Long Covid in the media and social media 2023

Kind of ironic when you think about it, that with the dominant model of chronic illness being mostly about fear, or whatever, it's almost exclusively ever mentioned by medical and public health authorities as a fear tactic to get people vaccinated. I'd say something about 90% of such mentions are exclusively framed this way. And here with "think of the kids".

Which is wholly incoherent. They constantly downplay it, minimize it, refuse to count it, mostly don't bother diagnosing it, in most cases straight up deny it, again ironically as just fear/anxiety/whatever. But, sure, use it as a way to convince people to get vaccinated. That'll work. Not much different than ancient societies run by cultist astrologers, really.

https://twitter.com/user/status/1737972974857122040

 

The main objective of modern propaganda is to destroy the very concept of knowable truth. It's not 1984, where A truth is brutally enforced. Rather it's to promote multiple versions and variations of lies that are close to the truth, so that people simply give up believing in anything. This is how societies crumble, how dictatorships rise, how people simply stop listening to authorities because why should they?

On a very related topic, and keeping in mind that in the first year of Long Covid, basically everyone presenting to a doctor with symptoms lasting more than 2 weeks was pretty much bluntly told that it's impossible, that viruses don't do that, and that they probably didn't have COVID anyway because not been to China/not 70+/whatever doesn't matter.

Also that most people with chronic symptoms are still being told that. Still anxiety/lockdown depression/somatization/whatever don't care. Or only if they were hospitalized. Or whatever gets them to shut up about it and back to work.

In addition to, you know, us, being told that it's silly to attribute symptoms to infections past the acute phase.

Have your cold or flu symptoms lingered this winter? Doctors explain why.
https://www.nbcnews.com/health/heal...ss-symptoms-linger-doctors-explain-rcna130430

3 winter of immunity debt, still pushing it because whatever:

People are exposed to Influenza viruses on average every 8-10 years, but whatever:

Yes, 2022, lots of social distancing and masking. Of course.

Having left all the horses out of the barn, experts warn about the danger of roaming horses. Roaming horses, experts remind people, are not a danger to anyone. All the horses are in the barn. The barn is empty of horses. Horses are not found in barns. Be warned if you near a barn, there may be roaming horses.

I have never seen more contempt for the truth outside of politics. Which I guess means that public health is just politics with a few extra steps.

 

ABC News Long COVID will take your health, your wealth - then it will come for your marriage

quotes:

Now, estimates suggest at least 65 million, perhaps 200 million people have developed long COVID, a complex and frightening illness that looks remarkably like myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and other post-viral conditions that rob patients of their ability to think, work and exercise - their life as they knew it.

But long COVID is not just destroying people's health. Behind closed doors, in homes across Australia and abroad, it is irreversibly changing relationships - sometimes for the better, too often for worse.

...

For David Putrino, the "one thing" he wishes people would understand sooner rather than later is the "looming social impact" of long COVID. "I'm talking about the workforce being diminished, the fact that people can't think the way they used to think — we're losing intellectual capital, we're losing physical capital, we're losing social capital," he says.

"And I wish people would understand the urgency of solving this, because what I'm seeing various countries doing in terms of their response to long COVID is they're throwing a token amount of money towards research and saying, 'Well, that will solve it', patting themselves on the back without understanding that this is just as large an existential threat as climate change."

 

Long Covid advocates send “unhappy holiday” cards to their representatives
https://thesicktimes.org/2023/12/26...happy-holiday-cards-to-their-representatives/

This month, the organizers of Long Covid Moonshot put together an “Unhappy Holidays” card, letter, and calling campaign directed at legislators. Some from the international community joined in too, writing cards to their respective governments.

The creative effort featured colorful, funny, and heartbreaking letters from people with Long Covid and their allies to advocate for billions of dollars in annual funding for the disease. Cards were sent across the country to various congresspeople, senators, public health officials, and the White House.

While templates were provided by Long Covid Moonshot, some got even more creative, illustrating their cards with “ghost of Long Covid Christmas” and the never-ending gifts of Long Covid: stacks of medical bills, salt for POTS, bottles of pills and supplements, and the always delicious “symptom soup” for Christmas Eve dinner.
...
She called for Long Covid funding as well as increased ME funding from the NIH, which has historically had some of the lowest funding comparable to disease burden. “If used appropriately,” she wrote, “Ongoing Long Covid research funding will ultimately help all of us living with infection-associated chronic illnesses.”

