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Belief in Having Had Covid-19 Linked with Long Covid Symptoms (jamanetwork.com)
72 points by kvee on March 24, 2022 | hide | past | favorite | 52 comments



A confound this study doesn't really get into is that not everyone seroconverts (so "antibody test negative but still reports symptoms" doesn't _have_ to be a false positive), but nocebo effects are nevertheless very real, and not just for covid.

In the area of "lingering aftereffects", I see a lot of affinities between covid and lyme disease: both usually don't have long aftereffects, both can cause some serious aftereffects that take a long time to go away; both also have a population of people who have real and persistent negative health consequences that were not caused by the initial pathogen but are attributed to that pathogen by the person who has them.

The third group is the most troublesome, because they require both compassionate recognition of their subjective suffering and also a clinical decoupling between that suffering and its ostensible cause, and that's a hard thing to do well.


"not everyone seroconverts"

Really? Or do you mean not every tests positive for seroconversion months after infection. I mean, I suppose there might be some folks that are so severely immunocompromised that they cannot mount an antibody response, but surely the vast majority of infected do mount some antibody response.


There is a large population believed to have been exposed that recovered quickly and without a detectable antibody response. If you believe this paper, this may be because of an extremely effective cell-mediated response that prevented the release of enough antigen to trigger an antibody response:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8732273/


I have no doubt that such people exist, but they can't be that common, right? And to the extent they do exist, wouldn't their symptoms have generally been extremely mild? So you would expect most such individuals to not believe they've had COVID and to not have long-COVID, and therefore not to confound the results of this study.


In addition, it’s the immune response that likely leads to Covid organ damage so if an infection is interrupted so early as to not initiate an antibody response you’d expect any long covid effects to non-existent.


8.5 billion times a small percentage is still a pretty big number.


I'm not understanding the relevance. We are talking about the proportions of folks that fall into various buckets. The absolute values don't enter into this conversation.


I know quite a few people who believe that you can have long COVID without any initial symptoms, so it seems reasonable that there may be some people who got mild symptoms, believed it was COVID, and then have some ongoing symptoms that they attribute to that.


That is a very long and detailed paper, so apologies if I missed it, but I don't see any evidence of a "large population" of folks that clear the infection quickly enough to avoid triggering an antibody response. All I see from that paper, is that such people exist.


If you’re willing to take extended data table 1 at face value [0], then perhaps 1/2 to 1/3 of the exposed cohort is in this category. This is at least moderately consistent with other data suggesting that at least around 2/3 of the naive population will contract COVID and test positive on PCR is exposed.

In other words, the authors found a population that apparently did clear the infection this quickly, and they didn’t scour a particular large cohort to find these people.

[0] which you shouldn’t.


> do you mean not every tests positive for seroconversion months after infection

This wasn't your point but I'm trying to see whether this is accounted for in the study. I don't think it is, unless I missed something.

The study's self-reported long COVID group is people who in the past 4 weeks experienced any symptoms that had been ongoing for 8+ weeks. If these infections were 8+ weeks ago, these people would probably be seronegative anyway. To put it another way, seronegativity now doesn't rule out an infection 2+ months ago, so for some of these people their belief that they had COVID may match reality more than this article implies.

I don't know if there is a way to reliably identify a 2+ month old infection but I think you would need that to be able to say anything definitive about the linkage.


"Researchers analyzed survey data and serology results from 26,823 adults in France. They found no relationship between the participants’ belief about whether they’d had COVID-19 and their antibody test results from blood samples collected between May and November 2020."

That is a rather astounding conclusion.


I've talked to people who "know" they had covid but never got it confirmed with an official test, they could've easily just had a cold or flu. Likewise, I've talked to people with zero symptoms shocked to learn they had covid. I assume this is what's reflected in this finding.


Last year I joined a support group on Facebook for people who believed they were suffering from long COVID.

I was shocked at the sheer number of people who believed they had COVID between December 2019 and April 2020.


Presumably they're mostly Americans? That's a big range of time, and having Covid in December 2019 is somewhat unlikely but the chances were not zero (Wuhan is a big city with direct flights to international destinations, including New York and San Francisco), if an American told me they got Covid in April 2020, I would believe them, because the government was keeping that number officially zero through bureaucracy ("You didn't travel to China, we won't test you!" and later "Hey, we've found zero Covid cases!"). There were probably also a number of Americans (or Europeans who soon after travelled to the US) who partied in Ischgl, the Austrian ski resort which became a super-spreader site during the months of February and March.

https://abcnews.go.com/Health/disaster-motion-flights-corona...

