Long Covid in the media and social media 2023

Unsure about this, especially how much resources were spent on this. I saw something about the WHO promoting it, which would be a ridiculous waste of effort. But if it's just an awareness campaign from gamers it could be sort of useful:

For context, Elden Ring is one of the most popular games of the last 2 years, best-selling, award-winning. It's in a category of games that are very difficult and challenging. No easy mode available. It's a game that is meant to be hard and doesn't forgive even tiny mistakes, "git gud" is the response to people saying they find it too hard. Every single enemy can kill the player if they are not careful, no matter how powered-up they are. It can be very frustrating to play for that reason, and most of those who crave this type of game are in it for the reward of completing a hard challenge. It's worth it exactly because it was hard.

So depending on how the mode is implemented, if it's done in a way that basically makes it impossible to play, adding extra difficulty on top of a game that is meant to be at the high limit of difficulty, it could be somewhat useful at communicating the difficulties. Because in this type of game you die a lot. Like every few minutes. And every time you die you have to go back to the last point where you succeeded. If you cannot pass the next challenge, you are stuck. No cheat codes. No lowering difficulty. You are just forever stuck at the same place.

I just really hope the WHO has put no resources into this and was just messaging about it. Because although this could be nice, it's amateur-grade work. We need professional-grade effort from medical professionals. Everything else makes zero difference in our lives. We haven't seen any professional-grade work yet.

 

That twitter link doesn't seem to work for me. Perhaps the tweet was deleted? Or user was suspended?

Do you remember what it said?

(I've added the twitter link below in case maybe it's just me)

 

Thanks, I did briefly wonder if maybe it was something in my browser (blocking trackers or something like that).

 

oh, that's strange..
yes, seems it might have been deleted. I think it was WHO Europe who had shared a link about Long Covid and gaming, that gaming universes had made a "long Covid" mode to increase awareness. @rvallee knows more about it and shared both a tweet with working link as well as providing more context in the post above. I think this also was the tweet that was retweeted by WHO.

 

I saw this on Twitter and just cringed. Two of the three game mods (for Witcher 3 and Elden Ring) are on Nexus, a big game mod site, where I am also a game modder, and I know they can be a tough crowd. And predictably, both mods have received a good deal of negative feedback, eg from Long COVID deniers, to the point that one of the modders had to start removing the worst comments.

As well as my feeling bad over the demoralising of the people who took the time to make these mods, I (and I'd guess most people) can't see the point of this. I guess the WHO thought it was a 'nice idea' (nice publicity) but really it feels patronising to sufferers. What is the target audience? Who would want to play these? Each of the two mods has only received one 'Endorsement' (thanks) and about a dozen downloads as of this post, and Nexus is a BIG popular game mods site with tons of mods and tons of members. So it looks like these mods are not exactly taking off with players. I do feel bad for the modders who got roped into this.

 

Assume it's being described in this German YouTube.

 

I found out about the game mods from this tweet, which has a screenshot of WHO's tweet rather than the live tweet. I took a quick look through WHO/Europe's timeline but couldn't find the tweet, so I wonder if that was the above mentioned tweet that has disappeared? Maybe they got too many critical replies and deleted it.

ETA: You need to click on the screenshot to see the whole image of the WHO/Europe tweet - for some reason, it displays on this site with the top half of it blocked off.

For those who want the plain text, the top part says "Ever wondered what it must be like living with Long COVID? Very soon you'll be able to find out - virtually! WHO/Europe partner LongCOVIDEurope has developed #LongCOVIDMode to experience it through your favorite gaming characters."

 

Yes, that's the Witcher 3 long COVID mod. (In German, have to enable English subtitles if you don't speak the lingo!)

 

Disappointing but probably true: https://twitter.com/user/status/1656912104694194178


For anyone not aware, Danny Altmann is a professor of immunology and a prominent member of indie SAGE who has said and done some helpful things re. long Covid and ME/CFS.