The card-writing effort piggybacks on Long Covid Moonshot’s first campaign, a telethon last month that made hundreds of calls to legislators across the country to demand more funding and support for Long Covid.​

 

Can't stand talking about people in terms of capital, but it's what's needed to make our case unfortunately. Not a slight on Putrino, who's working hard to get things done for us.

 

I agree. Reducing suffering should be sufficient in itself as reason to act.

 

I think it's the best angle, in fact the only one that matters, and even more so with the fact that this is obviously treatable, since it resolves naturally in most cases.

This isn't like ALS or degenerative diseases. One day we will be able to prevent those, but repairing the damage is probably never going to happen. In our case, all the costs, all the losses, they're a choice. We can treat this, we can fix it all. It's not just for the future, almost everyone suffering from it can be liberated from it and all the economic losses stopped. Any amount spent on it will pay for itself many times over.

The human suffering is clearly a complete bust. It gets some people in the general public to care, but with governments and the medical system they couldn't care less. The latter see so much suffering on a daily basis, suffering they believe in, we don't even rate on their scale.

The true best angle, IMO, will be difficult, as it will require to admit that the pandemic was completely mismanaged from top to bottom, but it's the double hit on health care systems. They added on their workload a strain that they can't handle, healthcare was already not able to meet the basic demand and worked on tight margins, and the added workload is far greater than those margins.

But in addition to that is the hit on their workforce. COVID keeps healthcare workers out of the job on a regular basis, and takes hundreds of thousands, eventually will cross a million and keep going, out for months, with many having to leave the profession entirely. It's the double hit that makes it all unsustainable. One is hard enough, but both combined in a profession where scarcity is the default and training new workers takes a decade, it's simply too obvious how they can't go on like this.

Not that it all matters much since there's really no way to make them understand it, they just refuse to see it. In part because they are so overwhelmed by that added strain that they can't be bothered to look. This is a profession that bizarrely will choose to work harder every time over working smarter. I just don't get it.

 

medscape Long COVID: New Info on Who Is Most Likely to Get It


A bit frustrating to read the part about PEM..

Quotes:

While patients who become severely sick and require hospitalization have a higher risk of developing long COVID, this group size is small compared with the much larger number of people infected overall. As a result, despite the lower risk, those who only become mild to moderately sick make up the vast majority of patients in long COVID clinics.

...

Previous studies before and during the pandemic have also found that a substantial subset of patients with myalgic encephalomyelitis/chronic fatigue syndrome, which shares many similarities with long COVID, also have connective tissue/hypermobility disorders.

...

"The chronic inflammation that's associated with COVID — this will make people feel more depressed because they're not getting the neurotransmitters in their brain releasing at the right times."

It may also put patients at a risk for anxiety due to fears of post-exertional malaise (PEM), where symptoms worsen after even very minor physical or mental exertion and can last days or weeks.

"You can see how that leads to a bit of a vicious cycle," said Bayley, explaining that the cycle of fear and avoidance makes patients less active and deconditioned. But he added that learning to manage their activity can actually help mitigate PEM due to the anti-inflammatory effects of exercise, its positive impact on mood, and benefits to the immune and cardiovascular systems.

 

No money in that if your only qualification is to make things sound sciencey.

 

https://twitter.com/user/status/1736910738076176545

 

when oh when will the seemingly never ending torrent of effluent about fear avoidance cease.

How much more can we take, really, i mean how long must we endure it, they pour it out, and then just keep making more, and more and more it feels exponential. Our heads are bleeding from banging our heads against the wall day after day yr after yr, but still it just keeps coming.

 

It's a very pervasive paradigm that needs to be weeded out root and stem from public perception. That'll take some doing as it's part and parcel in almost any discussion on not just disease but also on wealth inequality. Always have to fight harder or work harder and you'll make it.

 

From Germany:

taz: Die Statistik ist kurzatmig
Google translation: The statistics are short-winded

Again, some media or scientists argued: If post-viral illnesses were a serious problem, companies would have to sound the alarm and the failure statistics would explode because of the high sickness rates. The error lies in the reverse. Since neither happens, there is no problem? Incorrect. Anyone who argues like this overlooks how bad the data situation is and the distortions that the existing statistics are subject to.

