Over time she’s progressed back down but who's to say if thats age or condition.
Here’s a link that discusses it, but a search for cfs and antiviruals will return cfs community material and journals.
https://massmecfs.org/more-resources-for-me-cfs/247-antivira...
> a lot of them think it’s psychological.
no worse feeling in the world than hearing a doctor confidently tell you that it's all in your head and that you're wasting their time. Ask me how I know..
it's wild to me, because ME/CFS can, in rare cases, be terminal. autopsy reveals various findings: inflammation of the dorsal root ganglion, degeneration of the frontal lobe, metabolic issues and tangles of proteins in neurons and glia.
RIP to the author of "The Sleepy Girl's Guide to SSDI", who died young to ME/CFS, attributed to neuroinflammation in her autopsy.
Nocebos, the opposite of placebos, are extremely interesting. [1] The thing most people don't appreciate about placebos (and nocebos) is that the effect isn't just 'in your head.' It actually physically manifests - people can e.g. recover from illnesses measurably more quickly with placebos.
And the opposite is true of nocebos. So for instance one of the most common examples of nocebos is somebody will be given a terminal cancer diagnosis but then die long before the cancer could have been the cause of their death. They're so convinced that they're dying imminently that it becomes a self fulfilling prophecy. I expect a similar phenomena is why elderly couples tend to follow each other into the grave in short order. Dying of heart break or loneliness is not necessarily just rhetorical.
Basically, the mind is extremely powerful.
[1] - https://en.wikipedia.org/wiki/Nocebo
"Are you bleeding?"
"No."
"It's probably stress, then."
if only we could objectively (and easily) measure pain and energy levels (feeling tired) and even stress. stress is used here as a dismissal (not by you but the hypothetical doctor you are parodying) but stress too is a real health factor that people need help with.
Nobel Laureate Barry Marshall (co discoverer of Helicobacter Pylori, cause of stomach ulcers) gave a talk to a graduating class at the university he went to (can't find link, but it's on the net somewhere). He talks about "stress" being a fertile area of research for medical advances. His argument is that stress is rarely the direct cause of anything. It might be a secondary cause, or it might be a symptom, but research into ailments currently attributed to "stress" is a really good direction for the aspiring young medical research scientists out there.
Yeah, sorry, that wasn't meant to be dismissive of stress or burnout. There's probably a reason doctors always ask about it, but it can be an annoying to have to talk about your job when you've got physical symptoms.
(As a sidenote, why do doctors always assume stress is work related? Work is fine, but have you looked at the world...)
that wasn't meant to be dismissive of stress or burnout
just to be clear, i knew it wasn't.
why do doctors always assume stress is work related? Work is fine, but have you looked at the world
oh absolutely so much. i hide in my work when i have stress at home. i can think of two factors. as far as the world is going, most people don't care enough about it to let that stress them, so they do't even see it. myself i avoid stress from world affairs by actively working on making things better (within my means, by showing my friends and neighbors that there is hope yet for the future). but there is also stress at home, and that seems to be also overlooked. i think the reason here is that the doctors are not trained to deal with that and also don't want you to come to them to handle your family problems. there are other trained professionals for that. though personally it would really be nice if we had a family doctor who not only deals with physical but also mental health.
A hole is just a sign of excessive stress on your skin.
Doctors used to believe allergy is psychological.
I think there are no actual psychological diseases. All have underlying physical causes.
I agree with this, as a monist. Unfortunately medicine is still very much in its infancy in this regard - many things are too subtle or just still hidden.
>Unfortunately medicine is still very much in its infancy
It's always the people involved. People are very resistant to change and prefer to hang on to the status quo.
I fully agree with you.
It seems it is not just rest but that she had some procedure done as well. https://youtube.com/shorts/ndhu7uo3PrI?si=pPzpDk4lLw3eRf0j
Indeed she was not apparently getting much better until she got the nerve block procedure a few months ago.
It seems no doctor takes it seriously still: just you being a whiner and get over it. My mother had it in the 80s and it was really not a thing; must see a shrink, she did, didn't help of course etc etc. Never got any help besides 'well, just rest and don't worry too much'.