(His responses to my email to Independent SAGE on LC and ME/CFS: https://www.s4me.info/threads/united-kingdom-independent-sage.24432/page-3#post-404490)

 

Yeah we are on our own funding this. And doing most of the work. And the awareness. But that's been clear for a long time. It's almost funny to speak of research funding having dried up in the UK when it's a huge stretch to pretend they even funded anything. Most of it was wasted on BPS junk pet projects.

Even with stuff like this, I don't even believe them. We've seen the same dynamic play every single time: someone says they decided to do something, nothing comes out of it, rinse, repeat.

https://twitter.com/user/status/1657747970647891968


The pandemic has been completely politicized, including by every single public health office in the world. We had a short window of opportunity, it's completely shut now. Fortunately we have a lot of good research on the way and technology will keep allowing us to do more with less, but the medical profession will play no official part in this.

If there's one thing humans are good at, it's negating the humanity of others. We're still at this stage, clothed well-fed barbarians at the best of times.

 

Forget hard mode- you can now play these video games on "Long Covid Mode" to experience what patients do

“The challenges presented by Long COVID and other invisible post-acute infection syndromes like ME/CFS forced us to find novel means to show people without this experience what it really feels like to live with such a debilitating condition,” Ann Li, co-chair of Long COVID Europe, the group behind the project, said in the release.

In The Witcher 3, one of the impacts of playing under Long COVID Mode is four stage of exertion: fatigue, exhaustion, myalgia and PEM, which each progressively make the game harder. In Minecraft, some of the effects of the mods include the player not being able to stay underwater for as long and experiencing a brief immobility after quick movements to show the impact of shortness of breath.


https://www.ctvnews.ca/sci-tech/forget-hard-mode-you-can-now-play-these-video-games-on-long-covid-mode-to-experience-what-patients-do-1.6397433#:~:text=These are some of the,real-life long COVID symptoms.

I see that it was already posted earlier in the thread.

 

I guess we really have Truthiness-based medicine. Doesn't even matter what's real or valid. It's all just feels. We're all just breathing out of sync. Or our karmas are unaligned. Or we have strayed from divine grace. Literally any dumb nonsense as long as it feels like it doesn't cost a lot, and as long as no one actually counts how much it really costs. Moral calculation aside, clearly not even a concern.

https://twitter.com/user/status/1657846383066357761

 

This is my transcript of an article which was on BBCNEWS24 today. I felt it touched on sensitive areas to do with employment, ability and disability with a subtext re: benefits and in selectively quoting a health professional effectively lumped longcovid and rheumatic conditions which may be related, in with stress related PTSD and mental health issues.

Which I feel is dog-whistle, class error ridden journalism following the same road to hell as the BPS people who will tell you its all in your head, when it most definitely is immunological.

EDIT
I have sent a comment to the BBC
UPDATE
Had to resend it as the comments web portal did not confirm receipt. So I found an email address and was able to escape the 2000 character limit and be slightly less terse and more politic. I have updated the text below. + Received acknowledgement so they did receive this.

 

WTF is this nonsense? We are supposed to have left the world of angels and fairies, not to replace them with other generic BS.

It's the ease with which people BS about this that is terrifying. It comes so naturally. It's like health and medicine are fair game to talk nonsense, as long as it's the kind that places all the blame on the victims. What an ugly system.

 

https://twitter.com/user/status/1658501937510117378

 

https://twitter.com/user/status/1658494998206095360

 

Won't even bother reading this. More simply to collect how silly things can get. There doesn't seem to be a limit that won't be crossed in excusing failure. I think the profession has completely lost its mind and legitimacy, but it is serving politicians who also badly want to cover up the failure so that's just great.

Medicine is supposed to be based on science. This is BS pseudoscience. The whole credibility of the entire profession is built on a false premise, you can't do both science and pseudoscience, they are mutually exclusive. We basically need medical AIs to save us from the incompetence of the medical profession. What a time to be alive.

https://twitter.com/user/status/1658442717511274498


https://www.thetimes.co.uk/article/exhausted-you-may-have-hyper-fatigue-jc9dmvmbg

Thread here:
Times (Peta Bee) Exhausted? You may have hyper-fatigue