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Isn't it pretty well-known that many diseases/disorders are likely from post-viral infection?

Howard Bloom who famously had CFS for decades talked about how he had a bad flu that never got better and his long recovery from it.

https://medicalerrorinterviews.podbean.com/e/howard-bloom-pa...

Michael J Fox who famously has Parkinson's mentioned being sick in his documentary "Still" while filming "Leo and Me" where other crew members also have Parkinsons: https://en.wikipedia.org/wiki/Leo_and_Me

https://www.michaeljfox.org/grant/h5n1-influenza-virus-etiol...

Many people who are suffering with Long Covid CFS are more obvious though. The significant event from their pre/post covid life was a covid infection.

It is beyond me how people can deny post viral syndromes. Just about every major virus has documented literature of people suffering. Long covid is putting a flashlight on a real problem. For those more interested in the journey, see https://www.youtube.com/watch?v=VYNMzaZk_iU for a great overview.

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>It is beyond me how people can deny post viral syndromes.

I feel part of the problem is we don't really have any good treatments for it. I know my doctor put it down as post viral tiredness but when I asked how long it might last or what I could do about it he just shrugged his shoulders.

I think it’s because we live in a world where you can’t recover. It’s all about being productive. Your doctor is saying , just get back to it.

If you got a virus and could take some time to rest then it probably wouldn’t be an issue. But I think we’re worried about viral recovery times because it affects GDP figures.

After I have a virus I like to go slow, but I’m not allowed because I have to keep up with my job.

It's bizarre how your comment is being downvoted when it's a very accurate description of many modern capitalistic societies.

Especially if we're talking about America, where companies literally try to fire you if you're sick or using up too much health care because of their bottom line. It doesn't even matter if it's illegal because unless they get caught there are no consequences and even if they do get caught, the consequences are often times so pathetic that it's worth taking the hit because the savings exceed the punishment.

it's being downvoted because it somehow implies that by taking a few days of rest one might treat CE/MFS, which is a very misguided and misinformed take

I didn't say it will treat it though? I said if you're sick, you need time to rest.

> by taking a few days of rest one might treat CE/MFS

Their comment in no way implies that

That's far from universal though. Plenty countries and employers do offer recovery time and space, but it's not sufficient.

I've had friends who suffered CFS (known as ME here in the UK for a time) while students or shortly after finishing high school, and they did literally nothing for years with thankfully parental safety nets without recovering. I don't even recall what eventually happened unfortunately - we're talking early 1990s.

There was once a term in more popular use, at least by doctors, that seems to have fallen out of fashion:

Post viral sequela

sequela

noun MEDICINE plural noun: sequelae

a condition which is the consequence of a previous disease or injury. "the long-term sequelae of infection"

That is the medical term for it. PASC is another name for long covid.

I listen to a podcast called This Week in Virology that's run by some prominent virologists and I hear this term used often, so I don't think that it's fallen out of fashion. Laypersons probably never much used the term to begin with.

Why is it such an issue that people deny it?

Viruses can cause organ tissue damages, that's enough for me to believe a virus can cause all sort of "syndromes"

I'm not on the denier side but harass me with fear, threats, and free movement mandates and I will deny that syndromes even exist.

It's an issue when doctors deny it. For many years, for many doctors, that was the case with CFS.

There is still no identified viral mechanism for CFS. So yes, you will continue to find many doctors that deny that there is convincing evidence for viral causes of CFS because that is the reality of the current situation.

Fair. I was talking about doctors denying the existence of CFS, but that wasn't the topic, was it?

If I had to make guesses, my take is a viral+immune system interaction. You get the virus which causes your own immune system to respond. In that response we get a 'partial match' to something inside of our own system. This leads to a low level inflammatory attack against your own system.

In type 1 diabetics there is some evidence of a post viral auto-immune cause in some cases.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2570378/

And COVID infections increase you risk of developing type 2 diabetes:

https://www.cedars-sinai.org/newsroom/verified-covid-19-infe...

But: absence of evidence is not necessarily evidence of absence. The fact that we still haven't found convincing evidence (with the caveat that 'millions of people complain about certain symptoms' in my book counts as overwhelming evidence) doesn't mean that such a mechanism doesn't exist. It may merely mean that we are looking in the wrong places, may not be looking in the right way and in general still have a poor understanding of how our bodies really work.