And Google Trends for "fever": https://venturebeat.com/2020/09/02/google-releases-data-set-... , but well, it was winter, a comparison of Winter 2019 and 2020 would've been useful.


some degree of false positives and negatives would be expected, but "no relationship" is still shocking


Not really? Most covid cases are mild, and the symptoms cross over with those caused by a lot of other pathogens. For people who didn't get tested and have mild symptoms, there's no particular reason to assume they had covid, but given the fact that (especially earlier in the pandemic) they are constantly reading about it, people are probably predisposed to assume it's covid.


The mind is a hell of a drug.

Not surprised at all. Drastically alter people’s daily routines, restrict their movement, add stress and uncertainty plus the risk of death and do it for 2 years.

Why would anyone be surprised that psychological manifestations would result independent from actual covid-19 infection?

Psychogenic illness happens all by itself pre-Covid. Seems entirely reasonable it would be much worse during a global health crisis.


IMO you can find similarly strange phenomena without the unusual emotional stress of Covid. This finding is completely in line with my model of how the avg person reasons under normal circumstances. The impulse to check logical blindspots and fallacies simply doesn't exist, so "people are talking about Covid and I had a headache this morning" is all the evidence they need.


It's a predictable consequence of a broader astounding conclusion. Most people have extremely tenuous grasps on reality. Simple logical constructs are beyond them, to the point that they'd scoff at the possibility that they got a cold/allergies during a period when the entire world was talking about Covid.


Couldn't a lot of this be T cell response?

My wife and I both got COVID in March 2020–she showed symptoms before I did, but I had it for many weeks and she had it for 2 days.

We both tested for antibodies multiple times since then and she never had them, but I did.

From the research I did back then it seemed like it was likely due to T cell response.

Quick googling just now yielded this, which looks pretty interesting: https://www.t-detect.com/


> The results “suggest that physical symptoms persisting 10 to 12 months after the COVID-19 pandemic first wave may be associated more with the belief in having experienced COVID-19 infection than with actually being infected with the SARS-CoV-2 virus,” the authors wrote in JAMA Internal Medicine."

Or they believe they had COVID because they have symptoms of Long COVID. Hard to say based on the survey's questions because it doesn't seem they asked them why they think they had COVID.


I have CFS/ME/Dysautonomia and apart from the lack of physical damage to the lungs I don’t see much difference at all between what I have and Long Covid. Because of the medical gaslighting that is still pervasive around CFS/ME I just tell people I had Covid and am experiencing long Covid despite the fact that I don’t think I’ve had it and my symptoms existed long before the outbreak. I have hEDS which is a autosomal dominant mutation that almost always results in getting CFS/ME. My hope is that the number of people afflicted with long Covid will make it impossible to ignore and lead to effective treatments.

It also makes sense that a number of people who get long Covid would have got CFS/ME eventually anyway either on their own or via another disease stressing them into it. It seems that the likelihood of getting CFS/ME is determined by genetic predisposition with some people unable to get it at all.


>I don’t see much difference at all between what I have and Long Covid

Nor do I, it's psychosomatic or depression, I expect those seeking these diagnoses will instead now claim to have "long covid".


That is entirely false. There are now very clear diagnostic tests that can prove it’s false. The original proponents of psychosomatic (published in Lancet) have recently been forced to recant given the mountain of evidence against them. Unfortunately we are still living with the damage done from the original gaslighting.

I can assure you doctors are no help with CFS/ME or Long COVID and I get no benefit from a diagnosis of either of them. I don’t have a formal diagnosis, there is no point as there is no help, nor would insurance cover treatments.

The only difference is that LongCovid has happened to so many people at the same time that it’s almost impossible to ignore - although many people, institutions, and governments will definitely try to ignore it.


>have recently been forced to recant given the mountain of evidence against them.

They truly haven't, you need to keep up-to-date on Wessely.

I always found the justification hilarious: "it's obviously a real condition because it responds so favourably to antidepressants and anxiolytics..."

