Long Covid in the media and social media 2022

A/Prof in computational statistics at Toronto.

https://twitter.com/user/status/1578152866698919938

 

CDC: Majority of Adults with Long COVID-19 Report Trouble Performing Daily Activities
More than 80% of adults with long COVID say their long-term symptoms have reduced their ability to carry out daily activities.

https://www.usnews.com/news/health-...19-report-trouble-performing-daily-activities

https://www.cdc.gov/nchs/covid19/pulse/long-covid.htm

 

Here's a slightly longer news article about that CDC survey of Long Covid patients.

https://www.axios.com/2022/10/06/long-covid-cdc-data-disabling

Mentions "chronic fatigue syndrome" (not ME/CFS) and then uses "chronic fatigue" just a few lines later

An excerpt:

 

The first big picture sentence is pretty decent: they got PEM in there - yay. I might be inclined to give them a pass on the later point, ie allowing that chronic-fatigue-the-symptom, whether from ME or lupus, Sjogrens, MS or whatever, has been largely misunderstood and mismanaged.

 

They might do a correction/edit if someone pointed it out to explain the issue. I think a lot of people just write "chronic fatigue" unthinkingly and are totally happy to correct it.

 

Posting this here as although only tangential to COVID, it provides a useful caution about UK stats post epidemic - very much an outlier when comes to the 'out of work due to illness' figures:

and

 

It's annoying how this fact is so rarely pointed out. Most of the risks people insure themselves against, some of them at a cost of hundreds or even thousands per year, are far less likely than the risk of Long Covid, which people technically pay nothing to insure themselves against.

Risk of flooding? Fire? Accidents? Most of those risks are fractions with several significant zeros, very low %. An absolute risk of >1% is the kind of risk that you can't insure against, too risky for an insurer / the policy would be too expensive.

But the possibility of lifelong disability, at about 1%, is fully uninsured, without any protection, in fact with basically negative protections, as the people who manage this risk are actually doing the most they can to maximize it, unwittingly/incompetently.

And the public doesn't know, because the people who manage this risk are not voicing it, are doing everything they can to make it not just more prevalent but far worse off for those who get it.

Then again, if people knew just how bad modern medicine still is at most things, they would be far more careful in everyday life, would do much more to avoid accidents and disease. Instead the opposite seems to happen, with the shortcomings of medicine being mostly an untold secret, most people are generally careless about their health, thinking that if the worst comes, the magic of modern healthcare will handle it. No informed consent here.

 

https://www.cepr.net/report/understanding-and-addressing-long-covid/

I just found this by accident. Can’t see if anyone else has posted it. Quick skim shows they refer to ME/CFS and suggest a range of risk minimisation and resilience strategies. Nothing earth shattering but seems to actually look at what needs to be done.

i know nothing about cepr.net and google tells me it’s cepr.org so…

 

Unprecedented numbers of shows being cancelled. Presumably a mix of long Covid, acute Covid and +/-post-Covid-augmented other infections.

https://twitter.com/user/status/1578564733153968129

 

Some fan groups have been making and sharing "covid bingo cards" on social media, documenting confirmed covid cases after shows, in order to encourage people to get tested, isolate, wear masks etc. Here's an example from July (Krakow, Poland).

https://twitter.com/user/status/1551539011705094144

(P.S. There are plenty of alternative speculations and conspiracy theories regarding this as well, the fact that so many shows are suddenly being cancelled on the same day. Some believe it could have something to do with the music company that owns the record labels in question, ongoing court cases and certain very serious allegations that have been raised against them recently. See for example Rebecca Ferguson's story on TikTok.)

 

Keiko vs. Kat Rosenfield

https://twitter.com/user/status/1578674894962798592

 

Chris Cuomo (himself having/had LC) interviewing Dr William Li about this "new", "mysterious" disease that doctors are "starting to see" now that they're "getting back in to the game" after focusing til now on the acute effects. Dr Li comments that he's seeing patients whose lives are ruined.

https://www.newsnationnow.com/cuomo-show/long-covid-believed-to-be-impacting-30-million-americans/ (5 min)

 

Wow, that was pretty good coverage. Dr. Li said that Long Covid is absolutely a real condition:

He emphasizes that Covid causes unambiguously physical issues, such as diabetes in children and teens, heart problems and strokes in middle age, and Alzheimer's Disease in older people.

While he doesn't mention ME, he says we need to research treatments, and he doesn't mince words about how serious long Covid is:

 

A doctor’s humbling journey treating long Covid: ‘The second we think we know what we are doing, we fall flat on our face’

https://www.statnews.com/2022/10/10...w-what-we-are-doing-we-fall-flat-on-our-face/

 

https://twitter.com/user/status/1487473237906886657

 

Long Lyme? Amy Proal used that re-branding, I think. To me it's like saying Long Syphilis. It just isn't right.

 

In reference to the pre-print: Comprehensive identification of Long Covid articles with human-in-the-loop machine learning

https://twitter.com/user/status/1578054746631553024

 

I found the passage on how he ended up on social media interesting. I also did a 180 from a very anti position to see the benefits of rapid information dissemination (and all the risks needless to say).

 

There's been some push-back against the ignorant remarks from Australia's CMO (discussed here):