GBS for instance:

https://www.who.int/news-room/fact-sheets/detail/guillain-ba...

Is linked to post viral or post bacterial infections, and even though here too there is a lack of complete understanding at least the symptoms are so clear (up to complete paralysis) that denying it seems pointless. It's also super rare, so there is no incentive to deny it.

But if COVID ends up putting a sizeable percentage of the workforce out of action that may well have serious implications for how we deal with chronic disease and post viral infections. Incidentally: this is one of the possible futures that various experts warned about during the early days of the pandemic, that it would be a decade or more before we would fully understand the impact and that by assuming the post infection consequences would be mild that we may have made a grave mistake.

Fortunately some of the more outrageous possibilities have so far not surfaced, this is one that we can deal with.

Doctors are not medical forensics. It shouldn't matter that the mechanism behind CFS isn't known, there's ample evidence that the condition is real. So I reject that casual dismissal.

However, there is no known way to treat CFS. That problem is a much more valid excuse for a doctor to do nothing. But a doctor that refuses to acknowledge a patient's troubles because they don't know how to treat it is a bad doctor.

Then agreed it is a problem.

Some investigation revealed though that is has become more difficult for GPs to ignore the pressure put on them by insurers to send patients back to work.

* fatigue is something everyone feels sometimes and the answer is to push through it for most people

* it’s impossible to observe fatigue objectively, it just appears people are lazy or low energy

* there’s no known (or at least there wasn’t last time I researched it) bio markers for CFS

* there’s no known evidence of viruses causes CFS, just speculation

Etc

Things have changed a lot over the last 30 years. I think most people including doctors accept CFS is real whereas that wasn’t the case in the past.

The case for the cause of CFS is still very much open, and I think it’s probably naive to say CFS is caused by viral infections. It’s probably the case that some CFS is caused by viral infections, but again, it’s hard to differentiate, it’s hard to prove, and even if you did, so what? CFS probably also has autoimmune causes, which themselves are diffuse in their root causes and mechanisms, and even psychosomatic roots in burnout and other extreme stress syndrome. Finally, when the causes are psychosomatic, that isn’t code for “fake,” it is literally a real issue it’s just not caused by an extrinsic agent. The health impact of extreme prolonged stress is not a joke, and it’s not the persons “fault.” There seems to be a real need for people to pin their CFS and other health issues on some external factor and not the abuse they’ve (or others have) subjected their psychology and by proxy their body to.

> I think most people including doctors accept CFS is real whereas that wasn’t the case in the past.

I think most doctors accept that CFS is real, but I also think most doctors would not call a somatic illness fake. See for instance these researchers [0] who are research somatic causes yet all agree there is a physical/hereditary component. Anxiety disorders also have a hereditary component and they aren't fake.

[0]: https://theguardian.com/society/2011/aug/21/chronic-fatigue-...

Because of long covid and the millions suffering with it, we are revealing many new findings of a category that has largely been ignored for centuries. Darwin for example was thought to had CFS through his health journals, but nobody knew or cared about it.

When those new findings challenge our current understanding, we get smarter as a species and work to alleviate the suffering by investing more money and time into these matters.

Points aside, your third point is largely concerning.

My girlfriend's sister suffers from Long Covid for going on 2yrs now.

Some of the problems she had early on is that most doctors wrote her off as either lying or anxiety. More than one ER doc said there's no way that Covid could ever cause lasting symptoms other than lung damage, which she didn't have, so it's likely just anxiety. There was one DO she saw, during an admit for tachycardia, who said that he believed that she has a post-viral syndrome and knew of others with other post-Covid issues. The problem would be trying to convince his colleagues to believe it would be an uphill battle, so he hoped it was temporary for her. I know things have changed now but some doctors can be extremely arrogant and dismissive of patients (female patients more than male).

> but trying to get his colleagues to believe it would be an uphill battle

You have to go through a lot of education to become a doctor, so people naturally expect doctor's to be wise, but the truth is they are just good a memorizing things. They aren't necessarily smarter than any other person and have just as many blindspots.

* Source: My dad and uncle are doctors. My brother in law is a doctor. I have a friend who is a doctor. And I've known a lot of other doctors through them.

I dated a med school student for all of medschool and some rotations. Thus I have countless doctor friends now from those years. Everytime I bring up the reality of what most doctors are like, I get downvoted on HN for some reason.

