Long Covid in the media and social media 2023

Thanks for posting that link @Kalliope

I know that media outlets love clickbait so I should not be surprised by the "Is it real?" framing. But it's so annoying.

How a subject is framed makes a huge difference in how it is discussed. If you put that old idea in someone's mind it will compete with all the new information that's being presented (e.g., don't think of a pink elephant).

It's not much different from those old articles in US publications that used to say,

"Chronic Fatigue Syndrome, once called 'Yuppie Flu' ..." ​

Adding that line does not help to refute the old label. It needlessly introduces stigma. ("Hmm, this is controversial, some people don't think it's real...")

Same thing with "Is it real?" in this headline.

I will note that on the author's substack there is a completely different title - Exclusive Interview with Dr. Anthony Fauci on his Perspectives on Long Covid:

https://emilymendenhall.substack.com/p/exclusive-interview-with-dr-anthony

 

The article is now titled, "What Tony Fauci Told Me About Long COVID and Other Postviral Illnesses"

 

https://twitter.com/user/status/1723200521924952433

 

I wish brain fog had only taken 10 years of cognitive decline. How sweet would that have been. I was in my 20's, and you don't see this kind of decline without dementia until the 80's, so it caused a good 60 years of mental decline. My father is 77 and has not seen anywhere close to this.

Anyway, on unrelated note, I don't think I've seen this yet: a campaign to phone bank US elected officials for an AIDS-like "Moon shot" to research Long Covid, next Tuesday. $1B/y is cheap when you factor in the trillions already lost. But if those efforts could be made global, if medicine were not so provincial, with everyone doing their special thing in their own corner, it's sad to think of all the progress that could have been made. The money put into medical research is truly pathetic, no wonder things progress so slowly. In addition to all the pointless nonsense and politics.

https://twitter.com/user/status/1723421383353319830

 

https://twitter.com/user/status/1724001792793432543

 

NYT: Can’t Think, Can’t Remember: More Americans Say They’re in a Cognitive Fog (unlock share link)

Adults in their 20s, 30s and 40s are driving the trend. Researchers point to long Covid as a major cause.

(Also discusses ADHD and the inevitable "psychological distress associated with the pandemic.)

 

NZ's The Post: Here’s why you really don’t want to get Long Covid

Louise Thornley is a science communicator with a background in public health.

I’ve had to give up my job, and go onto a benefit from Work and Income. My social life has shrunk because I don’t have the energy. This year I missed a planned trip and five 50th celebrations. This life-changing sickness stops us from doing what we want. The loss is profound.

For me, Covid came after 12 years of ME/CFS (formerly “chronic fatigue syndrome”) and fibromyalgia. These related conditions upped my chances of Long Covid.

I’m only in the “mild to moderate” box. Others have it far worse: a quarter of people with ME are confined to home or bed.

 

A new Piece written in Time titled "Long COVID Reseearch Needs a Radical New Approach"- “How to End the Futile Blame Game Over Failed Long COVID Research” has been published.

The article uses ME/CFS as example why there should be less biomedical research and instead a focus on things such as “social science research on actionable solutions applicable to at-risk subgroups”.

Aka “Biomedical research into ME/CFS has been historically underfunded and neglected leading to a disastrous outcome. Since LC is similar one should apply the same unsuccessful strategy here. Our Radical New Approach is the same old approach that is ineffective with every other disease."

The complete and utter ignoring of reality and the lack of any sensical argumentation continues…

 

'We didn't look very hard for anything therefore there's nothing there, don't ask us to look harder just think better thoughts and get off the couch'

I actually skimned most of this article before realising it was BPS. The dawning realisation was quite unpleasant.

What is terrifying is how many doctors believe this nonsense. I've had the 'researchers haven't found anything' thing parroted at me by a very friendly patronising rheumatologist who manipulated me into keeping pushing and throwing away the last of my functioning.

This bullshit costs lives and livelihoods.

 

TIME -

'How to End the Futile Blame Game Over Failed Long COVID Research'



'..... It is true that ME/CFS is still not well-understood and its research has been chronically underfunded. However there are decades of relevant clinical and research experience that should be productively and rapidly applied to Long COVID.

The established track-record of ME/CFS research exploring cause and pathogenesis has been singularly unproductive.

By analogy, the current research directed at finding diagnostic and mechanistic clues to Long COVID is a resource-intensive, lengthy uncharted process. In the ME/CFS paradigm it will produce further leads for more biomedical research, but with a low ultimate likelihood of helping patients.'





The Authors of the Time Article are:

Phillips M.D.,M.P.H., Vice President Science and Strategy, COVID Collaborative and Fellow of the American College of Epidemiology

Michelle A. Williams Sc.D. is the Joan and Julius Jacobson Professor of Epidemiology and Public Health, and former Dean of the Harvard T.H. Chan School of Public Health




Not a peep about the diversion of ME research resources to unproductive Psycho Social 'treatments'.

