long covid has very similar demographics to chronic fatigue syndrome.
issues like these are very politicized, but it's likely that most of long covid is a combination of people who are having post-illness long-term sequelae and then also people with CFS-like symptoms, perhaps exacerbated by negative media coverage around covid and long covid.
Can you explain how negative media coverage is relevant here? How can a real illness that people are suffering from be affected at all by negative media coverage? Are you saying that it's something that people are imagining because they are being influenced by media reports?
And what do you mean by "politicized"? Where has long covid been politicized? I haven't seen anything like that.
> real illness that people are suffering from be affected at all by negative media coverage
Real illnesses that people are suffering from can be psychosomatic or affected by mental status. There is a ton of stigma around suggestions like these, hence the subtext of your comment that a "real illness" is independent from mental state.
> And what do you mean by "politicized"? Where has long covid been politicized? I haven't seen anything like that.
If you are a researcher and your research suggests that many cases of long covid or CFS have a psychological component or are psychosomatically driven, you will get death threats as well as condemned by advocacy organizations. [0] That is what I mean by politicized.
The underlying root of the issue is stigma around any sort of illness that has a psychological component.
Is there any evidence that it is psychosomatic? My understanding is that CFS (and long covid which indeed appears to be similar) affects a wide range of people, most often after some kind of viral infection that is very much physical in nature. And furthermore that the most successful treatment programs tend to focus on careful regulating exercise and diet which again seems to be largely physical.
Just because the underlying biological mechanism isn't understood doesn't mean that there isn't one. To me CFS seems like a case of a disease neglected by medical science because it's dismissed as being psychosomatic.
A study of ~25,000 persons found stronger statistical correlations between the belief in having been infected and long COVID symptoms, than between serology tests of prior infections and long COVID symptoms. Except for the persistent loss-of-taste symptom, which does not correlate with belief in prior infection and only correlates with serology test results. https://pubmed.ncbi.nlm.nih.gov/34747982/
The layman interpretation of this is that long COVID is possibly a mental health issue associated with the belief in having had a prior infection, except for the loss-of-taste symptom which is very specific to COVID (vs, say, persistent fatigue). Not to say "it's not real", but maybe "it's not always viral in origin".
Yep. This would line up exactly with what I've said: a post-viral sequelae (with unique post-viral effects for covid) superimposed on a CFS-like disease population that is more driven by psychological factors, both being referred to by the label "long covid."
It’s really easy to discard that study. Someone who thinks they had COVID-19 and didn’t even bother getting tested is likely to have had a more severe case. Maybe it wasn’t even a case of COVID-19 but a severe viral infection nonetheless. Meanwhile serology positives would show up even after mild infection.
A serology test is just proof of prior infection. It says nothing about the severity and would even count asymptomatic cases. So the study is comparing apples and oranges.
1. Antibody positives are more likely the more severe the case of covid
2. Your point was that people with more severe covid would
> thinks they had COVID-19 and didn’t even bother getting tested
The problem with that theory is that the serology testing in this study was conducted on everybody so whether or not people chose to get tested when they had covid was irrelevant. The fact that perceived infection correlates higher with these symptoms means that these symptoms are more related to someone's self perception of infection than any physical change.
CFS is far from neglected and there have been a number of studies attempting to show a physical cause. We've had a number of false positives that have later been debunked.
> the most successful treatment programs tend to focus on careful regulating exercise and diet which again seems to be largely physical.
This is coming from the PACE study, I'm assuming. PACE is largely viewed as suggesting that CFS has a substantial psychological component. There is a bunch of other literature on this as well.
Exercise and diet changes are usually successful treatments for psychosomatic-like illnesses, so I disagree that this treatment means that it is a physical disease.
Many of the original researchers who provided evidence that the disease is non-physical in nature have since left the field after extensive death threats and harassment. [0]
> Reuters contacted a dozen professors, doctors and researchers with experience of analysing or testing potential treatments for chronic fatigue syndrome. All said they had been the target of online harassment because activists objected to their findings. Only two had definite plans to continue researching treatments.
Watching how poorly some professional athletes perform during long Covid recovery makes me highly doubt CFS as the root cause. Also, people have reported long-term loss of smell which also isn’t a typical post-illness or CFS thing.
as i've said, long-term sequelae certainly exist - and they are different for covid probably.
i also have had long-term loss of smell and modification of taste after getting a breakthrough delta case.
that said, demographically (as well as by diversity of symptoms reported), it does appear that there is also a "CFS-like" disease population being super-imposed on top of those that are experiencing long-term sequelae. much of the conversation around long covid is also being funded by ME/CFS lobbying/patient advocacy groups [0].
i think there are two distinct phenomena, and the fact that women are over-represented as long covid patients may be due to the CFS-like phenomena rather than the sequelae one.
Is this part of some weird political debate or something? The only thing I got out of that article is that one needs to count both the vaccinated and the recovered towards immunity levels, which is very much not controversial.
So, in March people should have said the opinion was reasonable and made corresponding policy decisions.
Include any facts that support a belief and omit all others.
Anyway, I’m simply saying the track record of the Journal leans more in one direction, and is frequently wrong.
Furthermore, no one ever follows up to correct all those incorrect opinions
Perhaps the steady diet of “coronavirus is no big deal” and “climate change “ opinions has skewed my opinion but to me the wsj seems to have an agenda.
Look, I don't really love the WSJ - but "what went wrong" is the exact same thing that went wrong with the government's story around vaccination.