The doctor I dated for years never drank water. She loved diet coke. She ate mcdonalds constantly but avoided the bun. She was skinny though. I had to teach her how to pump gas because her dad did it for her until she was 22. She loved cocaine and moly. Currently cycles Adderall and Ritalin (or something very similar) so she doesnt get too used to one or the other. I could list 20 other 'wtf?' type of things about her. Most others are similarly weird, careless, unhealthy, confused and logicless.

> She ate mcdonalds constantly but avoided the bun

If she also skipped the fries (and had salad instead) that wouldn't be the worst imaginable diet.

She must not have been that bad if you dated her for years.

She was an ok girlfriend. She's not the intellectual caring doctor people imagine when discussing advice from doctors.

> Everytime I bring up the reality of what most doctors are like

Is your insight that doctors are regular educated humans suffering from the same flaws and vices as other regular educated humans?

> She loved cocaine and moly. Currently cycles Adderall and Ritalin (or something very similar) so she doesn’t get too used to one or the other.

Not sure what this is supposed to imply. I expect the same can also be said for at least 20% of doctors, dentists, SV, Big Law, Wall Street and Main Street in the 20-29 age range.

Drug abuse, alcohol abuse, no knowledge of anything real world other than your job, are not qualities of "regular educated people".

They are modern qualities of the loud morality failed majority these days. Just because it's common for celebrities and kids of rich people to do drugs and screw around, doesn't mean that's what my parents expect from their doctors.

> Drug abuse, alcohol abuse, no knowledge of anything real world other than your job, are not qualities of "regular educated people".

Actually they are, your statement applies to any one of the examples I gave you of what society considers successful/prestigious careers. Silicon Valley is the poster child for stimulant and hallucinogen use/abuse, are they not similarly regular educated people?

> Just because it's common for celebrities and kids of rich people to do drugs and screw around

Where are you getting the idea that it's only common amongst celebrities and kids of rich people?

> They are modern qualities of the loud morality failed majority these days.

I don't even know what "loud morality failed majority" means but morality (particularly your personal definition of it) =/= professional competency.

The disconnect here seems to be your expectations (and definition of morality but that's a separate point). Your parents, and you, seem to be unaware of how common stimulant, alcohol and drug use is amongst white-collar professionals.

Sorry to disappoint but as a group physicians are no different. This has no relevance on professional competency. Fun fact for you the "fathers of modern medicine" who have all the diseases named after them and designed the residency education system were all overt cocaine addicts, thats part of why the hours are so long.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7828946/

Jesus man. I understand that degenerate behavior is common in today's doctors. That was my entire point of the original post. Otherwise what would I really be saying? That I knew ONE almost drug addict doctor that looks forward to her next festival? Obviously one of everything exists.

My point about celebrities and rich famous people was that they normalized it, to the point that you aren't even surprised doctors are druggies in their free time.

No one cars that some Uber programmer is on speed. More people would care to know that their doctor that recommends heart pressure medication is a druggy, because they'd know this personal doesn't really care about potential kidney damage in themselves, so of course they'll recommend you take kidney damaging heart medication without really explaining that that's what is happening.

If you left the SV and internet bubble, you'd learn that drug use and alcohol use is not liked by most in their higher level professionals.

This sounds more like you are bitter about an ex than anything else.

I see doctors a bit like car mechanics. While car engineers would probably more be something like biologists.

Women in particular get a lot of 'mental' diagnoses for actual physical ailments. Endometriosis seems to be one of those terrible things that women are told to suffer with, then later if they have exploratory surgery they find terrible lesions inside their body.

Is she vaccinated with mRNA?

She is now, but was infected with the virus before she got the vaccine. The vaccine was available but unfortunately she was hesitant about getting it due to all of the noise online and in the news. She was vaccinated about 4mo after being infected and had already been experiencing Long Covid symptoms.

If she was vaccinated after infection, she probably has enough level of antibodies. (1,2) I hope she consult that with her doctor rather than online noise as you think.

(1) https://www.medrxiv.org/content/10.1101/2021.12.04.21267114v... (2) https://www.medrxiv.org/content/10.1101/2021.09.12.21263461v...

I think it's simply because no normal human wants to know that they're permanently damaged. It's a real tough pill to swallow. You have to be very comfortable with your own mortality.

