Honest question: How much is really known about long Covid and have there been studies investigating whether similar symptoms could be caused by the vaccines as well?
(This is not a political statement. I am honestly interested in what the state of empirical evidence on the issue is and I found it hard to find out anything definite about it as a layman.)
How much do we know? Probably not as much as we might think we know.
Could it be caused by vaccinations? Probably not. There seem to be plenty of unvaccinated people with long covid. The politicization of things might make it hard to study in general. Many of the people who were not vaccinated will insist they just had the flu, or a bad cold and would have avoided any sort of official diagnosis.
Could vaccines have made it worse? This is probably even harder to answer definitivel
> Could it be caused by vaccinations? Probably not. There seem to be plenty of unvaccinated people with long covid.
I don't really understand how that is relevant in this context? Aren't there plenty of people who never suffered from long covid, but suffer from irritable bowel syndrome, both vaccinated and unvaccinated as well?
And that's tough to study in the general population since a lot of vaccine recipients have had covid infections, whether or not they even realized it or tested positive.
I can't decipher what you are writing. My point is that he asked a question of whether vaccinations cause long covid and answered "probably not". Then spuriously used as his evidence information about unvaccinated people.
Both groups can catch COVID. Both groups can develop long COVID symptoms.
This fits with "There seem to be plenty of unvaccinated people with long covid."
You said:
"For this to be logical, you need to state that vaccinated people do not have long covid."
Which I don't follow.
- If long COVID is unrelated to being vaccinated, but is caused by having a COVID infection, you would expect both vaccinated and unvaccinated groups to develop long COVID symptoms because they can both have COVID infections.
- If the vaccine causes long COVID (but a COVID infection itself does not) then you would expect non-vaccinated people to not get long COVID.
So if both groups get long COVID symptoms, it seems unlikely that the vaccine causes it while COVID does not. You also can't expect the vaccinated group to report 0 cases of long COVID since they can still have COVID infections.
Perhaps the long COVID rates would be different between the two groups. Or the severity of initial infection and symptoms. Maybe vaccinated people are more likely to have a COVID infection but not report any symptoms or a positive test result at the time of infection because their symptoms are milder.
My point is not to provide evidence or make a claim one way or the other, but just to say that the presence of long COVID in both groups is not evidence that the vaccine itself is causing long COVID.
Good points and thank you for taking the time to clarify. I would still contend that knowing that unvaccinated people getting long covid does not provide any insight into vaccinated people getting long covid.
And I'm happy to amend my statement to "For this to be logical, you need to state that vaccinated people (who never had covid) do not have long covid."
> I would still contend that knowing that unvaccinated people getting long covid does not provide any insight into vaccinated people getting long covid.
Right, but it does provide insight into the vaccine being the primary cause of long COVID, rather than an actual COVID infection.
So it depends on how you interpret “the vaccine causes long COVID” meaning exclusive to or inclusive of COVID also causing long COVID.
"vaccinated people (who never had covid) do not have long covid."
seems very difficult to study in the general population given the prevalence of COVID infections among the population and the ability for people to not know or test whether they have had COVID, even if they did have a mild infection.
The symptoms remain untestable and therefore can be mixed with a host of other issues and diseases that are untestable. They will not be able to differentiate between a person with long covid, a person with long covid plus another untestable similar disease, or a person with an untestable similar disease for a long time, if ever.
We don't know what systemic effects the vaccines have because the companies lied and said the vaccines stay at the injection site (aka, therefor they don't need to do more expensive testing).
We also now know that the manufacturing process for some brands was different from the trial groups to general availability, the latter of which contained much more varied biological material.
So, what could a bunch of unpure mRNA, RNA, and DNA strands coated in an immune system-evading 'nano-coating' do to your body? God only knows at this point, we didn't do the science to find out.
Point 1 was in a Pfizer document first leaked from Japan's government in mid 2021, officially released a year or more later.
Point 2 (ish) was in a footnote in Pfizer's FDA approval notice, there were formulation changes in the inactive ingredients between the EUA and brand version for (IIRC) shelf-life stability. I don't remember details on the exact difference being in there though, and I don't remember differences between the trial and EUA versions (but scaling up can cause this by accident).
Thanks, I'm not talking about the difference in the EUA and the Approved versions. I'm talking about the clinical trial vs all subsequent versions with regards to how the actual vaccine genetic material was produced.
I can't find the reference at the moment, but I believe they used PCR to replicate the mRNA during the trials, and used the bacteria replication for the subsequent versions.
There were a huge number of people who had long covid symptoms before vaccines were available.
I have not heard of people saying they contracted long covid is response to the vaccine (without getting covid) - though I will admit I've tried to stay away from long covid news these days.
Fine. But I was very sad that the questioner didn't do some googling before they introduced a spurious question about vaccines into a comment thread about long covid.
20% of the US population remain unvaccinated. I think that 60 million people is a sufficient control sample to be able to tell the difference between long covid issues and vaccine issues.