Yes, I wonder why...

>The only difference is that LongCovid has happened to so many people at the same time that it’s almost impossible to ignore

Just another social contagion, and a sexy one people have read about exhaustively for two years.


Why would I follow people who clearly don’t know what they are talking about. NICE guidelines now explicitly exclude exclude GET and CBT has had to be reinvented and is still explicitly not a cure. A best approximation of ‘new CBT’ is a treatment for dysautonomia for which beta blockers are more effective.

You’re not the only person who is dismissive. But the evidence that you are wrong is already out there and constantly growing.


As I recall the antibodies are only reasonably detectable in a lot of people up to about 3 months after infection, after which the tests don't find them. On top of that we know quite a lot of people don't seem to end up with antibodies after the acute phase as well. Alas the article lacks the detail to assess whether they missed them due to being too late after infection or if there is a link between lingering symptoms and a lack of detectable antibodies. I wouldn't discount these people are ill its far more likely an error has been made in data collection or its a marker for the type of people with lingering issues. Because very real medically concerning results have been seen in long haulers (and ME/CFS) patients that explain a lot of their symptoms just not why they have POTS and cellular energy issues.


Do we know whether "long covid" is actually Covid-19 specific or did folks who got SARv1 also get long covid?

For that matter, do we know whether there's something like "long covid" for other coronaviruses or even other flus?

My anecdote is that I've had lingering effects after other flus and I know other people who have as well.


The chinese did some good reports on ME/CFS prevalence after Sars. About 50% of everyone who got Sars had linger symptoms initially after recovering from the acute phase and around 10% of everyone still had ME/CFS about 12 months later, none of which have recovered from that, but a few did die. There are at least 3 papers on it, I went through them just as Covid19 was kicking off.

Covid19 produces somewhat less commonly lingering symptoms compared to Sars and less severely but no where near as much as we might like (more like 5% long term).


Yes! I don't have the link here now, but lingering symptoms are common after a viral infection; the one that I saw said that the incidence of some flu symptom remaining months after infection is as high as 40%.


Consider

> "Long COVID Symptoms Linked With Belief in Having Had COVID-19"

vs

> "Belief in Having Had COVID-19 Linked With Long COVID Symptoms"

Guess which is more consistent with the article.

Guess which is more soundbytey/controversial.

Guess which was chosen.

smh


These two mean exactly the same thing, no? Does anyone read "linked" and infer a direction of causality? To use the famous example, there's nothing wrong with the phrase "Rain linked with wet streets"


Absolutely it infers a direction of causality; unless carefully worded to avoid that implication. That's just how human perception works. Simply saying 'linked' instead of 'causes' isn't enough to dispel the hallucination, and people are typically aware of this when they write such titles.

But even putting causality aside, it also implies something about the direction of the 'join', to use a database term; one is like a left join, the other is like a right join (well, a left join with the order of joined tables reversed).

'Belief of past Covid linked with long covid symptoms' implies that belief of past covid may also be linked to other things, but one of those is long covid symptoms. The visual created is that the belief of past covid may be linked to all sorts of things, one of which is exhibiting long covid symptoms. Those wacky 'past covid believers' are at it again!

'Long covid symptoms linked with belief of covid' implies that long covid symptoms may also be linked to other things, but one of those is belief of past covid. The visual created is that having long covid symptoms may be linked to all sorts of things, one of which is believing you must have had covid in the past causing them. Quite a reasonable assumption.

Therefore the order not only matters in a perceived 'implies causal direction' sense, but also in which direction you place the one-to-many emphasis on.


> Simply saying 'linked' instead of 'causes' isn't enough to dispel the hallucination, and people are typically aware of this when they write such titles.

I suppose it's possible that I have a blind spot here due to basic statistical literacy, which definitely isn't true of the general audience for these articles. (Note that I'm not implying this is true of you; your complaint about how the general public interprets the article is independent of your own interpretation of it).

----

Tangentially, if we take for granted your claim that the article implies that the belief caused the reporting of long covid symptoms: why do you think the article is more consistent with the other direction of causality? Symptoms like cognitive problems, soreness, and fatigue can be devilishly hard to pin down as pathological, which is why CFS has been so tricky a field for so long.