...


It cannot be a solution to “squeeze the desired performance out of people”. Although these would somehow work in the short term at work, Walter does not classify this as sustainable. For example, he called for new models for professional reintegration. It is important to accept that people with long-term consequences of Corona will only be able to get back into work much more slowly than others, and that many will not be able to return to their full capacity in the foreseeable future. “If we ignore this in terms of economic development and the shortage of skilled workers, we will only make the problem worse,” says Walter.

...

Because so many questions are unanswered and so much data is so unreliable, Long Covid regularly invites people to develop wild theses. Some studies have already described the syndrome as a phenomenon among educated white people, which also occurs much more frequently in rich countries - which in turn was used as an indication that the symptoms must have purely psychological causes. A large majority of scientists have long since said goodbye to this, and anyone who hears the reports from those affected and the doctors treating them knows why Long Covid does not occur equally in all professions.

There are also explanations for the regional differences. A commentary in the journal The Lancet pointed out what the thesis of the problem of wealthy areas of the Global North misses: For example, that in countries with low wealth there is often less research, fewer contact points for care and poorer data collection. An even worse one, that would probably mean.

 

I know they only use it as an example, but this error of thinking is just so damn common and it's truly absurd that we still have to deal with it. Who sounded the alarm about AIDS? AIDS victims and their loved ones. That's it. It took years until anyone else joined in, and there were major cultural circumstances leading to it, and I'm about 99% convinced that if it wasn't for HIV being a direct physical threat from any contact with blood or the impact on the blood supply, it'd have largely been ignored and still no progress would have been made. We would simply have "lived with HIV".

The truth is that the threshold for "if it were truly that bad, people would sound the alarm" is just ridiculously high, and it's almost always personal. And even when that threshold is crossed, the bar can simply be raised, e.g. COVID. There was some alarm at first because there was a feeling that possibly no one was safe from it. Then the harm mostly remained, but the alarm was simply unplugged and basically all the mistakes were made.

"Surely the authorities would do something if they knew". Well, no, Shirley, they wouldn't, because everyone is winging it all the time and most people really don't have a clue about what they're doing at the time they're doing it. It's only long after it's over that people can tell the truth about what happened, including to themselves. And even then.

 

Oh, that's far from the only reason why many are arguing that it has psychological causes, although the "purely" here is just red herring, everyone pushing psychosomatic ideology has the same spiel about biopsychosocial causes, nevermind that psychological carries 99.9% of the weight. They may actually believe that psychological stress can cause the biological changes, but it's just rationalization.

Still the old myths about "yuppie flu" remain. In fact it's the preferred one in the right-wing griftosphere, and with Internet trolls and the conspiracy crowds. Alongside with the vaccine causing all of it, which doesn't exist anyway, of course. And those myths were invented and perpetuated by medicine, and the old lies still carry a lot of weight. But there really are multiple excuses that medical professionals use to justify their beliefs that it's psychological, white yuppies is just one of many, and the "women be hysterical" is still very much as alive as it ever was. To a person with chronic illness, there is no difference today.

To pretend that medicine is on the borders of this is dishonest. All those myths were invented by MDs, perpetuated by medical systems and are in fact still harshly defended, in public and in private. If you go into medical communities where they talk about Long Covid, all those myths, and especially the one about "people who can't handle the stress of normal life", still dominate all conversations of the topic. And that doesn't even speak of countries where they mock the entire concept as ye old mass hysteria.

Long Covid sure invites people to develop wild theses. Almost all those theses were invented by, and are commonly asserted by MDs. And Internet trolls. And conspiracy crowds. The only instance in the modern world where there is any overlap between reactionaries and an expert model, let alone a dominant one. To pretend any of this is over is why nothing changes. There are articles writing those very words going back to even before the time of the grand psychologization project.

 

There's a fair bit of vague rehabilitation and CBT-ish programs in there, plus some weird stuff (like a million pounds for weight loss for LC), but the bulk of it just went to not particularly useful stuff, like CLoCk and many similar symptom studies, vague research about comparing LC treatment centres, interviews about social support, platforms for clinical trials (but not trials themselves), a lot of money for REACT, and so on. That's just the NIHR part.

Pretty dismal, but then probably better than the NIH debacle.