2024: Twitter campaign aimed at John Oliver and Jon Stewart

It looks like a good example of grabbing the narrative. There's some great stuff in all those memes that can be used way beyond today. Someone actually made one concerning the activist trope with me-patients in beds. I'll try to see if I can find it.
 
This might be best segued with the before and after of Dianna Cowern, PhysicsGirl.

Her husband posted a time-lapse of her day.

Dianna's day with Long COVID and ME/CFS.

Here is a small time-lapse of what it looks like in Dianna's room for a day. This is what she has been doing every day since January of 2023.
Many people think if she were in her room all day without anything to do, that she could maybe watching TV or reading books. But the mental toll ME/CFS takes disables her from being able to do anything fun that is mentally stimulating.

Dianna gets a few meals a day, a few words exchanged with her husband Kyle, and not much else.

https://fb.watch/sq40fCFYkz/
 
Her husband posted a time-lapse of her day.

https://fb.watch/sq40fCFYkz/

That's really great that they shared that.

Todd Davenport said it really well on Twitter:
Invisibility is a key theme of #MECFS. The disabling signs and symptoms are invisible, often even to the trained eye. They worsen until the person must stop participating in society; invisible signs and symptoms eventually make the whole person invisible.

ME inherently makes it hard for the world to know what it is like for a person experiencing it, because it makes the person hide from the world. But thanks to internet and smartphones becoming so accessible, the direct evidence of the disease can be much more easily shared now.
 
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Her husband posted a time-lapse of her day.

https://fb.watch/sq40fCFYkz/

On Facebook, to illustrate the difference, I posted the timelapse of her doing nothing in the dark all day as the after, and for before, this video of her doing experiments and backflips on a zero-G flight, obviously barely able to contain her energy and love for life:

https://www.facebook.com/share/v/YZH5BiakigDpwCM9/?mibextid=xfxF2i

She's a great option for the Jo(h)ns to use as an example since she has severe ME, she's well liked and well known, and there's plenty of footage of her being very healthy and energetic pre-COVID.

I wouldn't be surprised if they released the time-lapse on the JohnVsJonVsME day on purpose.
 
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That was pretty great. Participation was bigger than either LC or ME awareness days. I don't know what this says about our efforts. Maybe that adding a little fun to it works better? I'll go for that.

Generative AI turns out to be only somewhat useful for now, but in the near future it will be very good at it. So there will be opportunities to do more of this. Media influence people far more than words. Even when the words are righteous and factual. Sadly, when it comes to medical negligence, facts pretty much don't matter.

Jaime Seltzer's was great, it captured the tone and style of Last week tonight (John Oliver's show):

IMO a good way to get Jon Stewart's attention is the overlap between the denial and dismissal of 9/11-related health issues, Gulf war illness and burn pits*. All of those were denied to exist by governments and even though Simon Wessely isn't necessarily a lynchpin, he does feature heavily here, but more generally it's the fact that there are many other MDs like him willing to do this dirty work. Behind every government denying illnesses where someone is at fault, there are biopsychosauruses involved, willing to shill out for powerful interests at the expense of people's lives.

Stewart has been an absolute force over those issues. When he talks about it you can feel how mad he is, how he feels the need to enact justice on those who failed people who did nothing wrong.

* Burn pits refers mostly to the Iraq wars, where some soldiers had the duty of disposing of all the trash produced by military bases and outposts, but it also affected people who worked at those bases. So lots of people basically stood around for days breathing toxic smoke from burning garbage. This is what is suspected to have killed Joe Biden's son, so this could be another angle, there is clear overlap here. Last week he wrote on Facebook:
Joe Biden said:
My son Beau was exposed to toxic smoke from burn pits while he served our country, so this is personal for my family as it is for so many of yours.
You shouldn’t have to prove that your illness came from your service.
And thanks to the PACT Act, now you don’t.
I don't know if this legislation applies to GWI, but it definitely should. And the overlap with us is strong.
 
I just noticed that now GPT-models pre trained on data are available for free users too. Is someone up to the task of training one on Me-pedia, trial by error, and science for ME (if members consent). It would be so much more useful for us than vanilla chatgpt. I’m only half joking with the proposal.

edit: forestglip knows more about this than me, please refer to the message below mine.

FYI, started a thread over here: https://www.s4me.info/threads/gpt-for-me-cfs-questions.38766/

Moderation note: posts relevant to GPT have been moved to the new thread
 
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Don't know if this has been posted already as I can't see the content of linked xtweets.

But this thread is worth (re)posting, it's brilliant. Also a contender for most bird puns within a twitter thread which must surely be saying something

glossary for non-Kiwis:

Tui = female name as well as name of a NZ bird (English spelling)

Pūteketeke (grebe) = NZ bird, awarded title of NZ Bird of the Century thanks to some serious(ly funny) election interference by JO​

https://threadreaderapp.com/thread/1796591224427815149.html
 
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