I am in the process of recovering from CFS (currently back to working 100%, though still not being where I want to be with everything else) and at no point my doctor has done anything but take it seriously. Of course, a doctor can only do so much with a disease as nebulous as this, but he (as well as work, family and other people around me) giving me breathing space and adapting to my situation has been crucial for my improvement, I'm pretty sure.
Good to hear, several people around me did not have that experience with covid, but sure there must be good doctors.
It is, in general, a poorly understood disease (as lots of others in the thread are pointing out). And everybody's case is different.
I will point out that I've never gotten so much unsolicited low-quality advice before, though; people who barely know me will make a very confident diagnosis on-the-spot once they hear I've got a long-term illness. E.g., “you're vitamin D deficient” (no, I'm not, and anyways, I've been taking vitamin D supplements for three months just in case, with no effect). I'm sure they mean well, but it becomes tiring really fast when everyone does it. (There's a select few people who seem to be much more careful about throwing our random crap like that, including, unsurprisingly, all the doctors I know.)
I think it has more to do with the doctor thinking about the absolute nightmare they are going to have to deal with interfacing with insurance companies trying to treat you. The dismissal is just their self preservation.
I have noticed that a lot of their job is playing insurance games to treat (get past preauthorizations) easily documented health issues, let alone things like ME/CFS or long COVID.
That’s a US-specific problem. Doctors dismiss patients’ complaints all the time in countries with universal healthcare.
I think the issue is much simpler than that: if the doctor is out of ideas (and doesn’t know of a specialist to refer to) they just get frustrated and give up.
Yeah, ME/CFS in the extreme.
Since it hasn't been mentioned yet, I had two debilitating flare ups of EBV (Epstein Barr Virus) post covid. It's commonly latent (apparently 90% of humans carry it) and will opportunistically flare up when the immune system is compromised. It commonly causes mono in teenagers, but more generally will cause crushing fatigue and related symptoms. There are no known cures, but plenty of things you can do to support the immune system. It can be detected with a blood test. If you think you have long covid, get an EBV test - might help.
my heart skipped a beat reading her name, thought something untoward happened but good to see she is back on her feet, literally. I donated a couple of bucks when that video of her illness came out. Very happy to see she is better now.
Long Covid (probably a form of ME/CFS triggered by Covid) is one of the worse diseases one can get. It invalidates you as a person physically and mentally and there are no solutions around. At the same time you are gaslighted by doctors and people because there is no clear diagnosis.
My wife is already on her 3rd year and I just could witness first hand how shallow is the knowledge of most doctors, how they have zero curiosity or enthusiasm to help and especially in Europe, how are they extremely averse to try anything with the "do not harm" in mind.
They think that doing nothing is better than trying a non-approved treatment and I'll put an example. My wife had a respiratory tract infection back in October which probably got while going to the GP by the way. With Long Covid her immune system seems very compromised, she never leaves home if it's not imperative because even with a wheelchair is too much effort. I don't attend almost any social event and I take a lot of precautions. Anyway, with the infection she was coughing blood for 3 days and then she was unable to breath properly, having drops of oxygen saturation down to 86% and waking up breathless in the middle of the night.
She documented her symptoms very well including her saturation measurements. The GP just told her to wait for a few weeks for full recovery and everything will be back to normal and he literally said he had no time to read her notes. She asked please to get an oxygen concentrator or at least be sent to a pulmonologist. This request was denied and of course the only option she had was to buy the concentrator on her own which helped a ton. Probably if she got it the 1st year she would be much better by now.
She is taking like 10 supplements and medications, she is using infrared light, oxygen concentrator, wheelchair, special pillows, asthma inhaler, etc... All this helps her to have a bearable existence but guess what, not a single thing was proposed and prescribed by the doctors. Almost everything she takes is based on small studies from internet and experiences from patients. Mostly from the USA where doctors are much more open minded and willing to take risks which is necessary when your default baseline is almost like being a tetraplegic with dementia and chronic pain.
She has to get pretty harmless drugs like Sulodexide (a blood thinner) from other countries in a shady way because the Doctors in the Netherlands won't even prescribe this.
There is some progress in diagnosis or biomarkers detection and some promising studies for cures like monoclonal antibodies, antivirals and others. But meanwhile it's a pure nightmare to live with Long Covid.