If you don't allow other people to ask questions, then I think it's more likely that you are yourself politically motivated.
This question might be asked by someone who has someone near them suffering said symptoms after having been vaccinated or after having suffered from long Covid (or both).
It's entirely unpolitical.
Honestly, it's worrying that we still aren't able to speak about these things openly without this kind of comment even in a community like this.
I've seen people claim that the vaccines ultimately cured their long covid. My suspicion is that a significant portion of long covid cases (and I'd be willing to bet a majority) are better described as anxiety disorders. I say that as someone with a large amount of personal knowledge on the subject of anxiety gained over a lifetime. Including lots of bowel issues.
This is very typical.
If you know a lot of about anxiety, you'll have an anxiety bias and will try to explain everything as anxiety. Psychologists will also perceive LC to be psychological. Immunologists tend to think it is immune related, gastrologs think it is gut-related, etc.
Out of all these it's quite simple to dismiss the psychological explanations of LC. There are obvious physical changes found in various tissue and blood in LC patients. Changes that we can be reasonably certain aren't caused by mental issues.
Well I could reasonably bike up one specific very steep hill near my place without downshifting much until I got covid.
Then it took me more then half a year to get back to that point. It was a very slow recovery but most importantly, it could be quantitatively measured first from how far until I had to disembark my bike to walk up the rest of the hill to eventually the lowest gear I had to to shift into to get to the top without ever disembarking.
I’ve never had any other flu-like sickness cause me to be weak for so long.
I didn’t either, but a friend did take almost a year to completely recover what was (likely) the flu.
One should remember that the flu has been around forever, so the flus you are comparing to were probably the 10th exposure - recovering from a new illness - and not being a small child - may take much longer.
If I remember right, something like 60% of people who claim to have long covid have never tested positive for covid. It could be they never got a test, or it was just too long to still be positive, but whatever the exact number was it was a really high percentage so I'm also leaning towards a large amount of it being psychosomatic or having some other cause.
I have IBS - diagnosed long before COVID. I've had COVID a few times now and I experience very mild cold symptoms, but I have an IBS flare up each time.
I would say my flare ups have increased over the past three years, I assume now that I must be fighting off a repeat variant occasionally.
I would not at all be surprised if this just exposes existing IBS in people, maybe experiencing their first noticible flare up
To any new sufferers of IBS, I would highly recommend Metamucil or any psyllium husk product. I regret not trying it sooner.
IBS is complicated. Psyllium tore me apart inside. In fact the thing that worked best was cutting out as much nuts and vegetables as possible. For other people it's pork or coffee or certain sugars.
It's definitely a disease we need to learn more about.
This makes it look like IBS is more a symptom for a host of related diseases rather than a disease on its own.
Which is the tricky thing about diagnosis that a lot of people don't really get. Symptoms are sexy, symptoms get the headlines, symptoms get treated. But sometimes multiple diseases present with similar symptoms. And for all we know about medicine and the human body, there is still a lot we are unsure about. So a lot of the time, symptoms are all we have to go on.
And it sucks for you while we're figuring it all out, and I do sympathize, but I can't help but be fascinated by medicine and biology when I run into these situations.
It is so interesting the affects covid can have - when I most recently got covid I had a really bad joint pain flare up in my right hand and right ankle - like arthritis - it took about 6 weeks to pass, but to me it felt very linked to the covid infection.
I may not have been, but it is the first time I've had symptoms like this.
IBS is a illness that many people legitimately suffer, but also many hypochondriacs claim to have without evidence.
The symptom profile of long covid is very close to lyme disease, another disease people actually get but also many more people claim to have without evidence.
I'd like to see the overlap between long covid sufferers, IBS, lyme disease, people with a gluten allergy, PCOS etc and the level of evidence that they actually have those diseases.
Maybe part of the problem is that IBS(-like) symptoms, and many "fuzzy" / hard-to-diagnose ones (fatigue, etc) are also caused or exacerbated by anxiety and frustration and emotional distress.
So if I'm not hyperchondriac, but am frustrated and stressed by (x) random symptom or covid related (y), or being off sick w/ "normal" Covid & struggling to regain energy, then if I'm emotionally distressed by it, then may develop IBS and fatigue symptoms on top of that - which then feeds into the loop...
(Said as someone for the last several months currently struggling with a whole bunch of symptoms and not managing to get any helpful diagnosis or area I can work on to improve things...)
PCOS is a strange one for you to throw in there considering it has a physical manifestation that can be very reliably tested for via an ultrasound. The others are things that are quite often diagnosed via process of elimination and don’t have definitive tests.
People get negative ultrasounds and claim doctors just hate them or refuse to help them.
I think a part of this is online communities spring up around these diseases and a doctor telling you that you don't have it is basically them telling you they don't get to hang out with your friends anymore.
