Long Covid in the media and social media 2022

Presumably Flottorp's opinions, presented as facts, represent a synthesis of all available evidence, irrespective of quality or relevance.

 

Not the first time I've seen commentary on striking rapid decline in diagnosed dementia patients, from professionals who have career-long perspectives on this. Some replies in-thread are corroborative.

https://twitter.com/user/status/1559615934599405568

https://twitter.com/user/status/1559671925286248449

https://twitter.com/user/status/1559673274526736387

 

This obsession is so bizarre and out of place. Awareness campaigns against things like drunk driving will often feature the scariest possible outcomes for what is an everyday thing for most people. Risks literally have to be constantly emphasized so that people are reminded of them. It doesn't even make sense, it's literally avoiding telling the truth because the common folk can't handle the truth, treating everyone like children.

It's truly one of the most bizarre obsessions in modern life and it seems to basically rule all healthcare, the need to minimize real risks while obsessing even more on completely imaginary threats. It effectively places imaginary fear-causing-illness, not a thing, as far more important than actual ruinous chronic illness. Incredibly misplaced priorities based on belief systems. What an awful mess.

 

The lack of understanding and appropriate messaging and warnings by the medical profession continues to cause harm. Unsure if this is happening more than we know, but even some LC patients attempting a form of GET on themselves. Spoiler, it doesn't help.

https://twitter.com/user/status/1559910334869422083

 

News article about the Swedish Covid Association's recent survey

Enkätundersökning: Var fjärde med postcovid måste sluta jobba
https://www.svt.se/nyheter/lokalt/ost/enkatundersokning-var-fjarde-med-postcovid-maste-sluta-jobba

 

More about post covid on the news in Sweden:

Linda, 34: ”Hela livet har förändrats”
https://www.svt.se/nyheter/lokalt/ost/hela-livet-har-forandrats

 

News article about a Swedish long covid study:

Forskare föreslår: Testa alla med symptom efter covid-19
https://www.svt.se/nyheter/lokalt/ost/forskare-foreslar-testa-alla-med-symptom-efter-covid-19

 

I lived like this for the three years between getting sick and learning what ME was. It was horrible, and I'm extremely lucky I didn't get permanently worse. I wouldn't wish this on anybody. We need more awareness of PEM.

 

just found this on a patient support forum site

"myalgic encephalomyelitis

• Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms. The most common symptom is extreme tiredness. CFS is also known as ME, which stands for myalgic encephalomyelitis."

there is feedback facility but you have to sign up.

(curious to know what this thread is about "This site only serves to confuse me thus far.")

https://www.smartpatients.com/conversations/this-site-only-serves-to-confu

 

Seems like Twitter is censoring research articles about Long Covid. I've seen several of them before being marked as misleading because of vaccines, even though the tweet was not about vaccines. I assume this is a filter improperly tuned, but it seems to catch anything having to do with any health problems after Covid or vaccines.

I've also seen other flags like this on otherwise real information. Recently some tweets got moderated out for pointing out how the CDC recently rewrote out monkeypox being airborne. As in literally they recently removed every mention of it in most guidance. Public health is now 99% public relations, everything is about pretending everything is alright. Except lockdowns and measures, those are agents of doooooooom.

What a mess, we are a bunch of toddlers wrecking ourselves:
https://twitter.com/user/status/1560376853197496320

 

https://www.webmd.com/lung/news/20220818/other-viruses-offer-hints-mystery-long-covid

 

Amazing. Build useless clinics. Argue the clinics are useless so nothing should be done. It's true that the clinics are useless, they are built to provide useless services, don't learn and are based on debunked pseudoscience. And that's used to argue to completely cease doing anything. Amazing. Just like in politics: run a public service poorly so it can be privatized for profit.

So long, Covid clinics
https://www.pulsetoday.co.uk/views/copperfield/so-long-covid-clinics/

I’m not surprised that more than one in ten GP referrals to Long Covid clinics are rejected. And, frankly, I don’t care.

Not surprised, because having only 10% of referrals bounced back in these days of pandemic box-ticking and mandated A&G is a bit of a result.