If we would have reached herd immunity at 70-80% vaccinated (which is what was being said) then the argument was we would reach it sooner due to antibodies.
Given that delta evolved and rendered both of those stories bunk, I think it is silly to solely blame the WSJ for being wrong at predicting the future here.
From my point of view, the scientific consensus how covid spreads was pretty good from the start, and has only gotten better. With more information, the picture is more detailed, not fundamentally different.
What a completely unrelated piece by Bjørn Lomborg has to do with covid is not easy to understand. Hopefully no one is surprised if Lomborg has a simplified view of any given environmental problem. He is a business school professor after all and pretty well known for these things.
If you look at the chart of covid cases from March 2021, it is true that herd immunity was, in fact, near. Cases dropped to nearly zero shortly thereafter. Until the delta strain, of course, but the WSJ can hardly be expected to predict the future.
i'm not citing the opinion piece as a general endorsement of the wall street journal, or even this article. merely citing it because it condenses the evidence showing that CFS patient advocacy groups are heavily funding many of the prominent long covid organizations.
Any viral infection can cause some medium term effects. But most of the people with so called long-covid didn’t even test positive. They are just really convinced that they got it some time ago and that now they have long covid and the doctors are gaslighting them
I know people with long covid and people with CFS, and while there may be some overlapping symptoms that are common, they are decidedly different in most people.
As I've said, "long covid" is an overloaded term right now.
I'm also not going to be drawing conclusions from "I know some people X" and "other people Y." Hopefully the scientists studying this don't do that either.
> Enough research out there that disproves the ‘it’s all in your head’ theory.
That is definitely not even close to the consensus opinion of the field. there have been a number of attempts to try to show viruses as causing cfs, they have been discredited, whereas the pace study has not. [0]
post-aids patient advocacy, in clinical practice it has become incredibly unwise and unpopular to say that something is psychological in nature. even researchers who don't do anything in the clinic will still get death threats for suggesting otherwise.
Pace has been debunked. The idea that is has become unpopular to say something is psychological in nature couldn’t be more wrong. Talk to CFS patients before you make statements like that. There is not a single CFS patient who hasn’t been accused of making it all up. Not. A. Single. One.
Whenever a doctor doesn’t know the answer, it’s always psychological. It’s the easy way out.
People like you piss me off to no end so I’m gonna stop replying.
you clearly have massive internal stigma against people with psychologically-based illness. this is not the same as "making it all up."
this is exactly what i mean when i say this stuff is politicized.
i disagree fundamentally with the epistemic theory of "trust people to know what is causing their illness, not doctors or researchers."
e: for evidence of what this particular strain of "patient advocacy" looks like, just peruse through this person's previous comments (https://news.ycombinator.com/item?id=29398210), such as:
Post viral fatigue syndrome has been known for decades, although the exact mechanism of action remains unclear. There's nothing special about COVID-19 in that regard.
We don't know that viruses and bacteria are always the trigger for CFS. That's a reasonable hypothesis but remains unproven. There could be other root causes for some cases.
Totally. Media coverage is why I suddenly started falling asleep during my work day and why my sense of smell and taste are still screwed up a year later. I can't taste oranges, cannot stand the smell or taste of tap water, and my office smells like an ash tray because CNN and MSNBC, and not because there's actually an issue. One of the very best ways to be insulting on this sort of an issue is to tell people that what they're experiencing is a fabrication of a media conspiracy that doesn't exist.
1. Maybe actually read my comment, where I acknowledge that post-covid sequelae are absolutely a thing. I myself experienced long-term sense of smell screwups.
2. Psychological components of an illness are still an illness, and I'm not suggesting that long covid is a "fabrication." You need to get over your internalized stigma, psychological effects can be incredibly powerful.
People experiencing CFS get similarly outraged when people suggest there is a psychological component to the disease. This is due to stigma. Indeed, if anything, CFS is good evidence of the strong impact that even a (probably) psychologically derived illness can have on one's physical well-being.
3. Even saying that something is at least partially driven by the media does not mean it is not a "serious" problem. Media coverage of high profile suicides leads to a measurable increase in the number of suicides in the general population. Those people killing themselves is not a "fabrication" and is in fact a really serious problem. i would be surprised if we hadn't seen something like cfs for covid emerge given the level of scary (to be clear, not irrationally scary, justifiably scary) media coverage around covid.
> This is due to stigma. Indeed, if anything, CFS is good evidence of the strong impact that even a (probably) psychologically derived illness can have on one's physical well-being.
AFAIK there is no strong consensus that (even covid-unrelated) CFS is probably psychosomatic in constrast to, say, immunologic.
It's hard to get a "strong consensus" on a negative. I think the general belief is that the weight of evidence is towards most of these cases being psychosomatically driven, as well as some poorly understood post-viral sequelae.
Perhaps it doesn't matter that much at all, the treatment for either is the same. Indeed, if you tell people with CFS that they instead have post-viral sequelae, their outcomes are significantly better.
Basically, the current status is no mechanism has been identified to cause CFS, there is a huge diversity of symptoms and demographics of who gets CFS, and there is substantial circumstantial evidence suggesting large psychological components (differences in effectiveness based on what you call the disease, larger correlation between self-reported illness vs. serological results, etc.) that all come together to form a broader whole. PACE is largely accepted in the medical research community, it has only been "debunked" in the blogosphere and news articles.