I was halfway through your comment and wondered which country this would be. Well, hello fellow Dutchie.
Since my father's death, I say In the Netherlands, doctors only start acting when you are dying.
My father's GP let him die of acute leukemia, guessing his severe tiredness had something to do with an onset of diabetes. It was not a single visit. Had no bloodwork done. GP claimed to be specialized in geriatrics. My father was 63.
About a day after his last visit my mom took him to the ER, which did bloodwork, and a couple of days later he died ( they tried an emergency chemo ).
I'm very sorry to hear that your father died a preventable death.
I'm currently in a Dutch hospital, recovering from an (attmpted, they ended up leaving it inside me, can't fully explain why) appendectomy. From calling the after hours huisarts number with a stomach ache to being on the operating table was less than 24 hours for me. The hospital stay have been amazing and I doubt I would have had such prompt treatment back in Canada.
But I have also had to argue with the receptionist for over 10 minutes to be able to speak with my GP here for a consult after I paid for private bloodwork with two critical results and 6 out of normal range... So I feel like it's down to luck here when they decide to take things seriously.
I don't know what happened in your case but the standard of care for simple appendicitis is now to try a course of antibiotics first before a surgical appendectomy.
https://www.facs.org/media-center/press-releases/2021/coda-s...
I'm currently on a course of antibiotics. They said the tissue around the appendix was to infected and they were scared they would rip it and damage something. They are giving me the option to have the appendectomy after I successfully recover with antibiotics but advise against it. I wish we had started with the antibiotics but here we are now.
> In the Netherlands, doctors only start acting when you are dying.
this horrible situation is in no way restricted to the Netherlands.
There is obviously whole medical system for cash paying upper class. That’s why I am trying to have some cash on hand for medical emergency. Few thousand euros can make a difference of 50 years in treatment methods here in Germany. The outcome may be massively better this way. Sadly I learned this lesson the hard way.
This is what pisses me off about public medicine. If you're going to provide a service that's so bad I have to save for a private doctor anyway, why in the hell am I paying so much in taxes towards it? Out of the goodness of my heart for others (so they can also receive shitty care)?
And yeah the dying comment is 100% true for Denmark too. The doctors have no clue about what preventative treatment is and will just let it fester into something more serious they're forced to treat - diabetes is a huge example of this.
From personal experience, I was left waiting for a testicular cancer biopsy for over a year. After the operation I found out if I did have cancer there was a high chance the biopsy would've caused it to progress much more rapidly (as opposed to other methods of checking). So great you let the cancer grow in my nuts for a year, and then you make it more aggressive? wtf?? Thankfully I was diagnosed cancer free.
Yep, same in slovenia.
We pay a lot of taxes for healthcare insurance, and the primary level of healthcare is totally fscked. When the employer has to deduct the insurance from your paycheck, even goddamn cent is double checked by the government... when your primary care physician quits/dies/retires, well, "sorry, there are no doctors taking new patients in your area". Further away? Nope. Somewhere finally a new doctor starts and accepts new patients... this: https://images.24ur.com/media/images/1106xX/Sep2024/5916255a... (yes, this is the line of people without a primary doctor trying to get one).
So, fever, general unwell feeling... could be a flu.. could be bacterial.. probably just a flu.. or a cold... it's always just a cold.. but are you sure? You could go to a private doctor, pay for the checkup, pay for the blood work, but will you pay if it's probaby just a cold/flu?
Feeling really bad and also start vomiting + diarrhea? Go to the only place where you can get checked out fast... the emergency room... and then emergency protocols have to be implemented there, because there are too many people there, and they can't handle it.
Hopefully, the growing research into biomarkers and experimental treatments will lead to real change soon
that is a horrible way to be treated by a doctor. In Germany you have free choice of your doctors. Although sometimes you have to wait quite a bit to get appointments... I am not sure, but with a a European health insurance card you should be able to also go to doctors in other countries and be at least partially covered by your insurance.
GPs here are just absolutely useless. Have you tried reaching out to one of the specialized clinics? I've been under treatment for ME/CFS at Vermoeidheidkliniek (yeah, not the best name) and all of the specialists there have been incredibly helpful and willing to try different things.