 

Damn. What an incredibly naive, and wrong, take. It basically frames science as a belief, rather than a process, and assumes that just caring about the patients will somehow work out. Science always works out in the end, and more often than not it appears not to until it does. But you have to put in a proper effort, and that never happened, and is still not happening. The vast majority of Long Covid research is about trying to find things they already know, they seem unable to think outside of their textbooks.

It's clear that the authors mean well, but it's delusional to think that medicine can achieve anything here with the failed biopsychosocial approach, the very thing that failed. We know this for a fact, it's astounding that they actually use the textbook example of this failure as the model in ME/CFS. This approach has failed miserably with us, and biomedical research has been disastrous largely because of the same attitude expressed in the article: what if it's all for nothing, what if we find nothing? This attitude pervades everything, and sets it all for failure.

Well, then, why do we even bother doing scientific research if the answers don't come easily? Oddly enough, they still present the current paradigm as a novel approach, old wine in the same old bottles. You could hardly find a better example of why "nothing about us without us" is so critical moving forward. When the experts basically mope around whining about how it's so hard and what if they do all this work and find nothing, should it be any surprise that they failed after barely trying? And yet all this biopsychosocial approach truly has been for nothing, and will be for nothing, and it somehow doesn't bother them.

Barely trying for a long time does not add up to the same thing as trying for even a fraction of that time. You could do 1% effort for a century and it would only amount to one year of 100% effort, and 1% is generous here. It all obviously adds up to failure.

And actually there needs to be far more blame here. Experts have failed millions miserably, causing not only a major crisis of suffering, but feeding into the crisis of credibility that plagues clinical research and is stalling progress overall in the discipline. When professionals fail, in every profession but medicine they get heavily blamed. Being a professional isn't just about training, it's especially about responsibility and accountability. In fact it's precisely the lack of any blame for those decades of barely trying that lead to this level of complacency and, ultimately, to failure.

It's a great example of Einstein's quote about insanity being doing the same thing and expecting different results. Medicine really has a lot to learn from humanities, it's too closed off to thinking outside the ideological bubble, and being so walled-off like this has actually lead to their attempts at thinking outside the bubble, like the biopsychosocial model, being even worse than nothing at all.

The patients were right all along. The experts were wrong all along. This is a set of unique circumstances that force a different approach, certainly not one that relies on blindly trusting that the people who got it all wrong will somehow get it right doing the very things that failed. Yet again. And again. And again and again. It's truly baffling seeing this much commitment to being wrong.

 

Actually, while I don't know either author, after reading this article I'm not convinced that they mean well.

I'm not feeling well enough to try to explain why I feel that way. I'm not even sure if I know why I feel that way.

It just doesn't feel like they are trying to help. It does feel like they are trying to save money.

 

As above this is a terrible article.

The irony. And please tell me just how exactly you plan to "improve prognosis" via access to empathetic care.

And then there's this segment:

with its subtext of "of course you dear (white, male, economically privileged) reader don't need to worry about any of this - it won't affect you."

As a counterpoint to "we've done all the research and nothing has been found", have a listen to John Wherry at the start of the year (linked at 20:08). He's a world-leading immunologist who runs a well funded institute and he has a far better understanding of the situation than these authors.

https://www.youtube.com/watch?v=GH55opZ7YVA

The whole thing is a good listen. I would however argue back with his point about not faulting clinicians because the researchers haven't given them the tools. That's a two-way street. The clinicians need to demand the tools in order to be able to care for their patients. Instead they've been happy to spin their wheels and fail their patients with psychosomatic nonsense for decades.

Also highlight this passage from 32:39 which leads in to a theoretical discussion of how SARS could hit-and-run in the genetically predisposed that leads to an ongoing change in the immune system and loss of herpesvirus control that then leads to LC (example norovirus/microbiome/inflammatory bowel disease).

 

Is "Time" actually well-read? I've seen a couple of takes of them this year and they've without exception been terrible in a host of different domains.

 

I mean that I think that they think that they're helping. And I have no doubt about that. People are so freaking weird and can convince themselves of absolutely delusional things. I have no doubt that the patient-hating charlatans pushing the CBT-GET paradigm still believe that they will ultimately proven right. Beliefs make people do awful things.

 

Sadly yes. But like most publications we're still talking about a small % of the US population. The damage is mostly done because those takes are so common and a lot of people seeing them in various places. Magazines no longer have the reach they used to have, though. Most people get their information from TV, and fortunately it's harder to speak such grandiose nonsense as it runs the risk of someone questioning it, poke at the obvious holes, which is easier done when you write a monologue and hide behind editors.

 

I think I see what you mean -- these folks "mean well" in the sense that they think spending money on biomedical research is a waste? And what patients really need is a CBT, GET, psychotherapy, etc.? So they are helping society by saving NIH from wasting money?

Is that right?

Anyway, it's too hard to get my head around this so I'll just let it go for now.