How to survive a Plague?

Folk

Well-Known Member
This is an HIV documentary about the early years of AIDS and how the patients made things happen.

While we wait for the release of the Fogotten Plague, this is a really good watch.

It's inspirational...
And there are so many similarities: The neglection, the patients sharing whatever could work, having the need to doctor themselves, trying stuff on their own body. A lot of things I had no idea about it.

But they were active and organized (for a while). I feel that, for a lot of reasons, we lack that part.

Link:
https://thepiratebay.am/torrent/8179333/How.to.Survive.a.Plague.2012.DOCU.LIMITED.DVDRip.XviD-GECKOS
 

Tammy7

Well-Known Member
This brought to mind........the movie "Dallas Buyer's Club" Great movie. I think Aids got a lot of attention finally because it was so visible and people were dropping like flies. This scared the you know what out of people.
I havn't watched the HIV documentary yet........but certainly will.
 

Folk

Well-Known Member
On the one side they didn't have to face the "it's all in your head" dilema that led ME/CFS to years of neglection.

On the other side they had to face other kind of neglection. The homophobic one, along with even the catholic church turning against them. Plus the fact that people wouldn't even want to be near an HIV inffected person, for the fact that they knew it was a contagious disease and nothing more about it (well, that missinformation lingers on till now...)
The number of deaths certainly made it impossible to be ignored. (in the doc they stop counting at over 8 million)

Strangely enough, overcomig the "it's all in your head" is showing to be a thougher job.
 

Tammy7

Well-Known Member
Yes............they had to face the homophobic issue.............but man oh man they came together in a fierce way to stand up for themselves.
 

Folk

Well-Known Member
And since they could be about to die at any minute, they didn't have the time neither the health to wait for science.

They had to try everything they put their hands on. I just think they didn't overreact to everything like we do.

One has to wonder how diying people aren't as wrecked and wiped out as sick (with ME at least) people.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
And since they could be about to die at any minute, they didn't have the time neither the health to wait for science.

They had to try everything they put their hands on. I just think they didn't overreact to everything like we do.

One has to wonder how diying people aren't as wrecked and wiped out as sick (with ME at least) people.
Good point...It was as if they were in some sense healthier - more functional - until they died. Hey, there's nothing like something that wipes your energy out and leaves you overstimulated at the same time!

They also had nothing to lose - they were dying - as someone said - a hangman's noose in the morning really focuses ones attention...
 

Merry

Well-Known Member
Thanks for bringing up this film, Folk. I saw it a couple of years ago and would certainly recommend it. People in the ME/CFS community have often asked why can't we be more like AIDS activists. What struck me while watching the film is how functional the activists were. They could get together for lengthy meetings that included heated debate and could go out into the streets to march and to engage in theater to draw attention to the cause.

I don't remember if this was mentioned in the film, but some gay men already had experience as activists before the AIDS crisis.

That being HIV positive in the 80s meant certain death certainly did motivate activists, but news of a deadly, contagious disease got the attention of public health officials, politicians, and the general public. People were terrified. In the 80s I lived in rural Ohio, and my two nearest neighbor women, married, middle-class, educated, were afraid that they would get HIV from swimming or from public toilet seats.

But chronic illnesses -- who cares except the people who suffer from them? And we're still, after all these years, having to convince the public and doctors that our illness is real and seriously debilitating.

In the long course of my illness I've seen two CFS specialists, one well-known, and I am sure, because of the demands they made on me and the treatments they prescribed and their sunny confidence, that neither one understood how disabled I was. And the fact that I was able to get to their offices meant that my illness at that stage was mild compared to others with the illness.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Thanks for bringing up this film, Folk. I saw it a couple of years ago and would certainly recommend it. People in the ME/CFS community have often asked why can't we be more like AIDS activists. What struck me while watching the film is how functional the activists were. They could get together for lengthy meetings that included heated debate and could go out into the streets to march and to engage in theater to draw attention to the cause.

I don't remember if this was mentioned in the film, but some gay men already had experience as activists before the AIDS crisis.

That being HIV positive in the 80s meant certain death certainly did motivate activists, but news of a deadly, contagious disease got the attention of public health officials, politicians, and the general public. People were terrified. In the 80s I lived in rural Ohio, and my two nearest neighbor women, married, middle-class, educated, were afraid that they would get HIV from swimming or from public toilet seats.