They don't have very good reviews in Google but I can give it a try. My wife is in the queue for the new "Long Covid Clinics" but who knows when there will be room... they opened in November and we didn't hear anything else since then.
Another Dutchie here.
Anything not immediately fatal is indeed treated by just taking it easy and perhaps some paracetamol for the placebo effect.
I have a chronic illness in the same kind of category and it took me years to find out what it was and to get proper treatment. Which has improved my quality of life dramatically!
But even now I travel halfway across the country to a university hospital where a specialist takes me seriously, the GP is still a bit 'meh whatever'. I'm fairly sure he put a "psychosomatic/hypochondriac" flag on my file and never removed it when the specialists diagnosed me.
Our healthcare system has overcorrected on what they dismiss as 'aanstellerij' en 'Amerikaanse toestanden' and many in the field are actually quite proud of this.
Are you sure you aren’t in the US?
I find specialists here have zero intellectual curiosity. Sure, they recognize the most common condition in their field when blatantly obvious.
When it comes to the second most common issue in their field or anything not blatantly obvious (significant test result and 10/10 excruciating pain), they will just offer no diagnosis and go no further.
Just getting them to do an exam or even order a test is a huge challenge…
It seems to depend on who you see and, probably, where you are in the country. Every time I go in to see my GP he seems to schedule a battery off lab work. And when I went to a dermatologist for an annual mole exam I left with prescriptions for dandruff and eczema.
The first one I saw was like that. But I went for a Second Opinion, as is my right, and it was a world of difference.
Did she get on the unprescribed Sulodexide before coughing up blood? That could have caused it.
model for the infrared light ?
Here is a site with a lot of long covid recovery stories:
https://www.longcovidcured.com/
Love her content, hope she recovers fully soon!
I've been following her and rooting for her along with thousands of others, and reading this just now made me smile and tear up a little. I'm so happy for her!
Really happy for her. Any details about what resulted in this breakthrough? Checked the video comments / description but didn't see anything.
Big fan here, just came to say Happy Physicsing :) and get well soon Diana :). Also happy to see her being discussed on HN.
I have neurological abd muscular issues after covid
Terry Davis would be pleased.
I'm also experiencing mild but annoying symptoms resembling arthritis and chronic fatigue since my corona vaccinations (biontech/pfizer).
Fully armed spikes (or it's pieces) which are multifunction weapon with unknown mechanisms and side effects.. as a remedy ? - it's like fighting a fire with a fire - but there _was_ some advise to avoid physical activity after vaccination as it could keep that fire only in the muscle - ignoring that more or less of the vaccine will be moved with the blood and do random unknown damage anyway.. to be studied later what maybe could be avoided, "saving" on costs of that half baked experiment needed to make a way to use of "newer, better" vaccines :/
We already had deeply insightful discussions on this topic here, but I will repeat for new HN people.
Covid-19 tends to cause post-viral complications, which manifest themselves as chronic fatigue, body temperature dysregulation, air hunger / shortness of breath with SpO2 of 99%, various neurological symptoms: pain/tingling/numbing sensations in the extremities, parosmia (a distorted sense of smell), parageusia (a distorted sense of taste), difficulties swallowing, cognitive decline.
According to numerous trials and errors by different people, it was collectively concluded that the condition is caused by some kind of metabolic impairment that presumably affects the ability of mitochondria to produce the adequate levels of ATP. As a direct consequence of that insufficiency, the immune system gets activated and starts to attack body's own tissues. When this happens, the blood vessels start to develop micro-clotting, causing blood flow problems that exacerbate metabolic issues even further. Additional tell signs are increased HOMA-IR and/or triglycerides in the blood work, suggesting that cells of the body cannot utilize the nutrient substrates in full.
This represents a vicious cycle of a typical post-Covid pathology. The good news is that it can be treated and healed. The bad news is that it may take some time (months, years) and will power, while medical workers around the corner have no clue. The core of therapy consists of a light immunosuppression in conjunction with therapeutical doses of specific vitamins and vitamin-like substances, all being supported with minerals, vitamin-rich diet, good rest, good sleep, mild physical and mental activities every day.
