Long Covid in the media and social media 2023

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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:

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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.
 
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ahimsa said:
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)
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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.
 
rvallee said:
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.
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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.
 
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Kalliope said:
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.
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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."

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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.
German health minister said:
It is time that #LongCovid research was intensified worldwide, especially on #ME /CFS. This has now been agreed at the G7 meeting. This is also an invention for the health of women, who are affected much more often.
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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.
 
A nice article on cognitive impairment following covid

Trodde hun var frisk etter korona. Så sviktet hukommelsen totalt.
Thought she was healthy after corona. Then the memory failed completely.

I especially liked that the neurologist was clear this was not due to stress. I hope more professionals realise they have to be clear about this (realized the article was behind paywall so am copying this quote):

"– Årsakene er sammensatt. Men det store bildet nå tyder på at dette i mange tilfeller er relatert til ettervirkninger etter covid-infeksjon, og ikke kun uspesifikke faktorer som psykiske belastninger og generelt stress."

"The causes are complex. But the larger picture now indicate that this is in many cases related to sequalea after covid infection, and not just unspecific factors like psychological stressors or general stress."
 
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.
 
Robert 1973 said:
Disappointing but probably true:

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)
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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.
The explanation to me was all they need is exercises to learn to breathe in sync again. Naturally, I was unimpressed. Nothing wrong with respiratory physio but the notion that this is all that’s wrong and resp physio will cure everyone is ridiculous.
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COMMENTATOR Ben King, 13:06 BBC News24 16 May 2023

... millions of people left the workforce during the pandemic. Today's figures show students, carers and even some retired people coming back to work but the numbers of long term sick rose sharply to two and a half million. Longcovid, rising mental health problems and back and joint pain caused by working from home, all contributed.

NURSE
In certain key sectors the pressures have been really high and actually the growth in mental health issues and wellbeing issues are coming to the fore now, so perhaps there is something of that post traumatic stress syndrome coming to the fore and that is something we should be watching for really closely.

COMMENTATOR
Todays figures show that unemployment is still low, though it rose 0.1% to 3.9% in the first three months of this year.
Vacancies fell slightly but there are still more than a million jobs unfilled and firms have been paying more to attract workers, average pay was up 6.7%.
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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.

I felt this short treatment touched on sensitive areas to do with employment, ability and disability with a subtext regarding benefits but did not have time to do them justice.

In selectively quoting a health professional, it effectively lumped longcovid and rheumatic conditions in with stress related PTSD and mental health issues, which require different medical approaches.

I feel this encourages a dangerous class error, speaking as a bioscience grad and a long term ME/CFS patient.

The ME community has been fighting the atrocious treatment of ME patients and their families due to this kind of error for decades. ME patients have died because of it.

The very real immunological condition of ME CFS is now widely considered comparable to longcovid, which experts agree is due to a virus, not mental illness. Yet only recently many people, including children, with ME have been inappropriately sectioned and treated for having ME because of this error, which lead to the death of Sophia Mirza for one example.

Please do not compound public and professional prejudices by failing to treat this subject with the perspicacity it deserves. The dangers posed for patients by encouraging a poor conception of the difficulties, are very real.

If you are going to tackle this and you should as it is very relevant, then it deserves taking enough time in a longer treatment to discuss the different factors individually and not lump them all together.


Failed comment.
My transcript of an article on BBCNEWS24 today. I felt it touched on sensitive areas to do with employment, ability and disability with a subtext re: benefits.

In selectively quoting a health professional it effectively lumped longcovid and rheumatic conditions in with stress related PTSD and mental health issues which need different approaches.

I feel this is a dangerous class error, speaking as a biosciences grad and a longterm ME CFS patient.

The ME community has been fighting the atrocious treatment of ME patients and their families due to this kind of error for decades. ME patients have died because of it.

The very real immunological condition of ME CFS is widely considered comparable to longcovid, which experts agree is due to a virus, not mental illness.

Please do not compound public prejudice by failing to treat this subject with the perspicacity it deserves. The dangers posed for patients by encouraging a poor conception of the difficulties, are very real.
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back and joint pain caused by working from home
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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.
 
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.

Exhausted? You may have hyper-fatigue. The chronic low-level stresses of everyday life can knock you sideways. From diet to exercise, here’s what the experts recommend you can do
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https://www.thetimes.co.uk/article/exhausted-you-may-have-hyper-fatigue-jc9dmvmbg

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