But chronic illnesses -- who cares except the people who suffer from them? And we're still, after all these years, having to convince the public and doctors that our illness is real and seriously debilitating.

In the long course of my illness I've seen two CFS specialists, one well-known, and I am sure, because of the demands they made on me and the treatments they prescribed and their sunny confidence, that neither one understood how disabled I was. And the fact that I was able to get to their offices meant that my illness at that stage was mild compared to others with the illness.
I imagine the people already with HIV/AIDS also got enormous help from the gay community - because they were next! Everybody in the gay community had a huge stake in solving it.

That's not true for us. We can't point to some group and say - you're next!
The lack of healthy volunteers going to bat for people with ME/CFS and I imagine FM as well is well known..:(:(.(sighhhhh).
 

Folk

Well-Known Member
I imagine the people already with HIV/AIDS also got enormous help from the gay community - because they were next! Everybody in the gay community had a huge stake in solving it.

That's not true for us. We can't point to some group and say - you're next!
The lack of healthy volunteers going to bat for people with ME/CFS and I imagine FM as well is well known..:(:(.(sighhhhh).
If just the lack of healthy people helping was the problem... but they could at least stay out of the way. Instead they're actually learning from professionals to point the finger and say "what a sissy", "that's depression I have a friend with it", "I learnt a new word and I want to use it: psychosomatic!" and last but not least "You should go to my church/shaman/spiritual center/godlike figure on earth."
 

fdotx

Well-Known Member
I imagine the people already with HIV/AIDS also got enormous help from the gay community - because they were next! Everybody in the gay community had a huge stake in solving it.

That's not true for us. We can't point to some group and say - you're next!
The lack of healthy volunteers going to bat for people with ME/CFS and I imagine FM as well is well known..:(:(.(sighhhhh).
I heard awhile back that Mark Zuckerburg gave the NYC schools 200 million dollars and after it was all spent, there was absolutely nothing to show for it. He learned by that not to give people money without knowing more how it would be used. Sure wish he'd throw some our way......
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I heard awhile back that Mark Zuckerburg gave the NYC schools 200 million dollars and after it was all spent, there was absolutely nothing to show for it. He learned by that not to give people money without knowing more how it would be used. Sure wish he'd throw some our way......
Wow.......Man we would do something with that money! He gave it to a darn school. If he wants to make a difference this is the place.
He's probably got another couple hundred mill sitting around by now....
 

fdotx

Well-Known Member
Wow.......Man we would do something with that money! He gave it to a darn school. If he wants to make a difference this is the place.
He's probably got another couple hundred mill sitting around by now....
He sure does, I read he's since given another couple hundred million to schools in the Bay Area, but studied the situation more. Maybe we should start letter writing campaigns to billionaires - that might be more useful than appealing to the government for help....
 

Folk

Well-Known Member
Can't we organize a mass twitter/e-mail sending to hundreds of celebrities?
What about that idea?
 

fdotx

Well-Known Member
Can't we organize a mass twitter/e-mail sending to hundreds of celebrities?
What about that idea?
I don't know anything about twitter but re email, how would we know their addresses? I do think trying to reach and educate the very wealthy is something to consider - I bet there's a portion of them who are looking for good causes to support.
 

Folk

Well-Known Member
I don't know anything about twitter but re email, how would we know their addresses? I do think trying to reach and educate the very wealthy is something to consider - I bet there's a portion of them who are looking for good causes to support.
I don't have twitter and I don't really know about how does one who receive thousands of messages a day filters it. But the fact that we don't know their adresses makes twitter a more easy way to reach them. They're there, posting everyday. If we load them with messages they would end up seeing and sharing sooner or later...

But twitter is 140 letters so... It gotta be really conceise with probablly some sort of link (perhaps to a video of a severely I'll patient?)
 

fdotx

Well-Known Member
I wonder when The Blue a Ribbon or Jenn Brea's fim are going to be out? Seems they've been in production for awhile....
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
He sure does, I read he's since given another couple hundred million to schools in the Bay Area, but studied the situation more. Maybe we should start letter writing campaigns to billionaires - that might be more useful than appealing to the government for help....
They would probably move a lot quicker (lol).
 

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