For those people who still suffering from it, I am putting a link to a site [0] that aggregates some first-hand evidences and research information. A usual note of caution is that every situation is different and you should consult your doctor.
[0] https://hormonesmatter.com/?s=covid
Edit: "collectively concluded" is used in the sense that post-covid suffers were able to gain observable improvements in their condition being "a collective of people" suffering from post-covid.
There has been no such collective conclusion. It could be correct and there are several viable hypotheses in there worthy of further research but nothing that meets the standards of evidence-based medicine.
Survival comes first, while evidence-based, official, one-size-fits-all approvals do not come into existence until a large enough statistical samples are collected. Chicken and egg dilemma of its own.
P.S. People are preparing for WW III with a far greater enthusiasm now, imho. Which is sad.
Not a doctor.
I've struggled with fatigue, memory issues, and brain fog since having covid.
Biggest game changer for me has been supplementing NMN in the morning, NAD in the morning and afternoon. Both work to support ATP levels.
With this I've been able to get back to gym in the morning and still work through the day with no sleepiness.
I've read that certain people can't convert NMN to NAD very well and the accumulation of NMN can actually result in serious neurological issues. Seems to be working fine for you, but I would caution people here to do their research before using any supplements. Some of them can be very harmful, especially in early stages where they haven't been properly studied.
Thanks, I didn’t realize this was possible. Will take a look into it.
> ...the condition is caused by some kind of metabolic impairment that presumably affects the ability of mitochondria to produce the adequate levels of ATP. As a direct consequence of that insufficiency, the immune system gets activated and starts to attack body's own tissues.
Why would the metabolic impairment cause the immune system to get activated? Also do tests show which immune cells get activated? Are there existing medications that can moderate those immune cells that might work?
Some people have high levels of COVID-19 spike protein, long after main infection is gone. There is very easy way to test for it.
Some retroviruses like HIV are able to modify DNA, and embed themselves into cells permanently. Perhaps COVID-19 is doing something similar! It would be nice to do DNA scan, for sequences that produce spike proteins, on people with long COVID symptoms!
Coronaviruses are RNA based and do not carry the reverse-transcriptase proteins (as retroviruses like HIV do) which would be necessary to embed genetic material in host cells' DNA. They directly cause production of the proteins to copy their RNA into new virus capsids.
Perhaps it is a new variant.
Proteins like reverse-transcriptase are quite complex, it’s not a mutation that would appear so suddenly. Also, having such a protein would significantly change how the virus operates, and it would be visible upon sequencing it.
I am way outside my area of expertise and speculating wildly here, but aren't various retroviruses quite common in our environment? Enough so that many COVID-19 infections must have occurred simultaneously with one of many such viruses?
So, logically, COVID-19 viral components likely have coexisted inside our bodies with some quantity of reverse transcriptase, no?
I do know that we find viral DNA in human DNA, likely as a result of past retroviral activity. I wonder if we ever find sequences from non-retroviruses that have hitched a ride so to speak.
Virus genes aren't like lego pieces that just snap together and work. Genetics is a very delicate balance. Retroviral RNA evolved to be packaged up in such a way that it's ready to be transcribed by the reverse transcriptase. Coronaviruses didn't do this.
If this was actually what was happening then we'd expect to either see:
* (if it utilizes a present retroviral reverse transcriptase) only people with active retrovirus infections getting long COVID
* (if a variant picked up the gene from another retrovirus) evidence for reverse transcriptase being copied into a widely circulating variant that for some reason is only activated in some people
We don't see either of these things happening. It would be extremely obvious from the data and genetic samples that that happened. There's also generally very little evidence for viruses picking up features across long genetic distances. If this was common we'd see more of it.
SARS-CoV-2 also generally infects different types of cells than the ones that HIV does, so even if that was a possibility genetically, it's unlikely because they're not active in the same cells.
Yep, something like spike protein that is more persistent than usual may provoke an inadequate immune response in the body, which is known to cause clotting, which is known to cause tissue hypoxia, which, in turn, is known to induce a mitochondrial dysfunction, starting the vicious cycle of pathology.