I speak from experience: I've recently started working with an immunologist/CFS specialist after decades of these symptoms, and I'm constantly double-checking my reporting of symptoms against plausible alternative explanations, including psychosomatic and non-pathological causes.


> why do you think the article is more consistent with the other direction of causality?

Ah, the authors actually make their intended direction clear towards the end of the abstract:

> The results “suggest that physical symptoms persisting 10 to 12 months after the COVID-19 pandemic first wave may be associated more with the belief in having experienced COVID-19 infection than with actually being infected with the SARS-CoV-2 virus,” the authors wrote in JAMA Internal Medicine.


I don't find this surprising personally, the psyche is an underrated aspect of one's immunity. Thoughts govern the body more than mere commands or receiving sensory "data". If one feels unwell "in his head" then that means he is actually unwell or eventually the body will "adjust" to his perception: feeling unwell, or at least not optimal. Similarly the opposite is probably true: having a clear mind probably helps more than not.


Nope, psychologizing real physical disease has caused immense damage. Post Exertional Malaise is very real and physical, fix that and peoples psyche will improve.


This reminds me of the inverse placebo effect, e.g. people who actually get sick because of radio towers and what they ‘heard’ radio towers can do to your health…


Completely overlooks the obvious: those with symptomatic infections likely had more severe infections and did more lasting damage than those who were asymptomatic.


From the article:

> They found no relationship between the participants’ belief about whether they’d had COVID-19 and their antibody test results from blood samples collected between May and November 2020. In fact, about half of participants who believed that they’d had COVID-19 tested negative for SARS-CoV-2 antibodies.

If your hypothesis was true, there would need to be some correlation here for there to be a correlation in the second part of the study. You can't blame long covid on more severe infections if they didn't have covid in the first place...


I think the OP is right.

A feature of COVID is that it can be caught by mostly young people who have no idea they had it.

So there's the false belief that you had it but also the false belief that you didn't. You're more likely to have the latter false belief if you had a super mild case.

So the correlation can be affected by people with mild cases not realising they had it and not having long COVID (or milder long COVID).


How do you explain the people who complain of long covid but have no evidence of any infection?


That they have some kind of long covid type thing that's not caused by covid?

Chronic fatigue syndrome (I don't know whether that's generally accepted as a real disease these days but I know one famous person and one real life acquantance that had it) and similar is often triggered by an infection or virus.

I know another person in real life that was briefly unable to walk after a flu caused his immune system to attack his own nerve endings.

It seems unremarkable to me that people getting post-viral issues in the middle of a pandemic might assume they'd got covid.

It's like calling out car crash victims because "hah! It wasn't a car that hit you, you fraud, it was a pickup truck, look we have video evidence".


So you explain it by agreeing they don’t have long covid?


Yes? Unless the article is really strangely worded, then the group they looked at was people asked about 20 symptoms similar to long covid. If it was only people who think they have long covid, then it would be kind of weird if a bunch of them claimed they'd never had covid.


I have no idea what you're arguing about then.


If you take a whole bunch of people that you have blood samples for, and ask them if they have a list of symptoms like 'fatigue' then theres no correlation between those symptoms and whether tests show they had covid at that time.

Except for losing the sense of smell, because thats a fairly unique symptom. All the others are things that happen to people for various reasons, some very covid adjacent, like a virus, and some just random like genetics.

This is all true and useful and factual, but people seem to be leaping to the conclusions that 'covid' is fake, 'long covid is fake' when the only real conclusion is:

'If you have a bunch of long covid symptoms right now, then you are more likely to think you had covid last year than actually had covid last year'. Which is a neat result, but not exactly surprising.

But if you're big on the 'plandemic' then this probably feels like supporting evidence for that, when it's clearly not.

When the real takeaway is 'check for other causes in people reporting long covid' which I hope was happening anyway, even for those with a confirmed case of covid.


Amusing title... Belief in having broken your leg is linked with limping.


Yes if half of the people that broke their leg didn’t actually break it. May I suggest reading the article.


That was my reaction as well but it seems they (obviously, in retrospect) controlled for actually having had covid by serology testing.


Article states an interesting conclusion which is that belief in having had COVID does not correlate with evidence of actually having had it, yet belief does seem to correlate with Long Covid. Therefore some signal sent that long COVID is overlabeled.




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