Because I've been running from doctor to doctor for years without results - because they won't test for anything other than the regular stuff, like blood tests, heart issues, etc. My boss doesn't believe me since CFS or burnout couldn't possibly exist, you just need to focus on your work more. Everytime I say I can't go out since I'm too tired I get made fun of or have eyes rolled at me.

It's like denying someone has a broken arm and gets ridiculed for not wanting to play tennis.

You should read Howard Bloom's advice on CFS. He basically says you have to become your own doctor and use medical professionals as your council.

https://forums.phoenixrising.me/attachments/howard-bloom-cfs...

There is evidence that at least some incidence of obesity are tied to adenovirus 36

https://www.nature.com/articles/s41366-021-00805-6

> mentioned being sick in his documentary "Still"

I just saw this and he doesn't say that. He says that he was drinking with Woody Harrelson, had to be helped into his suite by a bodyguard and "I woke with a monster hangover" when he first noticed the auto-animated finger.

> where other crew members also have Parkinsons

Michael J. Fox himself throws some cold water over this to avoid over-extrapolating:

"Believe it or not, from a scientific point of view, that's not significant."[4] Donald Calne, a Vancouver neurologist, said the incidence of Parkinson's in society is about 1 in 300, but that four of the 125 people on the Vancouver set of Leo and Me developed the disease. Calne said, "It could be coincidence. But it's intriguing, it might be something they were exposed to."

It is briefly mentioned when he is talking about his “workaholism” when he was young and also part of many articles on this phenomena. See the wiki page for sources.

> So what about Fox and the suspected Leo and Me cluster? Did they all breathe in some environmental toxin in the studio? Or did they perhaps pass the disease to each other? One theory, that has been around for years, is that Parkinson's could be caused - or perhaps triggered - by a viral infection, maybe even influenza.

> Dr Donald Calne, of the University of British Columbia Hospital, is treating two of the cast of Leo and Me. He told the Chicago Sun-Times that studies have found there to be an increased risk of clusters among certain workers who operate closely together - principally teachers, medical workers, loggers and miners. They could, the theory goes, be exposed to more viruses than most people, and this might cause them to develop the disease.

> It is briefly mentioned when he is talking about his “workaholism”

You'll have to timestamp or quote it because I don't see it. I have searched the subtitles. No relevant mention of sick, ill, flu, work etc.

Sorry I don’t have time right now. Perhaps I misremembered, but thought he said he would often sleep off illness in the car when the driver would take him to and from gigs when he was a teen. I trust you looked.

He talks about working two jobs but this was during Family Ties & Back to the Future, 6 years before his symptoms. He describes sleeping in the car but no mention of illness. At best it's "can't be good can it?" and "confused about which set I was on" but no mention of sickness. Were this to be a cause, and I don't there is any evidence to suggest it is but I feel the doc wishes to insinuate so, it would be a stress/sleep/overwork type risk factor.

I would note the irony that you bemoan people for not believing something when the evidence you cite isn't there - it suggests more caution is required! From my own reading, that sums up the topic: people are open to viral theories but the proof just isn't there yet so believing it is premature. Parkinson's remains poorly understood in both mechanism and cause. It is said to be "a combination of genetic and environmental factors which might include pesticides and head injury". I imagine post-viral consequences could fit within head-injury type risk factors but we are not at a position to make statements of fact about such things.

Here's two studies. Thanks for the feedback. I choose to bemoan those who deny it completely and will continue to do so. Not those who keep an open mind.

https://pubmed.ncbi.nlm.nih.gov/22753266/

https://jamanetwork.com/journals/jamaneurology/fullarticle/2...

> It is beyond me how people can deny post viral syndromes.

If there’s anything the mass death and injury of COVID have taught me, it’s that there is pretty much no level of harm that can’t be justified with appeals to “they deserve it because X”, with X being whatever quality or characteristic allows someone to rationalize away the fundamentally random and widespread harm as being limited to an out-group. This should’ve been obvious to everyone from the HIV/AIDS crisis, but it’s bluntly apparent now.

This is the scary thing about people. We're a pretty horrible species. This is how they justify genocides.

People denied Covid and often deny anything that forces them to confront uncomfortable truths. It’s a coping mechanism.

It wasn't that well known until the people that have been trying to minimize covid since day 1 started talking about it.

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