Chicken and Egg dilemma. We have a lot to discover and formalize. I do not say that you are not right, your suggestion is plausible, we have to find out.
Sadly long-covid research is very underfunded. Doing a few thousand DNA tests is not that expensive.
Covid-19 is not a retrovirus. Otherwise, the people would not be able to reliably overcome it again and again. The same applies to post-covid - once you tame it by finding methods of correcting it, it goes away. I agree with you on necessity of further researches, but they require not only money, but also plenty of time, decades perhaps.
> reliably overcome it again and again
I would disagree with that. We are only a few years in, many people did not recover yet. And taking severe medication is not exactly "correction".
There is a research that suggest some unusual COVID-19 variants are able to penetrate cell nucleus. That is why we need DNA sequencing studies! And not just on patients, but their microbiome as well!
And I do not think it will take decades, but couple of years maybe months!
This might be an ignorant question, but are these therapies likely to help chronic fatigue that predates Covid-19?
Long covid, and CFS, are almost certainly the same disease. The person you're replying to is massively overselling the efficacy of treatment though, most people with this kind of fatigue tend to improve to a lower level of functioning than before their fatigue. Nobody has much idea of what the underlying disease is, and there's no evidence that you can cure it with any treatment
If you talk about ME/CFS, then it is known to be helpful in some specific cases, but not universally. People with ME/CFS tend to be driven by autoimmunity as a primal factor of the disease.
There is a clear problem of diagnosis and intersection of the symptoms. What we call ME/CFS today may be several distinct diseases with overlapping symptoms.
To give you a direct answer: it helps with chronic fatigue, but only if one of the causes of the illness has a metabolic impairment component in it. Otherwise, no improvements are observed.
I've read about long COVID and the hallmarks but it seems like Dianna is experiencing something far worse than average. Chronic fatigue is one thing but unable to stand for two years is horrendous. Are there any other recorded cases this severe?
To further this, is "long COVID" actually something we can definitively diagnose? Clearly something is going on with Dianna, but if the symptoms or severity don't match other long COVID cases perhaps there is something else going on there.
Usual blood work panel tends to be excellent for post covid suffers. So no widely available diagnostic abilities so far, except looking for hallmark symptoms and trying to get slightest hints from the blood work variations.
Potentially, for mild and heavy forms of post-covid, measuring blood lactate and bicarbonate levels may be helpful [0]. But nobody seems to care enough to follow up with organized evaluations to introduce it into general practice.
[0] https://pmc.ncbi.nlm.nih.gov/articles/PMC10140510/
I am not aware about anyone being hit harder than Dianna by post-covid. Her case is extreme.
While she is gaining her power back, there is still a considerable probability of acquiring dementia for her, she is in the grey zone now.
And note, we read only what meets the eye. Below that line, there were extreme panic attacks (crashes) with a sense of imminent death. I think that in many cases, the death by itself is more peaceful than 100x repetitions of the associated experiences.
Panic attacks are usually treated as a psychological phenomenon, but in case of post-covid they have metabolic nature. Tiny parts of body tissues literally die out of energy starvation. It applies to energy-hungry organs first, brain, nervous system, heart, liver, muscles. The heavy cases of post covid is like being a zombie who is still alive, but with tissue hypoxia and consequential tiny necrotic spots hidden inside under a healthy rosy skin.
Is any of that last paragraph actually real? Are these tiny dead parts of the body so tiny that we can't actually observe them or something?
Take a look at Fig. 1 here [0]. That image was taken using muscle biopsy from someone suffering from a metabolic condition.
We can clearly see and observe affected spots in tissues using direct material extraction (biopsy). However, not all parts of the body are easily reachable using that method without causing more harm to a living organism. The effect is also observable using CT scanning (way less conclusive).
So the last paragraph is quite real, unfortunately. I presume that a tiny part of the brain/nervous system dies when you have a metabolic panic attack, because there is a pronounced cognitive decline after each such attack.
[0] https://www.elsevier.es/en-revista-medicina-clinica-english-...
I’m going to ask, not because I have an agenda but because I’m genuinely ignorant but curious: I see a lot of people mentioning things like mitochondria and spike proteins; can any of this be caused by the virus OR the vaccine? or just the whole virus? Thanks!