And don’t really care because, in all honesty, a more logical rejection rate would be 100%. By which I mean that these clinics seem to be an exercise in futility.

This was brought home to me recently by one of the few patients I have actually sent to a Long Covid clinic. After the obligatory and labyrinthine pre-referral polyinvestogram hoop-jumping exercise, he was distinctly unimpressed by his eventual assessment and treatment, which apparently amounted to a phone-call, an emailed PowerPoint and a weblink.

This is definitely not the fault of the Long Covid clinic. We’re dealing here with a disease with no clear definition, no diagnostic test and no specific treatment. Try running a clinic on that basis.

Plus, of course, there’s the thorny issue of self-selection. Such diagnostic criteria as there are pretty much amount to, ‘I think I’ve had Covid and I now think I have Long Covid’. And while there is clearly a cohort of patients who don’t have a demonstrable post-Covid complication but do have some form of debilitating post-viral syndrome, there also exists a significant number of TATT chancers delighted to latch onto a zeitgeisty label to validate their symptoms, with a view to pursuing any number of possible agendas.

All of which means, I think, that Long Covid clinics are a waste of time, money and energy, resources which the NHS is already creakingly short of. Besides, I suspect these clinics were set up largely to act as a conscience-salving penance for a Government feeling guilty about mid-Covid cock-ups rather than to actually help Coviddy patients.

The result is a service which is over-sold to the public and set up to fail. It needs scrapping. So long, Long Covid clinics.​

You have to marvel at this:

Of course it's the fault of the clinics. And whoever designed the clinics. And runs the clinics. And is forcing ideological nonsense to begin with. How do these people think other diseases became understood? By jerking around waiting for the sky to give the answer?

Obviously this person understands that the way to gain expertise and develop effective skills and treatments starts not knowing anything. This is how everything works. But it's also true that the clinics were built to fail, and this is 100% the fault of the people responsible for the healthcare system. Which clearly is no one.

Again continues the principle that medicine is completely above any criticism, where failure is always other people's fault, even after not trying, even after building fake clinics on debunked ideology? Still everyone's fault but medicine. Amazing. This is a profession in crisis, having plateaued for too long and unable to make any move in any direction that doesn't loop back to familiar failure.

 

Copperfield wrote nasty things about people with ME in the past.

e.g.
"Question: What would be your initial response to a patient presenting with a self-diagnosis of ME? Possible answers:

a) Are you by any chance a teacher?
b) Thank you for making the effort to come along. I am sure we will be able to help.
c) For God's sake, pull yourself together, you piece of pond life.
d) Well, lets just explore that, shall we?"


(The `correct' answer was (c).
Dr Tony Copperfield (a pseudonym), described as being a GP in Essex, in Doctor magazine, 2000.

 

Taylor Lorenz retweeted Jaime S tweet posted above.
https://twitter.com/user/status/1560419192465022977


ETA Taylor Lorenz is a media/tech reporter for the Washington Post. She tends to get embroiled in a lot of controversies.

https://en.m.wikipedia.org/wiki/Taylor_Lorenz

 

Disgraceful.

As opposed to the PACE trial et al, which is futility in exercise.

 

I think I understand what's going on.

The widespread denial of LC has lead the antivaccine folks to try to fill the void, pushing the idea that it's not infections causing all those problems, especially heart problems, it's the vaccines. I see the warnings being about vaccines even when the tweet and article have nothing to do with vaccination. It's probably a simple keyword filter with a few conditions.

Platforms like Twitter have to push back against real disinformation, and probably end up flagging lots of LC content. Now here's the beauty, that since LC denial is widespread and this moderation relies mostly on reports, it's easy to abuse this. So it's probably the result of people reporting, being flagged as vaccine disinformation, and Twitter doesn't have the human resources to check all of this, especially with the mountains of reports on actual disinformation.

There are plenty of articles and papers pushing denial, I commonly see comments saying it's proven to be psychogenic. From official sources. Which Twitter relies on to verify. Sources that say contradictory things. Which is great. So yay modern propaganda and mass disinformation.

 

Private Eye 12th August 2022