Better data exists for IBS on this line of thinking:
> The Illness Attitudes Scales (IAS) and the Beck Depression Inventory (BDI) were administered to 40 patients with irritable bowel syndrome (IBS) and these were compared with 35 patients with organic gastrointestinal (GI) disease, 37 depressed patients, and 40 healthy volunteers.
> All the patient groups had abnormal IAS scores compared with the healthy group, but these were most marked among the IBS patients with elevated scores on six out of the eight subscales. Three of these were specific to the IBS patients: bodily preoccupation, hypochondriacal beliefs and disease phobia.
What do you suggest is done then? Given some people experience legitimate IBS, what quantity of false negatives (i.e. legitimate sufferers who are ignored by the medical system) are you willing to tolerate?
Also - given medical developments in gut health on GABA, the gut-brain link is not so crazy. So your study could be a reverse causation.
This doesn't say what you think it does. IBS being co-morbid with anxiety is not evidence that people are spuriously identifying as sufferers. It's the expected finding for a disorder in which psychological stress and the brain-gut axis are thought to be major causative factors.
I don’t have a source handy, but I seem to recall that ultrasound as criteria for PCOS has been criticized recently because it has a high rate of both false positives and false negatives.
"...another disease people actually get but also many more people claim to have without evidence."
Lyme disease can actually be detected. For IBS and long covid, you are making the "no true Scotsman" argument. Diagnosing those is basically filling a questionnaire asking in so many ways "do you feel like you have it?" The same is true for many mental illnesses, by the way. Not to discount people's experience of having these problems - they definitely are real - but since the "official" diagnose is very close to just people telling the doctor that they feel like they have it, self diagnosing is not as bad as you make it sound.
IBS is a syndrome (a grouping of symptoms), not a disease. It, by definition, has no clear cause or treatment. Also - it is pretty easy to prove you are experiencing these symptoms.
The body is a pretty complex thing, it can be difficult to determine the underlying cause of a symptom even if we do have an underlying understanding of what the body is doing (and sometimes we don't!).
> also many more people claim to have without evidence
I've long been curious what the ratio is in various situations like this. It seems the lynchpin for any argument for withholding support. I've only ever seen the equivalent of "well obviously" on both sides and never any data
When my wife first had ongoing symptoms after covid (before it had a snappy name), it was interesting how many people wanted to think that somehow she was making it up - and that being trapped in bed/on the sofa while I was out having fun with the kids was some sort of 'affectation'.
As people understood what long covid was and does, people generally came around to the idea, but still (mainly online) people have this opinion that 'people must be making it up' - despite SARs being known to cause similar long term issues for some of those infected, and some people having long term impacts from Spanish Flu 100 years ago.
I don't understand the mindset behind a comment like this. Where does the confidence behind this opinion come from, when the knowledge basis falls below "bothered to Google it"?
The idea of a hypochondriac making a spurious claim to IBS is pretty ludicrous. You know if you have the symptoms or not, and IBS is probably the best possible outcome for someone with chronic bowel symptoms.
Lumping PCOS in with gluten allergy is giving "shit men believe about women's health." Maybe try listening to some women before forming opinions on their reproductive health.
Or perhaps there are significant links demonstrated in murine models of the
multi-directional relationship of the gut-brain-immune axis, and that traditional models of disease are not sufficient to elucidate this?
Bit of a technical note. Patients claim is the evidence on its own. Patient may be undiagnosed, but there is an evidence for such claim.
IBS, lyme disease, all sorts of allergies are very hard (and expensive) to diagnose. Some people have no money for doctors, and may not be even registered with GP.
If customer at restaurant says they have a peanut allergy, you better to believe them. Saying "there is no evidence for such claim" may get you in troubles very fast...
I have already seen several studies with the same scope and I know microbiome companies like Biomesight have already been collecting mass data on it. What is needed is research into treatments.
My wife didn't have long COVID, but did get a mild COVID infection (vaccinated, boosted).
She didn't get IBS per se; however, we have noticed a few changes with respect to her digestive system: she seems to have developed a recent sensitivity to wheat gluten and dairy/lactose. Both now make her gassy and uncomfortable.
The timing of it seems to be coincidental with COVID. Whereas we used to get pizza once or twice a month, it's basically been removed from our diet because it causes digestive issues.
So it's possible that some folks might not be having severe IBS, but a spectrum of digestive issues related to lingering effects that trigger inflammation with certain proteins/sugars?
Same thing happened to my wife, but it was long before COVID and not connect to any respiratory illness (or other illness we noticed).
I suspect the cycle is <something triggers GI inflammation> -> certain foods exacerbate the condition -> until inflammation or underlying cause of inflammation has resided, condition continues.
She has mostly returned to normal after losing many types of foods, but still can't eat beef or eggs in any quantity.
(This is not a political statement. I am honestly interested in what the state of empirical evidence on the issue is and I found it hard to find out anything definite about it as a layman.)