Just the whole virus.
Let's imagine for a moment that the antigen produced by the vaccine was the exact one that does cause all of these symptoms. Even in this hypothetical world, only the whole virus can cause long term symptoms, because only it can replicate itself and persist.
The vaccine expresses itself once, and is gone. All that's left after a few days is the immune system's memory, no different than any other antigen.
There is no mechanism for the body to chronically begin to create vaccine spike proteins after receiving the vaccine.
There is however a mechanism for the body to attribute any random real or imagined symptom to something they heard about and think sounds right.
Any virus and any vaccine can extremely rarely cause a post-viral malaise with similar symptoms. But Covid-19 (as a virus) stands out in terms of frequency of these occurrences moving the needle from "extremely rarely (~never)" to "occasionally (~it happens with my friends and family)".
In terms of outcomes and probabilities, having a vaccine is 10000x better than facing a virus directly. Note that in some rare cases, the burden of certain chronical health conditions may overweight the benefits of a vaccine, so it is always better to consult to a doctor who knows you well.
Personal anecdotes: I do not know anyone who developed a post-covid condition after being vaccinated, but I know plenty of people who developed a post-covid after covid. I knew people who died from covid not being vaccinated.
There is a tiny handful of people that developed adverse reactions to just the vaccine and it's dishonest to pretend those cases didn't happen just because dumbfucks are going to hear that story and use that as an excuse to not get the vaccine
The question here is specifically about chronic, long-term, Long-Covid-like adverse reactions.
The vaccine certainly has occasionally caused immediate, acute issues with people, which is why you aren't supposed to leave the administration site for 15 minutes after you get it.
But there are not chronic adverse reactions to the vaccines.
there have been. we really don't talk about those.
Source: "It's a secret, trust me bro"
> I see a lot of people mentioning things like mitochondria and spike proteins; can any of this be caused by the virus OR the vaccine?
Ask the people who never had the vaccine. There are not many in that category though.
With vaccine it depends on type and batch. It took some time to refine manufacturing process, quality varies a bit, and some batches were pulled out.
If you have a concern, I would suggest get your batch numbers, and ask at relevant forums. There are databases.
The mRNA vaccine tells your cells to create the spike protein that was isolated from the original virus for about 48 hours at levels much lower than the virus itself. mRNA is used up by this process which is why your cells stop producing the spike protein and go back to their previous functions. Your immune system then attacks the spike protein and is better adapted to do this next time giving you better protection.
The virus takes over your cells completely turning them into covid virus factories destroying them in the process the new viruses then continues until your immune system can stop this. During this time the amount of spike protein from the viruses are much higher by order of magnitude than with the mRNA vaccine along with the damage cause by the virus replicating itself.
The spike protein is thought to have some adverse effects around heart issues, it is not well understood. However the risk is thought to be much higher from the virus than the vaccine due to shear volume of spike protein and the data seems to confirm this.
Happy for her, hopefully her recovery will keep progressing
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One hallmark sign of a post-covid malaise is that your body stays capable way longer than your neurological and cognitive functions.
While you have expressed healthy grains of doubt, the case of Dianna goes in line with a post-covid progression. Not being able to get out of the bed means that she physically could do it from time to time for sure, but her brain could not reliably cope with navigational tasks, so she was risking sudden falls and further traumatization. Add the extreme fatigue every such exercise had caused. It is not exactly a bedridden condition, you are right, but it is bed-attached for sure.
It is not a "psycho" part of the illness as you view it. It is an organic condition caused by metabolic and immunological derangements occurring in the body of a post-covid patient. You are not alone in your views, many medical doctors make the same judgements when they see post-covid patients for the first time. In their world, it is always an organic/psycho separation, but when the underlying metabolic mechanisms are impaired, you get the full spectrum of manifestations.
You provided good points though, something I did not think about.
I appreciate you at least responding, but it's clear that you were offended by me expressing skepticism about a specific person claiming to be a COVID long hauler, who directly profits from doing so, and who presents a purported symptomology that contradicts human physiology and exercise science, despite me bending over backwards to be tactful regarding the subject of long COVID. Do you really want this person being your poster child?
I am not offended at all, mind you. In reverse, I applaud to your criticism because it gives a fresh perspective, so I upvoted your post :) The only mistake you make is believing that there is a significant psy component in it, and that a human body and its biochemistry is a mechanical Newtonian-like macro-world apparatus.
Peace, take care.
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Do we know the exact origins of every virus? Does it matter in the grand scheme? Perhaps it helps in developing treatments, but I would question what specific advantages you get knowing the exact origin of a mutating virus with multiple strains. I guess my point is that it seems like our time would be better spent developing treatments and protections against this and future pandemics instead.
Understanding the origin is the most critical piece of information to avoid future pandemics. Current data is inconclusive even for the most basic questions, such as the origin being natural or not, which very much matters, but investigation efforts are actively suppressed. Or at least I would think it matters, you and everyone else do not seem to care.
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What is the connection between Long Covid and Terry Davis?
If I'm not mistaken, he was (among other things) an online stalker of the woman in the video.
Terry Davis adored physicsgirl. He would have been sad that she was sick, and happy she got better.
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If you're thinking about having St John's Wort, and are currently taking any head-medications such as antidepressants or benzos, make sure you speak to your doctor/GP first.
Even though it's a plant and is natural, it can either reduce the effect of some medications or increase the strength. So wouldn't take it without medical advice.
Anyone who suffers from what? Why is St John’s Wort good for it?
I will never watch this type of video, but it sure does sounds like whatever affected @physicsgirl was awfully serious if it left her non-ambulatory for multiple years.
It sounds like maybe you’ve had a positive experience that you might be willing to elaborate on?
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> And what's with this HN pattern of acting all innocuous and going "uh... care to elaborate a little further? hmm?? hm???"
The 'pattern' is that comments are supposed to provide some value and not just generic statements. The HN community overall doesn't want the comment section to turn into a Facebook comment style section.
So if you're going to comment, at least have something to back it up or give something that contributes to the quality of the discussion.
Ironically they posted, 2 days ago..
"Cool story but at least try to give some argumentation when you say stuff like:
>The design of the language in Dockerfile is ad hoc in a bad way. It’s difficult to understand, for me, and easy to make mistakes.
Because that reads like a skill issue to me"
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If you advertise/recommend something it is your obligation to make the case for it. Not for the reader to research it. We should want this board to keep its high information value, not devolve into low information spam.
The comment they were criticizing had basically nothing to do with the video. Aim your own critique upstream because that's the source of the problem.
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What does this even mean
Some kind of trolling, I assume. Diana is not trans.
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No, not everyone is as lacking in empathy as you.
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"Ignore your illness, and just keep working" is not a viable course of action, especially not with long-covid, speaking from experience here. In third-world countries without a socialized healthcare, this simply means these people work themselves to death, starve themselves to death, or need to rely on others for their survival. It is an absurd illusion that one can just ignore a serious health issue this way.
Or, in language a non-empath like you you would comprehend: the world is better off without your opinion.
I live in Kenya and have not heard of a single person who got "long covid", or knows someone who does. It has nothing to do with working oneself to death as you imagine, this is a phenomenon that does not exist outside a certain social bubble.
You say you speak from experience. What exactly is your third world experience based on?
Post-viral fatigue definitely happens in Africa, but only very privileged people with the means to lay around doing nothing will allow it to knock them down so hard they literally don't stand up once in two years. Post-viral fatigue to this degree is a phenomenon of the idle upper class. It doesn't paralyze you, it just makes you tired and miserable. Normal people push through and carry on, because they must.
Or they die.
From long covid? And because they didn't go two years without standing? You can't really believe this. Going outside would not kill her. Choosing to stay in bed for two years has done her far more damage. Staying in bed is worse for you than hard drugs.
Unless you got cold fever and you're literally too frozen to get outside, or you got your leg broken, there is absolutely no way you wouldn't get out at the very least once a day.
I believe it's a mix of depression and lack of will, being hungry and having nothing to eat is the best way to make someone get back on his feet. It happens everyday with the lower class, but people in the top of society don't feel that very often, or even at all.
:')
I was expecting some paralyzed person walking but it's just a video of someone with chronic fatigue syndrome standing up.